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Prostate cancer (PC)
©
prostate_cancer.htm
Are you a man who still
has his prostate gland? Even if it was removed, or
irradiated... reading this entire article might save your life;
or, save you from a very painful ending to that
life. The
MAIN PURPOSE of this piece you are reading is to HELP MEN STAY
HEALTHY; to stay alive, to not suffer a miserable death!!!
The SECONDARY PURPOSE is to give you enough facts to help you
make your own decisions about your health, in regards to your
prostate gland. The PRIMARY information in this long
article is for men who either don't have PC; or, are in the early
stages; or are worrying about PC.
This article contains a very considerable amount of information about prostate health and cancer (PC), MUCH of which is rather difficult to find. However informative it might be, it is also a chronicle of my personal experience. Nothing is glossed over.. nor held back. So, to state what should be obvious here, I did have prostate cancer. 'Did' is past tense. My surgery was in May 2003. I was 66 years old. Officially I am not 'cured' until May 2013, the tenth anniversary of the surgery, providing my PSA is still quite low at that time. So far, since the surgery, my PSA is virtually un-measurable.
***The gland is the PROSTATE.....NOT 'PROSTRATE'***
The information in this article is technical in some places. This is a lengthy article. Read it slowly and completely. Be sure you do not gloss over things. For the most part, I have written this article in layman's terms, trying to avoid the worst of medical terminology. I keep this article up-to-date.
If you have
recently been diagnosed with Prostate Cancer, you are likely to
be quite emotionally involved, and will want to re-read this
article, which is updated regularly. You
are unlikely to absorb it all on a first reading.
You MAY want to keep the URL for future reference. I
suggest you keep the URL, not the article, as I DO update this
piece. This article is identical on all websites
listed below:
The two main websites are:
http://pweb.jps.net/~snowbum
http://bmwmotorcycletech.info
On both of those websites, this article is found near the
bottom of that HomePage, in a place you can click on for the
article. You can also just Bookmark (Favorites) the
full URL.
SOME general practitioners, other medical professionals including
Radiologists, cancer specialists, Urologists, ETC, either are NOT
up to date, or will NOT
tell you things that you probably should know.
SOMEtimes health insurance companies pressure doctors to withhold
information in various ways, sometimes these are rather
subtle. With the average time spent with your doctor being
about 12 minutes, somewhat due to Insurance Company or Medicare
and other pay rates, doctor's tend to not
tell you things that might
bring longer conversations.
****If you find anything
here you believe is an error, PLEASE let me know; please
cite your sources, so
that I can confirm the information. I will then probably update
or annotate this piece. SO
FAR, no one has offered any...NONE..., ZERO!!....substantive
'errors' information; and this piece has existed for years
now. I feel good about that! That INCLUDES reviews by
doctors in the USA, and some other countries!
My e-mail address is: Snowbum* JPS.NET
You KNOW what to do with the asterisk and spacing.
You MAY contact me.
If you are embarrassed or squeamish by discussion of, or words like prostate cancer (well, you got THIS far didn't you?), penis, ejaculation, orgasm; biopsy, sexual functions,.. etc....THEN I suggest you stop here and go back to my BMW Motorcycle Technical Articles; or, go do something else. If you are NOT embarrassed, but are getting jollies; you are sick, warped, and I haven't the foggiest idea what to tell you. :-)
I have tried to write
this article such that men, and their 'significant others' (never
liked that Politically Correct term) who want to be educated
about Prostate Cancer, will do some thinking;
and, perhaps men will get tested regularly, maybe even change
their diet and get more exercise. Don't stop here,
suddenly, because you think that I am a faddist...because
exercise...and most especially, DIET, DOES
influence the occurrence of PC, THIS
IS PROVEN. It is hardly the only influence, of course!
All the
information presented here is absolutely true as far as I know.
I have tried to NOT overemphasize; NOR to gloss over
things. I will explain what you NEED to know
about PC.. I have consulted (on a great deal of the
information in this article you are reading) with medical
doctors; knowledgeable and/or experts in their fields;....and,
NOT just those involved with my personal care....and
believe I will be giving you honest, fair and rather complete
information. At the end of this article are
Addendums, and information on certain books and other sources of
information. Also, a revision date for this
article....so you can see when it was last
updated.
I have NOTHING...ZERO....to
sell you!.....I am not selling vitamins or quack cures or
promoting certain doctors. I WILL provide you, here, with a
LOT of free information!
Prostate cancer, PC or Cancer of the Prostate, is very common. A rather high percentage of men will have it sooner or later. The incidence is CONSIDERABLY HIGHER than for women's breast cancer. Most men NEVER find out that they have prostate cancer, nor will they die from it; rather, they will die from other causes such as accidents, heart attacks, etc. In the U.S.A., men have a 50% chance of SOME sort of cancer in their lifetime. But, only about 1 in 10 men need treatment. Do NOT get complacent by that seemingly mild figure.
Of the cancers that men are likely to face, skin cancer is likely #1. Prostate cancer is probably #2. About 234,000 new cases of prostate cancer are detected every year. About 30,000 men die from prostate cancer every year. With the Baby Boomer Generation upon us, and living much longer, I expect both of those figures to go up rather considerably. In fact, I think the figures will double within the next 20 years. SO... a considerable number of men DO die FROM prostate cancer every year. But, don't get into the mathematics too deeply. Yes, I know that you can easily see that something near 13% of the NUMBER of those being diagnosed are dying every year...but, statistics do not tell all of the story, and statistics strictly given are to be properly interpreted for REAL meaning.
What I CAN tell you is that you do NOT want to die from PC. It is likely to be a bad process of dying, eventually quite painful; and, for some men, the amount of strong narcotics needed to control that end-stage pain are eventually very large, and you will essentially not have a pleasurable life at that point, nor considerably before. You will also likely be taking drugs to suppress testosterone, which have their own nice side-effects. You could even have your testicles removed; which is not done all that much anymore...but is certainly cheaper than some long-term use of some drugs.
Scared??...my intention IS, yes, at this moment,
to scare you JUST A LITTLE.....to get
you to read ALL of this article!
Prostate cancer is BIG business, and
many doctors have a vested interest in their particular
specialty, such as a Surgeon/Urologist versus a Radiologist (or
Radiologist-Oncologist). Because of this, one
must be cautious in what one hears and reads. In
my case, I had straight talk from MANY sources, probably due to
my initial knowledge, and my careful selection of these
sources. I also had some medical background, which
helped. Do not take these words about vested
interests lightly. 'Vested interest' can be financial or
experienced specialty.....or both, plus a few other things more
subtle.
The risk of developing prostate cancer increases with age, and that RATE of increase is FAR greater than for ANY other type of cancer. The risk if younger than 39 is about 1 in 10,000; if between 40 and 59 it is 1 in 103; for 60-79 it is 1 in 8. Within those categories, the risk rises to the higher numbers as one gets older in that group age spread. The RATE by country also greatly varies. PC is very likely due to a combination of environment, diet, and sometimes genetics and/or race. At the low end of risk are countries like China, India, Japan, and Italy. At the top end are Switzerland, Australia, Sweden, Canada, and U.S.A.
NOTE that as immigrants living in low risk countries move to and live in the top risk countries, their rates rise to roughly the norm for the new country. That makes one tend to think that environment and foods are large factors. In fact, very serious connections between foods and incidence of PC have been shown over and over.
Of many suspected causal agents, free-radicals (these are always attacking us) HAVE BEEN SHOWN AS A CAUSE. When younger we have natural protection amounts of anti-free-radical chemicals in our bodies; that is, they neutralize the free-radicals. Pre-cancerous lesions are found in roughly 33% of ALL the world's men, in their 30's!!! It appears that younger men are protected by an abundance of anti-free-radicals. We have less and less of this 'protection' as we age. Human beings in the developed world are living much longer. As we live longer and longer, we have more TIME to develop Prostate Cancer. It is also VERY apparent that some types of foodstuffs are helping bring about PC. Some food preservatives are very suspect now; not just the already pretty-much-proved effects of having hydrogenated fats in your diet (which also seem to be heavily involved with women's breast cancer).
The DRE (Digital Rectal Examination...the gloved finger of the doctor up your butt...) can NOT detect more than about 40% (at best) of prostate cancers. Hence we have the PSA test which is in such widespread use. The PSA test is NOT a 100% reliable test, but, it is very helpful. The TREND (or, Velocity) of your PSA readings is usually vastly more important than the absolute value; but, not always. Please keep this in mind: 'TREND/VELOCITY and ABSOLUTE VALUE". ALSO, keep in mind that you COULD have a low PSA, and a doctor might find cancer with his finger (feeling for nodules)....or he might not! But, that DRE, and the PSA test, together, are PRESENTLY your 'keys' to likely finding a problem early, and thus being able to deal with any problem before it becomes a big problem.
THE key to preventing PC is probably a life spent with moderate exercise and proper diet, and with some help in not having a familial history of PC, nor being African American. THE key to a CURE (if you HAVE PC) is to remove or destroy the cancer BEFORE it breaks out of the prostate gland. It MAY be curable if confined to the seminal vesicles, but if it really gets going good in the lymph nodes, it is NOT curable, it will always spread, and it has a nice affinity for bones, although it CAN spread to almost anyplace. One MIGHT still have a long life, or a normal lifespan, depending somewhat on what that means. Lifespan may depend mostly on your age, expected lifespan, and on the aggressiveness of the cancer cells. THAT aggressiveness .... is part of the so-called Gleason Score consideration.
Keep in mind that a CURE MAY NOT REALLY be necessary for you!! Things like age and life expectancy and what is found in various tests, are required to make an informed decision. In many instances, in fact, possibly a large percentage (some think upwards of 40% of PC cases detected)....there is not enough life expectancy from normal aging to warrant serious intervention. That means, that for QUITE a few cases of PC, there really is no GOOD reason for surgery or radiation...with some caveats. In other words, in laypersons terms...if you had 10 or 15 years left to live, per life expectancy tables, do you REALLY want to go through VERY serious surgery (or VERY serious radiation.....not to mention hormonal treatment, etc).....all these things WILL affect your quality of life, you know!.......or, would you rather follow a regimen that is pretty well-proven to work well in the vast majority of PC cases? Of course, average life expectancy might be too low for YOU. Thus, you have to make educated guesses or estimates for yourself.
I will state the situation right here. There WAS a system of PC management, once called 'watchful waiting'. It is probably mostly obsolete. For those who will have watchful waiting, the latest type is "ACTIVE watchful waiting". YOU must decide, perhaps with your Urologist's help, if this ACTIVE method I outline below is for YOU. Frankly, if I had been older, perhaps closer to 70+, I might NOT have selected surgical treatment....assuming CERTAIN CRITERIA....so read on....
1. If you follow the below information, you MIGHT WELL be deciding on NO radiation, NO surgery...and you may well find that you have saved yourself a LOT of the problems of those interventional treatments.
2. In order for this type of Active Watchful Waiting with delayed intervention (if needed at all) and management to work properly, you MUST have a diagnosis that fits the below information, and you must follow what I have put below. Remember, that the risks and side-effects of surgery and/or radiation and/or hormonal, etc., treatments, may well FAR surpass the risks posed by the cancer. Over some years, what I am listing here, has worked VERY well for a large majority of patients with PC. That does NOT mean I am 'promoting' it...just that I want you to be informed about ALL types of treatment, etc.
Unless
your PC situation is such that the PC is such a great immediate
threat to your life, that it leaves you no alternative to
radiation or surgery, then you might want to think carefully
about what is just below.....after
which I get back to the main article information.
When to THINK about Active Watchful Management of PC:
a. Your
biopsies shows a Gleason Score of 7 or under, and preferably 6 or
under.
b. Your PSA is under 10, and the velocity is NOT greater
than 0.75 per YEAR.
c. You have Clinical stage T1 or T2; AND, the cancer has
not broken through the prostate (that last item is pretty iffy to
determine, actually).
d. You get tested for PSA every 3 or 4 MONTHS
e. You get transrectal ultrasound of the prostate every 6
to 12 months.
f. You repeat the biopsy tests EVERY 12 to 24 months.
g. Biopsies are performed if a PSA velocity exceeds 0.75 ng/ml
per year.
Yes, these are stringent requirements.
Final note on the above: Research has cast goodly DOUBTS on previously accepted theories that for most men over the age of 70 or so, that 'watchful waiting' is better than treatment. It now appears that SOME type of treatment, probably hormonal at that age, will INcrease lifespan. Whether or not such treatment improves Quality of Life, is another story. Whether or not ACTIVE watchful waiting is going to be desirable, or proper, is a darn good question. I do NOT have a cut and dried answer for you.
The
rest of the article now continues...
NOTE!!!...This
article does NOT go deeply into treatment for ADVANCED prostate
cancer!!
('advanced' here means that radical surgery or radiation methods
are unlikely
to be very helpful). There is SOME mention herein about
some treatments for more advanced cases. Even for
early stages of prostate cancer, sometimes age and physical
condition CAN make radical prostatectomy INadvisable; even
radiation. Sometimes some types, or all types,
of radiation treatments will be inadvisable.
Individual cases vary. Always do a LOT of investigating, do
not believe the first story or diagnosis or prognosis or type of
treatment recommended. In some situations, NO
treatment is the best treatment, and in some, surgery or
radiation (including radioactive seeds), are, or are not, a good
idea, but hormones might be used successfully (but not for an
actual cure).
Prostate cancer begins, it is believed, by one rogue cell, out of many billions of normal cells, and that rogue cell divides, and then the two divide, then the 4 divide...this goes on and on. The first rogue cell is distorted more or less, not normal looking, and may be lightly distorted....or horrendously misshapen. Eventually, enough cells are produced that are distorted, for a pathologist to see them, sort of like seeing some in a big forest of OK cells in the beginning. The distorted part that pathologists particularly concentrate their look at under their microscopes is GENERALLY the distorted nucleus. The larger the percentage of those misshapen cells and nuclei in an inspected area, the worse the situation. These are the most aggressive in multiplying. Bad cells do not get born, develop, and naturally die off in the same normal way normal cells do, and thus bad cells keep dividing and multiplying. This is a very complicating factor, especially in treating advanced cancer.
The absolute cause of PC is not truly known for sure, but all research to date shows that while it can be genetic (not in my case, as far as I know); diet and exposure to chemicals, etc., are FAR more important. Things in ones diet that seem to be implicated in PC are nitrited/nitrated (cured) meats; meats grilled over a flame where dripping fats can burn; not enough tomatoes, and maybe not enough of some other antioxidant container food items.
Prior to 2007, I had found mixed information from studies on cruciferous vegetables with regards to PROSTATE cancer. But, by late 2007, enough studies had been completed to allow me to say that I HAD found fairly conclusive information on the helpfulness of cruciferous vegetables (Kale, Broccoli, Brussels Sprouts, Mustard Greens, Turnip Greens, Cabbage...). The results of the studies SEEM to indicate that these have some goodly preventative value; and, in particular, seem to have a rather substantially beneficial effect on the virulence of any PC that develops. There are some other foodstuffs that SEEM possibly beneficial, in prevention, and maybe if one already has PC. A few minerals in insufficient amounts, such as zinc and selenium are also possibly, perhaps even likely, a problem. Anti-oxidants are helpful in reducing risk. Very detailed studies on zinc and selenium are being done, results won't likely be available until the year 2012. Watch out however, selenium in the 200mcg amount is too much for other reasons.
The helpful lycopenes in tomatoes (which, in some
early studies, seemed far more
active after cooking than raw tomatoes, but other studies had
opposite results), are absorbed
nicely if eaten with a bit of
olive oil. Some
research has showed that the beneficial effects of tomatoes
is almost only if eaten with vegetable oils; in particular,
olive oil. It appeared from later research that
the value of tomatoes had more to do with whether or not they are
eaten with such oils, and less to do with whether cooked or
not. This is because prior studies involved mostly
those who used cooked spaghetti-type of tomato
sauces...>>>.this is, actually, a simplification
here. It is now believed that fresh
tomatoes, cooked, and then eaten in sauces or dishes that
include olive oil, are more protective than in other
forms. I think the confusion is partly because of the way
our digestive systems process oils, and how certain things
dissolve, or bind, to SOME types of oils. The
cooked versus uncooked is still a partial unknown. Best to
eat both. With small amounts of vegetable oils.
NOTE!.....The
Lycopenes in Tomatoes do not appear to PREVENT you from getting
PC. What they do is to help, perhaps considerably help, PC
from advancing to a much more serious situation. This is
tricky, because you could have a very tiny tumor, and it might
not even raise your PSA, but the tomatoes may well help. It
is pretty well proven, from studies reported on in late Summer of
2007, that Lycopenes (Tomatoes are the big source) really DO help
greatly in preventing prostate cancer from
progressing. What does all this mean? Well,
you'd better have plenty of tomatoes in your diet, detected PC,
or not.
AVOID
hydrogenated oils and fats!!!!!!
By the way, it is PROVEN that
Women's breast cancer (and some men get it too) is somehow,
at least partially, tied to the consumption of hydrogenated
fats.
Low amounts of certain vitamins, including the mentioned selenium and zinc, seem to tend towards 'allowing' prostate cancer to start up or appear. There may be a connection with other vitamins and minerals, not too clearly though. There may be a goodly connection with hydrogenated fats that are so prevalent in Western countries....some studies indicate a fairly strong connection with those types of fats, and describe them as potentially very harmful. I once, years ago, when I volunteered at a Health Department, ran across a never-published study, done in Finland, paid for by the U.S., that showed rather strongly that hydrogenated fats use is strongly tied to women's breast cancer. Did not surprise me. It also did not surprise me that the study was buried. In the U.S., hydrogenated fats are in a very high percentage of store-bought packaged food items. As far as I can determine, there is nothing...ZERO....healthy about hydrogenated fats. ....and, the REVERSE is true, they are UNhealthy....GREATLY unhealthy.
In most publications the public reads, one sees printed: "If caught early enough, PC is typically 100% curable". Think about that sentence a few times. What does it REALLY mean? What the heck is 'typically'; what is 'curable'??? What is 'early enough'???
'Curable' does not mean you are left as you were before any treatment!!! They do not put THAT in their article headlines!!...the articles do NOT hardly discuss THAT at all! Cured of cancer, as medical doctors use that word, simply means cancer-free for 5 years or longer (10 years is the officially accepted time for PC). 'Cured', in their usage, means you are likely to have a more normal life-span, and not die from prostate cancer and its effects. 'Cured' means that your PSA tests show machine lower limits of testing, for at least 10 years after your treatment is completed or stops. Since sometimes PSA will spike, temporarily, after surgery; same for radiation and hormonal treatment, the 10 year period begins after the spiking settles down. Prostate cancer surgery or radiation may well leave hidden a small number of cancerous cells in the body (much more with radiation, usually), sometimes these may grow and eventually show up as an increased PSA reading, after some years of very low machine-limits testing. I think that 5 years, or maybe 6 years, is probably a reasonably good time to consider oneself as 'cured'....in the sense of making long-term plans and goals, etc....providing your PSA remains very low. You could probably be more aggressive and use 2 years, and be fairly accurate. Does this mean you put your life on hold for 2 or more years after treatment...NO, it does NOT mean that.
To put this all in perspective, you really DO want any prostate cancer to be detected and to be cured early, if possible. ANY side-effect(s)....and these may be very low...or quite high, or anything in-between;....is usually, or often, better than getting advanced prostate cancer and dying from it. If you can not be cured, you certainly will want to know as much as possible, so as to help make the proper decisions about treatment.
Men past age 50, and some past age 40, are
recommended to have at least what is called a DRE, Digital Rectal
Examination, at every yearly regular
medical checkup. The physician uses a gloved finger,
inserted into the anus, and feels for lumps or hard nodules,
through the wall of the rectum. Some
men find this embarrassing. Get over it! Be
sure to ASK for it, if it is not offered. YOU ARE AN
IDIOT IF YOU DO NOT GET CHECKED, PROPERLY, YEARLY!!!
The physician can not feel much of the prostate (remember, that
40% thing is BEST case), so this is not a 100% check, not by any
means. Each year you are checked, increases the
chances of finding a problem IF YOU HAVE ONE
developing.
The other test, called the PSA (Prostate Specific Antigen) is
usually recommended yearly at age 40+ for blacks (African
Americans), 50+ for whites (incidence of PC is earlier for
blacks, probably genetic, but this is NOT known for sure).
I feel even EARLIER is better. Even if you have to
pay for the PSA test yourself, it is cheap insurance.
***You should ASK for a PSA test....and record/write down the readings yourself, and keep the written record for the rest of your life...adding to that list after every PSA test. If you can, have the PSA test done by the same lab every time, and do NOT have ejaculatory sex within a couple of days prior to the test....it can skew the results of the test. Bladder or prostate infections can also skew results of the PSA test. They should be cured first. Do NOT have a DRE (finger exam) done by your doctor within a few days prior to the PSA test. That DRE can affect PSA by as much as 10%. I cannot overemphasize the need to get both of these tests regularly and to keep YOUR OWN records.
If you are unwilling to have the PSA blood test, and the digital rectal examination done at every yearly physical, you can just stop reading right here....and ....good luck....and I am NOT KIDDING...stop right HERE....and don't read on.
If you don't get these tests done...and if you get advanced prostate cancer, you can then learn all about nasty radiation and anti-hormones....because it will be plenty advanced when they find it from advanced cancer symptoms; no surgery for you...too late for that! From all accounts that I have read about....and friends and others whom I have talked to......the pain, when it invades your bones....is simply awful, the pain is mostly unending, drugs or not, and you might even need radiation to your bones to stop that pain. You also will lose your libido, likely well before, and have some not so nice side-effects from drugs, etc.
I mean it!...unless you commit to testing, stop reading right here...you are wasting your time, and wasting MY time in writing this lengthy article.
NOTE: some insurance companies won't pay for a PSA at too young an age, or just won't pay period. Find some place having a 'health faire' and pay the lower fee, and get your baseline PSA. DO IT!!! THEN, do it every year!!!
The prostate gland produces a substance; which, shortened, is PSA (officially Prostate Specific Antigen) and releases it into the blood stream, thus PSA is measured with a blood test. I have gotten both that test and the DRE every year, for MANY years. I kept a written record of the value of the PSA, and the date of the test. There is a tremendous amount of MIS-information about these tests...and about Prostate Cancer in general. I hope the rest of this article informs you!
PSA values are measured in Ng/mL, which means nanograms per milliliter. Now that you know that, you can forget it......as your readings will be numbers that I list below, I will just drop the Ng/ml ending.
The
American Prostate Society says that "the old rule of 'no
worry' if the PSA is under 4.0"... is seriously out of
date.... and obsolete. This was
confirmed in late 2003 and early 2004, by several very carefully
done evaluations of large groups. Also,
recommendations on just when to get PSA tests done have
changed.
If PSA
is:
Then your next PSA test might be recommended in:
0-1.0
5 years
1.0-2.0
2 years
2.0-4.0
1 year
There are plenty of
WORTHY books available on the subject of PC, particularly a
rather thick paperback authored by Patrick Walsh (The
Prostate....a guide......). Another worthy book is
"About Prostate Cancer" by Ellsworth, Heaney, and
Gill. Which discusses all aspects of the disease.
That one is published by Jones & Bartlett; who have a
website, www.jbpub.com.
If you were to purchase some literature, I'd recommend those two
books. ...BOTH of them. You might also be able to
borrow some books from your regular doctor or a Urologist!
READ several of these sorts of things, including the two specific
ones I recommended here by name. Those books are a few
years old now, so check for updates, etc.
Do NOT get your PSA test within two or three days of having the digital exam....and same for having sexual relations. Restating: no DRE and no orgasms, no ejaculations, within 2 or 3 days of a PSA test. Three is better than two. Use the same laboratory to analyze the blood every year. It is not uncommon for men to get bladder infections, that can affect the prostate, and the PSA measurement. Common bacterial infections in this area can skew the PSA tests. If you have such an infection, your doctor may prescribe some sort of antibiotic, for at least 10 days. For some men, these are chronic infections, and often the cause is that they are having sex with their partners, and the partners are re-infecting them. Many men suffer prostatitis, for years. As an aside note....for those with CHRONIC infections, 10 days of an antibiotic is NOT....NOT!! ...long enough to give a cure. AT LEAST a month on antibiotics, of a type that is known active against their particular bug, is needed. That a month+ of antibiotics is commonly NOT KNOWN, in the treatment of chronic prostatitis, bladder infections, etc.
NOTE: Some medicines DEcrease PSA considerably, which masks true PSA test results. One example is Proscar (Finasteride). Note that another PSA test, which measures PSA that is NOT BOUND to proteins, the "Free PSA" test, is NOT generally affected by that drug. Some medicines DEcrease testosterone, which CAN mask true PSA rest results. Conversely, if you are taking testosterone, that can INcrease PSA......so get tested VERY regularly if taking testosterone type drugs.....as testosterone HELPS PC grow!!
>>>***It IS possible for the PSA test to remain low, and yet cancer is growing. That is almost never said anyplace. If the cancer is small in size or involvement, and/or the cells are not overly aggressive (overly malformed), your PSA may well be a "reasonable" value. The PROBLEM is, WHAT is 'reasonable'.
Prostate cancer is ALMOST ALWAYS written about as being 'very slow growing'....and; that "many, if not most men, will have it eventually, and die from something else". That is all true, but the literature almost never speaks about those prostate cancers that are FASTER growing. Nor, are the books at all clear that the ONLY way to TRULY determine the EXTENT of prostate cancer is serious surgery. (although biopsies are a very good determiner, just not as good as handing the pathologist the entire prostate to cut apart, as well as lymph nodes removed early in the surgery).
Keep in mind that a fair percentage of these prostate cancers are faster growing. Think of it this way, if you must:, although this is twisting the mathematics for illustrative purposes: 51% ("most PC...") of cancers are slow growing; 49% are fast growing. Which group are you willing to take YOUR chances on being in?
The latest figures (Am.
Prostate Society) for normal
PSA:
Age
African Am.PSA
Cauc/Asian PSA
40-50
0-2.0
0-2.5
51-60
0-4.0
0-3.5
61-70
0-4.5
0-4.5
71+ 0-5.5
0-6.5
<<Note:
Look at that table just above...then read this: 25% of PC
found, is found in men with PSA BELOW 4.0!!>>
Note: The
gland, the prostate, which has several functions, including
making the majority of ejaculate and carrying of sperm, tends to
slowly grow over one's lifetime. The larger the gland, the
more PSA released into the bloodstream (as a general rule).
In a fair number of men, as they age, they find they are having
urinary problems.....having to urinate more often, less capacity,
having to get up at night to urinate. Those are the usual
signs of an enlarged prostate.
That condition, Benign Prostatic Enlargement, BPE, is
NOT....NOT!!!...in itself a sign of cancer!!! It is,
actually, a fairly normal situation for older men. HOWEVER,
if the situation continues too long and it becomes more and more
difficult to empty the bladder, treatment for that is a very good
idea, before bladder walls, kidneys, etc., are affected.
Some have it bad enough to
warrant modest surgery for opening the urethra inside the
prostate. Surgery sometimes needs to be repeated
as time goes on and the prostate continues to enlarge (another
point not mentioned much about that surgery). That
type of surgery is usually done these days through the penis
opening.
The prostate is, in effect, a powerful muscle, that,
besides making fluid and collecting sperm, at orgasm forces its
contents into the urethra and out the penis tip. The
contraction also forces more PSA into the bloodstream. The
contraction is part (probably a goodly part) of the pleasurable
feeling of an orgasm. The two sets of nerves that
control the erecting of the penis run along the surface of the
prostate. Dr. Walsh, book cited above, was part of the team
that developed the 'nerve-sparing' surgery. It is NOT
always practical to save the nerves during surgery, depending on
the extent of the cancer. Radiation is not nice to the
nerves either.
*****It is very clear from many years of clinical experience, that even when nerve-sparing surgery is done, that the nerves may take up to 2 years to begin to work properly again. Thus, if a man has his prostate removed, and the nerves are spared, there IS a good chance of the nerves working again....but you MUST BE PATIENT!! Many men find that 18 months is needed, some a bit longer. It is also fairly common, after surgery, for a man's erect penis to be a bit shorter (I will BET you NEVER see THAT written anyplace besides medical journals, and even then, rarely seen)*****
There is a gray area for PSA of 4-10. Those
in that area should have an additional test called 'Free PSA',
mentioned previously, and maybe a prostate density (size) test
(totally NOT painful), as larger prostates produce more PSA,
skewing the readings higher. Frankly, my feeling is
that if one's PSA has risen at a rate
(often called VELOCITY) that seems unusual, given previous
history, and remains elevated after a course of antibiotics
(and no sexual relations NOR digital exam within 48 hours MINimum,
before any PSA test)....I, and others, would likely advise you to
go see a Urologist, or at least ask your primary care physician
for that 'Free PSA' test....before any possible cancer (it may
well NOT be cancer!) has gotten out of control. If the
Free PSA test is over 25%, you probably have no further
worries. If regular PSA is 10+, usually the Free PSA test
is not needed....as cancer is assumed.
Are you getting the idea that getting your first PSA is a good
idea, so you can have that baseline value, and have yearly PSA
tests and YOU watch trends?
Even if the DRE finger test reveals nothing to your
doctor, you should get the PSA test every year, and personally
keep track of the numbers. It
works out better for most folks to have the PSA blood test done
right along with the regular yearly physical exam blood and urine
tests. Get the PSA test itself about a week BEFORE or
a week AFTER you see the doctor for your yearly exam, as said
exam at the doctors office SHOULD include the digital rectal
exam, which would affect PSA if that rectal exam was done within
a couple days or so before the PSA blood test. Do
NOT have ejaculatory, or near ejaculatory sex within 48 hours,
three days is better, prior to that PSA test.
How much of a rise per year is OK?...hard to say exactly, but
maybe 0.7 is the limit, and anything at or above 0.5 per year is
questionable. That rise per year is often spoken of
as either RATE, or, VELOCITY. There is more
information on the RATE of increase, much later in this
article....particularly note the section on managed
waiting....the rate (velocity) should not be over 0.75 ng/ml per
year....for those already diagnosed.
If the PSA test is higher than normal, you MIGHT
have prostatitis, so ask the doctor for 10 days of a good
antibiotic, then after you use up all 10 days worth, wait
5 days or so (don't do anything to get re-infected), then
get retested again. By the way, and
this is little known, even by some doctor's: if you
suffer from prostatitis regularly,
that Chronic Infection thing I have mentioned;....then, a
10 day course of antibiotics is NOT NEARLY long enough...get at
least a months worth. Otherwise, chronic prostatitis
will return. Cipro is usually used, but some bugs need
Keflex, or something else. Remember
no sex nor DRE within 48 hours prior to the PSA test, and be off
the antibiotic for 5 days. NO SEX here means both
no partner and no orgasms. No hand
jobs!
****If your PSA shows a rising trend that is even a bit
questionable, over a period of time, and/or
higher than expected for your age, you probably should go see a
Urologist and get further tests done. Waiting
can KILL YOU. Waiting can make things more
serious, the treatment more involved. Do
I have to keep mentioning this sort of
thing? Even if cancer is suspected, and
you have to have the biopsies....what REALLY!....is a very FEW
minutes (3-10) of being uncomfortable....compared to MONTHS of
horrible pain and other nasty side effects, if you do NOT
do the tests?
The
nitty-gritty....((so, you are having biopsies done??)):
What is usually spoken of in most "learned
author's books", although maybe not so succinctly, is that
combinations of the value of PSA in the normal regular PSA test;
plus the test called 'FREE PSA'; and the results of DRE; and
possibly the results of a nuclear bone scan; and PSA
velocity....will all usually be combined with biopsies of the
prostate, for an over-all idea of things. A
pathologist looking at the biopsy tissue samples will GRADE the
samples and then assign a 'SCORE' ...usually called a Gleason
Score.....and the results of all this is typically a fairly good
idea....again, not foolproof....of one's cancer
status. It is entirely possible to have a modest
PSA, and have no detectable cancer in biopsies, hence several
types of tests to rule things one way or the other.
The biopsy samples are usually taken with a needle, via the
rectum, more on this later.
Biopsies CAN miss
cancer. In order to try to prevent missing something,
usually at least 6 samples are taken. The latest
information from The American Prostate Society is that at least
10 or 12 are far better at detecting PC.
If your PSA stays questionable, you (or more likely your
Urologist) may want you to have a repeat biopsy some time
later. As many as three series of biopsies might be
needed over a period of a number of months in unusual
circumstances.
NOTE!: The need for 10 or 12 core samples is emphasized
more and more nowadays by the most learned doctors.
NOTE!....The American
Prostate Society recommends that biopsies probably are not
needed...in fact, recommends they not be
done......IF....the "free/total PSA" test (a special
type of PSA test, that your doctor can order) is ABOVE 25% of
your total PSA. The reason for the
recommendation against biopsy for those men is that if at or
above that percentage, it virtually eliminates the possibility of
prostate cancer. Source: American Prostate
Society, update Volume 8, Number 6, Fall,
2002.
NOTE!....if a biopsy comes back from the pathologist with a note
using such words as 'atypical' or 'suspicious', do get a
repeat biopsy after waiting for your first biopsies to heal, and
consider having the samples sent out for a second opinion from
another pathologist.
There are several ways for the lay person to think about Gleason scoring.
A pathologist will evaluate the organization and the structure of the tissue from your biopsies. The pathologist looks at the cell centers, the nuclei, and assigns a Grade. The first area of a biopsy he analyzes is the largest one under the microscope. If close to normal, he assigns it a "1", if extremely distorted in shape, size, and nuclear discoloration, it may be rated as high as "5"; obviously there are in-between grades of 2, 3, and 4. A second area, less significant, is then analyzed. The two Grades are then combined for a Total Gleason Score, something like this: 3 + 4 = 7
The Gleason Score, to put this in MY way of thinking, is a scoring of the amount of misshapen cells and thus the AGGRESSIVENESS of the bad cells. The pathologist will combine grading, and come up with a Gleason SCORE. A Gleason 1 means that the cancer at THAT place/biopsy sample, as looked at under the microscope, shows the cells nearly normal looking, and the tumor can be expected to be VERY slow growing. The Total Gleason Grading Score is what is commonly called 'The Gleason'. However, you may see it reported as two numbers, such as 3 + 4. Total Scores of 7 and higher are more serious. The FIRST grading number is more important than the second number, that is, 3 in 3 + 4. Mine, at the pre-surgery biopsies was 3 + 4 = 7. This was reduced with the pathology at surgery-time to 3 + 3 = 6), which is better than 4 + 3..
Prostate cancer cells are very difficult, if not THE most difficult, for a pathologist to interpret. Pathologists make mistakes. Second opinions of the same tissue samples may be needed, and YOU may have to initiate such.
Gleason 1 is often called 'well-differentiated'. Gleason 4 and Gleason 5 means that the malignant cells are growing and aggressive.
You might see on your pathology report (be sure to get a copy) something like PIN, or Prostatic Intraepithelial Neoplasia. This means, if LOW GRADE, that it is not a forerunner of PC, and does not even belong in the report. HIGH GRADE, however, can be a precursor of PC, should be in the report if found, and it was once believed that half of diagnosed high grade PIN men go on to develop cancer, latest research says about 1 out of 4.
Gleason Scores of 9 or 10, and maybe 8, should have you demanding relatively immediate treatment. If you decide on surgery, the Urologist-surgeon will want the swelling of the prostate from the biopsies to go down...that is, the prostate to shrink....and he probably will have you wait a month or somewhat more, which is fine, as it is very important that the surgeon be able to do his job as best possible, and a large swollen prostate makes things harder on him. Taking drugs to shrink the prostate is NOT a great idea prior to surgery, as it may heavily mask proper pathology of the tissue samples during surgery.
I will assume, from here-onwards in this article, that the Total Gleason Score, and other tests, are such, that cancer is diagnosed.
Once such a Total Gleason Score is determined (with some variance possible depending on the pathologist's skill and interpretation), then the doctor tries to determine a STAGING. Staging goes from essentially nothing found really bad, to very serious stages where the cancer has spread into all sorts of areas of the body. ONE thing is probably true, once the cancer gets outside of the prostate, with maybe some leeway if only in the seminal vesicles, it spreads, and is NOT CURABLE, although its growth can be slowed, and symptoms that arise can be dealt with. More or less. Generally speaking, you are in trouble if the cancer has spread much.
There is a tendency for removed prostates to score higher. Whether this is due to the time lag, or the pathologists looking at the original biopsy, is not known to me. In my case, the pathologist at the hospital rated my removed prostate slightly lower in Gleason than the pathologist who did the biopsies analysis, which is probably a bit unusual...but there MIGHT be a tendency for SOME biopsy pathologists to cover their butts (horrible pun, that!) by assigning slightly higher values. I have ZERO knowledge that this could be so, it is strictly conjecture. Again, even for well-trained pathologists, reading samples is rather difficult for Prostate Cancer.
It is possible
for the PSA to be LOW, and you have cancer. If your
PSA is rising a wee bit with every yearly test, doctors have
charts for what type of rising is acceptable, and what is
suspicious. I've put the important information for you well
above in this article.
At the slightest suspicion, showing
something strange over a period of time, it is likely time for a
biopsy. Putting this off can cause you major problems
later on. Heed my
words!!!! I did NOT put it off, am QUITE happy I did
not!
In my situation, my PSA tests, and DRE checkups,
were all quite normal. One PSA test in 1995 was a teeny bit
higher at 2.2 (who knows, I might have had sex the night
before....I did not know about sex having an effect on the test
then); and, any minor infection of the urinary tract (bladder,
prostate, etc.) can raise the PSA. Most doctor's will have
you on antibiotics for a 10 day period, then off for maybe 5 days
or a week, then get re-tested, if your initial PSA test was a bit
high. My PSA settled back down...under 2...until
2000, when it reach 2.2 again. In 2001 it reached 2.8,
still low. That means it rose, but not at a alarming
rate, unless that continued. The value was not high for my
age either. Doctors,
using the OLD guidelines, did not anticipate problems when men
have PSA readings under roughly 4.0. SOME still think that
way. A
generality, that maybe should be looked at more strongly....and
now is thought obsolete by truly knowledgeable
sources.
SO!...LISTEN UP!....that 4.0 value is OBSOLETE!!!
I was due for my annual physical in March of 2002, but I changed insurance carriers, and the new primary-care doctor (I had to select one and was finally assigned to him), did not, or his front office nurse did not, check off the place on the paperwork for a PSA test on my normal blood tests at that time. THAT was THEIR mistake. I ignored not having the test, as my PSA had always been rather low. THAT was MY mistake. When I next saw the doctor, near the end of 2002, I asked for the DRE and PSA test, and it came back at 5.9...a large jump. An antibiotics routine dropped it to 5.4. Those readings were NOT overly alarming for my age and charts (65 at the time), but the RATE of increase was VERY suspicious. Remember, from the prior paragraph, my PSA was 2.8 two years prior. The RATE was MUCH higher than the 0.5 or 0.7 increase per year that is usually considered reasonable. He referred me to a Urologist, who recommended 'a biopsy'. My biopsy was scheduled for March 2003.
The biopsy is NOT
fun. It is not horrible.
This is what my Urologist had me do, and he and his technician
did/had me do:
1. Discontinue any type of aspirin or ibuprofen product for
10 days+, prior to the procedure, to lower any risk of
bleeding. Other products on a list of things I was not to
take were ginko biloba, vitamin E, Aleve, ANY vitamins, any
medicinal herbs.
2. Have a very light meal and then clean my lower bowel out
with a Fleet's or other water-based enema two hours before the
biopsies.
3. I was given Cipro antibiotic tablets, and was to take
ONE, one hour before the biopsies. After the biopsies I was
to continue taking Cipro for three days (twice a day), drink lots
of fluids, and watch for bloody urine and if any fever developed,
of 101.5°F (confusingly one piece of literature provided to me
said 100.4°) or higher. MORE on this later....as I had a
problem, a serious side-effect problem, from the biopsies....most
folks do NOT.
4. I was assigned to tiny room at the doctor's office, with
the usual patient's table, and some equipment in the
room. I undressed, and lay on my left side.
First a technician inserted a small probe through my anus into my
rectum. This was not painful in the slightest. He had
an ultrasonic display that one has likely seen on TV
medical or other shows that show a baby in the womb...etc.....and
he had a recorder for that information, and used this probe to
'map' the size and location of my prostate and make lots of knob
twisting adjustments on the machine. This took maybe 5
minutes. Then came the biopsies. Some
doctors will have an anesthetic gell applied.
After the mapping mentioned above (I found out later, because I
asked, the size of the prostate was 49 cc, I am not sure if that
means anything for ME), the Urologist came in and fiddled with
the probe. Attached to the probe was some sort of biopsy
needle. My understanding is that this thing is LOOONG, and
about 0.050" in diameter,... I can't say, I did not
see it. Probably best not to see what is behind you (sorry
for that pun). It is fashioned, I think, into
something called a biopsy gun, and the doctor positioned this
item, then called out...for my benefit...'1....2....3'...and
there was a popping noise and that needle jumped into me.
The needle goes right through the rectum into the prostate.
I carries whatever nice germs it can, right along with it! That
was why the doctor had me take CIPRO before...and for the next 3
days. I can assure you that YOU probably would prefer this
rectal method rather than another method I've read about that is
in use, for prostate biopsies....through the penis. I've
NOT had that done, and I feel very squeamish about even reading
about that procedure! The first biopsy tissue taking sample
was only a bit painful. 5 more followed. By the last
one, it was definitely UNcomfortable, and I was
wincing. I would NOT have liked a
dozen. NOTE:
Sometimes a strong anesthetic gel is used, and there is no pain
to speak of. Some men are more sensitive than others to
pain from a biopsy. Sometimes during a
biopsy a small vein is punctured, or a surface hemmorhoid,
etc....and you could have a small amount of bleeding for a short
period of time.
This was NOT screaming pain though, and the doctor used no anesthetic gel, that I know of. The entire biopsy part was over in maybe three minutes. Would I do it all over again, knowing what would happen?.....I sure would. At least now I have a chance at living out my normal lifetime. In fact, I have changed my exercise routines and diet, and may well live even longer.
The Urologist said that if I felt OK that Thursday afternoon after the biopsies, it was OK to drive 130 miles and go visit my girlfriend. The coming weekend was her BMW motorcycle TechDay, a function of a Club we both belong to; and, I surely had promised folks I would be there....and I had a trunk full of tools with me. I had been greatly looking forward to this BMW TechDay, meeting some folks I had only e-mailed with, ETC. I had promised to supervise some things, including an engine crankshaft main seal change. I never got to do hardly anything but meet two couples. I never GOT to the barn where the TechDay was............
BECAUSE......
I left on the 120 mile trip to my girlfriend's place
that same Thursday, feeling just a vague internal
soreness. BTW, contrary to one side-effect POSSIBLE
with the procedure,...I never did urinate any blood.
Ejaculate was another story...brownish (of course,,, red blood
plus white semen) per episode, for a couple of
weeks. Right hand curiosity, I guess. ( Doing
that before leaving for her place was, in hindsight, truly
stupid...never seen it mentioned anyplace, but surely the
contractions were not good for the prostate, ETC).
I felt reasonably OK...just not QUITE feeling
right on Thursday evening after I arrived at her house. I
started to get some not nice symptoms on Friday. I was
getting sick. I started running a very low fever (it never
got over 100.4), and then after midnight I started to get more
seriously ill...with chills, below
normal temperatures, weakness, dry heaves,...etc. I could
not understand an infection (which I guessed at) that had chills,
no real fever (my temperature was considerably BELOW normal
mostly)...but I knew I was getting quite sick. I'd always
thought infections meant high temperatures. So much for lay
persons information/beliefs.
Saturday morning, she took me to the nearby Scripps Hospital
branch. They ran a few tests, including a culture test that
would take 3-5 days, and then hung a bag of strange name
super-powered antibiotic into my left arm. Not long
afterwards an ambulance took me 22 miles or so to Kaiser Hospital
in San Diego (Kaiser was my insurance carrier). The Kaiser
doctor decided I needed to stay, enjoy hospital food and other
privileges...and hung lots more bags of various antibiotics into
me. MEANWHILE, as mentioned, some tests run at Scripps, and
I think some done at Kaiser, would not be available for several
more days. Getting those tests results and follow-ups, are
a story in itself, I won't get into it.
I was discharged from Kaiser after a few days, Girlfriend
picked me up, and I was STILL taking what KAISER said to, that my
Urologist had also said to take; CIPRO. In fact, during my
discharge from the hospital, Kaiser gave me an Rx...to get
filled....to purchase a nice large amount of Cipro;...yep, same
drug that did not work at the time of the biopsies and
afterwards...hmmm.... of course, that
information was not fully known, THEN.
I was feeling well enough from all the
residual IV hospital antibiotics to drive myself 12 miles, to a
nearby Kaiser drug sales facility near my girlfriends house, to
get that Rx for a large bottle of Cipro.
The Kaiser doctor's office got hold of me after I returned home....sometime later on...two or three days I think,,,,, and said to get off CIPRO...and take cephalexin (Keflex). Cipro, 'every doctor's favorite prescribed pricey drug', was the wrong medicine for my bug, per the culture/tests. Of course, they never came out and SAID that. I, of course, being the total person I am, procured the test results myself...fun and games getting it. The tests showed my bug to be e. Coli (of course!), and CIPRO....and several other antibiotics that were tested against MY particular version of this bug, were ineffective, per the report I finally got. The cephalexin worked fine. If they had not caught this paperwork, one I hammered at getting, and if I had not gotten the message (ANOTHER story I am not getting into) I would have soon been back in a hospital. What I am saying here is....do your homework and your own follow-ups, when dealing with insurance companies, hospitals, doctors, etc.
The biopsy samples had gone to a pathologist for interpretation and the pathologists 'estimation' of the "Gleason Score". Mine came back, quite some days later....as: "3 + 4 = 7. NOTE that this was THIS pathologist's report, and that this was of biopsy tissue taken well BEFORE my surgery. That 3 + 4 = 7 is borderline between fair and not good. Anything from = 8 upwards is BAD.
The written report came back as: Adenocarcinoma
of the prostate. The Gleason Scoring identified
cancer in two lobes of the prostate, and with techie stuff
about how much % in what lobe, what area.
One of the samples came back a bit suspicious, for another
type of cell, possibly from the prostate capsule being
breached; and, the doctor started arrangements for me to
have a Nuclear Bone Scan. My suspicions are that the
Nuclear Bone Scan test was partly a
save-the-doctor-from-being-sued if he did not, type of
test. Theoretically, that Bone Scan test will show if
PC has spread into major body areas. In fairness, however,
the test DOES help the doctor to 'work up' the disease
staging. They never did, upon surgery, find any
cancer cells outside the prostate gland.
Finally after hassles over WHO would do it, and WHEN it would be done (another story unsaid), I managed to get the Nuclear Bone Scan. This whole body scan, totally painless, is done by first getting an injection of a very short-term acting radioactive element into an arm vein, coming back after 3 hours, and then lying flat and quiet in a huge machine for nearly an hour. It is something like an scanning X-ray. Bones take up the radioactive stuff more than regular tissue, especially cancerous bone. The results do NOT mean that no small groups of rogue PC cells were circulating in my body bones, taking up bad residency; just that the ODDS of it are less; or, rather, that it was not extensive enough to show up.
The results, a week or so later, came back negative for the
Nuclear Bone Scan. At this point I
knew that I had prostate cancer, had had it for awhile, it was of
modestly high grade, and needed treatment.
The decision problem was WHAT
treatment. It was up to ME
to decide on the treatment, once having learned all I could about
WHAT treatments were available for my
specific situation/tests/etc. My doctors
were good at telling me the options. Better to be
over-informed. THAT led to a tremendous amount of reading
of various books, recognized official sources, purchasing a
paperback of nearly 500 pages authored by a well-known expert in
the field, ETC...lots of ETC. The Urologist had also
given me a mess of literature to read. I had already been
researching official, knowledgeable websites of several prostate
cancer and general cancer organizations, sending for literature,
etc. I did a LOT more of it. I went so far as to talk
to doctors who were prominent in the field. I knew plenty
of medical terminology, knew my way around doctors, so got some
darn good information. Even
today I keep up with it, and am still a subscriber to printed,
snail-mailed, information from a couple of sources, including the
American Prostate Society.
SOME
information is just not presented in such a way that laypersons
can understand it....and I am a trained engineer with a
wide-ranging technical background. Some information
is JUST PLAIN WRONG. You are reading the benefits
from all my reading, discussions, and skepticism.
I talked to my Urologist; and, as recommended by
EVERY book I'd read, asked for a second
opinion, this time not from a surgeon, but a
Radiologist-Oncologist. My reasoning was simple:
There are three ways to treat MY
cancer situation and results of testing. I was either not a
great candidate for other options (like radioactive seeds), or
many options were for more advanced or far advanced cases.
My options were:
1. Do nothing, assume I will die of something else, or hope
for new techniques and cures to be developed later
on. In MY estimation I was too young for these
options, and my Gleason Score too high.
2. Beam radiation of one sort or another. This scars
you so much inside that #3 below is not a later option for most
surgeons, as there is usually MUCH greater side-effects and
complications. Some types of radiation are FAR easier
on you, if you have to choose radiation as treatment.
Investigate carefully. Conformal beam, proton beam,
blah blah...lots of radiation methods. This category
probably should include the radioactive seeds
methods. There are a number of things being
done, including freezing, etc. None of these things fit me
well. I will have a lot more to say about radiation in this
article.
3. Serious surgery...two types are available. One
type is less invasive and you heal faster, BUT it
is far less dependable for a cure, for a variety of
reasons. I opted for the radical
procedure, done through a goodly incision down the belly.
The word 'Radical' as used by doctors does not mean what you may
think. Here, it means TOTAL removal of the
prostate. This allowed for a variety of
treatments following the surgery, IF they should be necessary. The
method I chose was the 'Gold Standard' for treatment in my
situation, but the recovery period was likely to be longer, and
longer yet due to my age. OR, so I was informed by all the
literature (the BASIC recovery did not really seem longer in any
respect, to what I'd read, maybe I was just in better shape to
start with, or the doctor more talented).
My regular general MD wanted to see me on a pop-in basis to discuss treatments; we did that on April 15th; and, my regular test for blood pressure and cholesterol (all excellently low). The PSA came back higher, at 6.4. THAT could have been higher due to my having masturbated to check the color of my ejaculate the night before the early morning fasting blood test (yep, I FORGOT about the effect of orgasm on PSA). Then, again, I do not KNOW what the effect WAS, only that an effect was possible. A BIT more worry now......PSA's over TEN (10.0) are BAD news....I wanted treatment long before 10.0!
Appointments were made for a formal second
opinion with the Radiologist-Oncologist for April 19th. The
Radiologist-Oncologist was quite frank, quite friendly and
informative. It surprised me that HE FIRST brought up the
option of surgery, radiation afterwards IF needed...as probably
the best for the widest range of options for ME. I had
expected a surgeon to promote cutting, a radiologist to promote
radiation. I did not get self-centered pressures from
either of them. Amazingly, so I thought, this also
was the case with two other medical-field folks I consulted via
E-mail. I have information that
says you may not be so lucky, so be cautious.
After meeting with him, I had pretty much decided upon
surgery.
Lying down to go to sleep, or the time in the morning when one wakes up but is not yet out of bed....those are the especially difficult times that my brain was on overtime, worrying about things. AND, yes, I was worried. I hated the idea of having to decide between TWO treatments (surgery or radiation) both of which were highly distasteful. The worrying, thinking, whatever, was distressful. Distasteful and distressful are hardly the correct words. I was scared some of the time. About once or twice a week in the time all the consulting was going on and well before surgery, and when my stress reached a very high level, I would chop up a Valium pill into 4 pieces....or even 6, and take one teensy piece before bedtime. 2 mg did wonders for my ability to sleep for 5 or 6 hours. As I told a friend, or two, 'I would rather be back in combat, than have the surgery'.
I met with my Urologist 3 days later. I now knew enough to tell him, after some prior Internet searching about his qualifications & track record, what I wanted to do. I talked with the Urologist about his method of surgery and decisions in the operating room based on pathology reports, etc. I made the informed choice before meeting with him that HE was going to be MY surgeon; if surgery WAS the decision.
In my questioning of the Urologist...which was fairly detailed, he told me that he does not use hormonal therapy before the operation, in my situation. I found out why after reading more, as some books HAD mentioned it being used. The definitive books explained that using hormones prior to surgery might make the surgery a bit easier, as it shrinks the prostate, but it also can hide things from BOTH the surgeon and especially the pathologist who will examine the tissues! It appeared my prospective surgeon was quite on top of every technique, as I questioned him about that, and other things.
I now wanted to crawl into a hole and make it all disappear.
At this point, a discussion of treatment options is needed here. NOTE that there are a LOT of various treatments...and the type (hormones, surgery, radiation, chemotherapy...and on and on), depend on one's particular situation and condition. Basically, for ME, I had what I believed to be GOOD options, but without surgery, we'd never know the TRUE extent of the cancer.
Radiation (of all types): It is generally thought of as 'you get one try' at this. Starting with radiation treatment GENERALLY will keep you from having surgery later, although some doctor's might be convinced to do 'salvage surgery' if the radiation fails.....but the risk of side-effects after such salvage surgery are far greater than if the surgery is done first. Beam radiation can always be done AFTER surgery. Some people are not candidates for surgery...due to age, advanced cancer, etc. Some cancer victims may have an advanced PC that indicates radiation is not a good idea. There are several versions of radiation available (that includes radioactive seeds, etc., that require simple surgery to implant), and one advanced technique, multiple beam conformal type, WAS available locally. It is done daily, 5 days a week normally, for about 5 or more weeks. The reason it is daily is to enable one to have continuing radiation to kill those cells that resisted dying and re-grew. You scar up inside, so you can't (or most surgeon's won't) have surgery afterwards if the radiation does not work. Radiation really is, to MY way of thinking, sort of like putting some of your insides on a grill and being browned. Possible side affects can be serious problems with urine and bowels. Impotence is a possibility too...and it tends to not show up until a couple of years later! (where the surgery shows that up right away, and if the nerves are left, one side or both, you may gradually regain potency). The advantage to radiation is that no serious surgery is done, and you are not going to have a serious surgery type of recovery. One additional DISadvantage to radiation is that you won't know if your cancer had spread...unless other tests were done, and SOME tests, such as pathology of a removed prostate...(or removed lymph nodes usually)...are not part of radiation treatment. The 'BIG' disadvantage is that if radiation fails, your options are more limited to the serious hormones, chemotherapy, etc., as used for an advanced cancer patient. As mentioned, most doctor's will NOT even attempt a prostate removal after radiation treatments...it is messy, hard to do, and serious side effects are FAR more likely. If you are having trouble making a decision about radiation versus surgery, do keep these things in mind. If you need serious treatment, if you are not in reasonable physical condition to withstand serious surgery, radiation MIGHT be best, not necessarily THE answer. So there are lots of treatments, including surgery, hormone suppression, various types of radiation....and combinations. One common treatment for those opting for radiation is radiation first, and then hormonal treatment if the PSA starts to rise again.
I decided that leaving hormones and radiation for AFTER surgery (IF necessary) was THE way to go.
After my surgery, and continuing, I have rock-bottom PSA, in case you wanted to know, and likely will never need more treatment. I HOPE.
Surgery:
very serious bloody surgery, sometimes lasting a few hours. Good
idea to give two units of your own blood (called Autologous) well
ahead of time, although your surgeon may also use a 'cell-saver'
during the operation. DAYS (2-3 typically nowadays)
in the hospital, long recovery (weeks) at
home. Probably 'drains' coming out of one's abdomen
for a short while (usually removed before leaving the
hospital). PLUS, a plastic tube (aka catheter) annoyingly
and CONSTANTLY up one's penis for a fair amount of time (2 weeks
+), while you heal internally. Having a urine collection
container strapped on your leg so you can be mobile, or a larger
type carryable around the house. Before and after the
catheter is removed, you must learn to use the bladder as the
hollow bag muscle it really is, for keeping your urine inside
you, doing Kegel (key-gull) exercises . Probably have to
wear urine control pads or briefs or whatever type of continence
control product you will prefer... for awhile... as you
retrain muscles..... even well into the future, maybe
forever, may still dribble some if lifting something heavy, or
otherwise straining...and hence wear a Depends or similar
pad. Some very few patients never recover good
control.
For myself, I did not know if my adult lifetime of ALREADY
doing Kegel's would help after the surgery (yep, those exercises
that enhance orgasms....I'm always for better orgasms!!).
SO....you also, if smart, do Kegel exercises!...before and
certainly after surgery. Frankly, Kegel's are great for
one's sex life, cancer or not! After cancer treatment by
removal of the prostate gland, your should understand that your
bladder itself is one big muscle, and you can train
it. Hopefully you will develop muscle control
at the lower part of the bladder (your surgeon will CUT the
urethra and CUT the lower part of the bladder away, and SEW the
remnants together...and it is critical just how this is
done). You also are very likely to be
impotent, that is, have no MENTAL ability for erections, which
could be forever if your surgeon had
to remove the nerves (two sets, they run along the outside of the
prostate). YOU might be lucky and keep one or both sets of
nerves, and they might even, after all the bruising of surgery,
work properly, or sort of, later...maybe much later...up to 2
years later in some cases. Whether to remove the
nerves or not is something each surgeon needs to decide when he
has you open...and you should discuss
it before surgery. I think most surgeons will
remove the nerves if they stick to the prostate; or, there is a
question about the spread of the cancer.
I was lucky, I kept my nerves. I
looked forward to them working again, we have a long familiarity
and life together, I intended to keep that relationship.
They seem to work now, not as well as before.
*****It is very clear from many
years of clinical experience, that even when nerve-sparing
surgery is done, that the nerves may take up to 2 years to begin
to work again. Thus, if a man has his prostate
removed, and the nerves are spared, there IS a good chance of the
nerves working again....but you MUST BE PATIENT!! Many men
find that 18 months is needed, some a bit longer.****
Vacuum pumps and Viagra, etc., do work for most (NOT all) men if the nerves are gone or seriously damaged. In any event, typically 'they say' you retain your sexual physical feelings and ability to have an orgasm (so long as your cancer does not advance and you have to take hormones). Some chit chat I have had with some who have kept their nerves tends to show that your retention of sexual and orgasmic feelings will be GREATLY lessened, particularly in the first 6 months or so. If you ever have orgasms, they WILL always be DRY orgasms. Your orgasms will NOT be the same feeling as before. You are not going to father any children, as the ducts from your testicles are going to be cut and tied off. Sort of a vasectomy, done higher up. The ability to have an erection by stimulation may be with you naturally, or not, depending on many things, but Viagra, Levitra, Cialis, etc., will usually work, once you find the proper dosage. You are fairly likely to have a shorter erect penis.
Surgery is 'THE Gold Standard' for treatment. Side effects are the usual post surgery items, but also incontinence; impotency, death (unlikely from the surgery itself, but one rarely might here of someone having a blood clot in a leg that travels to the lungs), and a host of other nice things. My Urologist informed me that he would have large long cuffs, driven by a pump-motor under the hospital bed, put on my legs after surgery, that are inflated and deflated at short intervals, to help prevent blood clots. He uses general anesthesia, but with pain medication fed to the spinal area afterwards (epidural anesthesia). The surgery is QUITE serious, CAN be lengthy, and the older one is, and the worse one's physical condition, the more chance of problems....not to mention the surgeon's skill at helping you not end up with incontinence and erectile non-functioning worse than they could be. It helps to NOT be fat and out of shape! The chances of the various side effects are also highly dependent on the ART/technique/experience of the particular surgeon. Obviously it also depends on how far the cancer has gone, so some fair portion of all this will depend on the extent of the cancer that the surgeon and pathologist find, in the hospital at time of surgery;....and, that particular surgeon's approach to dealing with what he finds. Surgeons want to take some extra tissue (flesh!) around the prostate, to be sure that there are no or few cancer cells left anyplace. As usual, they have their own word-speak, and 'good surgical margins' means no infection found in the tissues surrounding, that they remove. Or some such interpretation. They may also use terms like negative or positive surgical margins. You can AND SHOULD ask your surgeon/urologist how he deals with things he finds, do this ahead of time, and be sure you both are in agreement!
BUT.....how do you find out about YOUR surgeon's competence and abilities? hmmmm. In my situation, I had no hope of traveling to Johns Hopkins. Johns Hopkins Hospital has a terrific reputation of doing great work in the area of Prostate Cancer. It would be a first or near first choice by me for treatment if circumstances had been different for me. But, that does NOT mean I am 100% happy with everything that comes out of that Hospital....... I have read some disturbing reports on statements made by a certain doctor at Johns Hopkins in March of 2003 (not directly PC)...in which this doctor was seeming giving wrong, highly inflated that is, data in statements on TURP procedure results; and, worse yet, regarding a treatment called PVP, he seemed to be making derogatory statements not founded in fact. My conclusion was that he had a personal interest in promoting certain methods. You can obtain a summary of this in the Volume 9, Number 2 Summer 2003 UPDATE of the American Prostate Society. Source cited at end of this article.
I also was not about to trust the diet of Michael Milliken, who supposedly licked his serious prostate cancer by a radical diet change. I did some internet searching, talking to other doctors, etc. The Radiologist-Oncologist that I consulted for an examination and second opinion was very direct and friendly and informative; he even gave me the information that MY Urologist had done HIS kidney stones...(and vasectomy, when I mentioned our conversation to my Urologist). Nice little club. I PAID for research into my Urologist's qualifications and standing. I also talked to just plain folks, finding these on my own. I did NOT ask the Urologist for a patient list. You could. I found some folks that knew of some of his patients. Nothing but good things to say from any of them. I gave weight to input from the Radiologist/Oncologist who had had this same Urologist work on him; and particularly I gave weight to the referral by my primary care physician....a doctor for whom I have the very highest respect; I REALLY lucked out when I selected his name originally when I changed insurance companies. IF I had not been so confident of these folks, and other inputs, I would have been even more aggressive about looking into my Urologist's long-term success.....and failure.....rates. Words to the wise, for YOU!!
Some surgeons will not continue the operation if the lymph nodes (removed and checked by a pathologist while you are on the operating table) show cancer involvement, some will if the involvement is small. My Urologist and I agreed that the prostate removal surgery stops if a node shows serious cancer. If the surgery is stopped after pathology shows lymph full of cancer, then you have only radiation and anti-hormones (or castration) left as good treatments. Serious lymph involvement almost always means the cancer HAS spread. Cancer in the Vas Deferens is not limiting...so I understand. Surgery just to remove and examine lymph nodes is sometimes done in combination with the other type of prostate removal, called the PERINEAL approach. Getting to and removing the lymph nodes is a fair procedure in itself. IF one's age and physical condition permit, I am NOT much in favor of the perineal approach, only the retropubic approach. Note: the pelvic lymph nodes are the first place PC usually spreads to. Once well-established there, the cancer has probably spread elsewhere's, and removing the prostate might well not help you at all, and make things somewhat worse....the surgery is MUCH more extensive to finish the surgery to remove the prostate. That is why the surgeon may want to stop if the lymph are infected badly.
Prostate cancer is FED by testosterone, the
hormone that, in many ways, makes us men, men (did you know that
women also have small amounts of it?). In later, more
serious stages of prostate cancer, 'anti-hormones' (generic slang
used by me here) are used (or castration, removal of the testes)
to slow PC growth after it escapes
the prostate...and in some cases, before. Those
escaped PC cells get into all sorts of things in your body
eventually. NOT all testosterone is made in your
testes (balls).
UNfortunately, SOME cancer cells are not affected by the
elimination of testosterone, those hormone INsensitive cancer
cells keep growing. The
percentage of hormone sensitive versus hormone INsensitive cancer
cells varies with individuals. Dying
from prostate cancer is VERY unpleasant
to contemplate. The cancer spreads, and likes to take up
lodging in bones, where it creates intense, hard to get rid of
PAIN, that requires rather high doses of opiates, so high that
you don't get to have much of a life. It can also spread
into all sorts of other areas, wreaking havoc.
Because of the sensitive and not-sensitive nature of the cancer
cells....and the percentage of each of which varies....cancer
that has spread is never treated with the idea of being a
cure....at least that is unlikely, probably for the foreseeable
future. The idea will be to SLOW the cancer
growth. Sometimes the slowing can be a fairly large
amount....but also all too often one dies altogether too quickly.
Knowing myself as well as I do, I decided that
just facing up to things, early on (facing up to, is NOT decision
making as to treatment!), and sharing my feelings, and
information, was what I should do with my friends, and even with
those I barely knew, if they asked. I also made some
minor hints about things with the Airheads LIST, and
others. Some of this helped reinforce my
resolve. My girlfriend was helpful, and it was
through a friend of hers that I found out about Dr. Walsh's book,
and she even took me to the store to get a copy. She
borrowed it for a short while after I'd read it through the first
time, so she would be better informed. Each piece of
literature I read helped me to understand other pieces of
literature. Questioning my Urologist, and the
Radiologist-Oncologist, answered nearly all the rest of
sub-questions. I also contacted several Prostate
organizations/groups, etc. Walsh's very thick
paperback was the best, generally, of all the books....including
those on loan from my Urologist. Walsh's book explained
quite a few things where other books and literature confused me a
bit here and there. Walsh's book also added much
information. Some prostate organizations
also had some literature available, I sent for those things, and
some was quite helpful. By reading it all, one gets,
FINALLY, a nearly full explanation.
Some final information was only obtained
by some dogged investigation, and talking to some experts in the
field....do NOT take this simple sentence lightly.
My biopsy Gleason was 3 + 4 = 7. My staging at that time was some type of T2, my Radiologist guessed at T2a. The Urologist said T2. What I worried about most was if the cancer had spread. Lymph nodes. Bones. The Nuclear Bone Scan is known to be IN-accurate about 25% of the time. There are other places besides bones. Here we go, another place for worrisome percentages! What I was not worried about was erection problems....well, not overly. I was more worried about incontinence after surgery;....a very FEW men have permanent problems in that area. I was only modestly concerned about dying of prostate cancer....concerns about an early, ugly, death, would be dealt with AFTER I did whatever treatment would be the initial choice. Men vary in what they worry about. I wanted to stay alive, in reasonable happiness, and think about retiring and riding my motorcycles, and having some fun. I'd worked hard a large part of my life to prepare for retirement. Now was not the time to shrivel up and feel sorry for myself.
UNfortunately it WAS now a time to worry, have some sleepless nights, and have to make serious decisions. It was also a time to deal with doctor's, hospitals, labs, and....medical insurance company.
I honestly did not truly feel...mentally....like doing anything but hanging around the house. Luckily, my girlfriend tended to get me off my butt. I spent the Easter weekend with her, we went to Church services; we went to Del Mar to see The Night Of The Horse, eating a picnic 'dinner' right at the show;...GREAT SHOW; and we attended Easter Sunday services outdoors. We had Easter Sunday dinner with her family. I drove back to my condo in Palm Springs mid-evening that Sunday. I had intended to go back earlier, and spend some time alone, thinking. Probably just as well that I did not spend much time at that.
OK...back to Monday morning, April 21st, 2003, ...this was my decision day. THIS was the day, the appointment at my Urologist's, at which I was to STATE VERBALLY my choice of treatment. I was under a LOT of stress. I was nervous. I had a sour stomach. I had made my decision (mostly) weeks ago, and that decision was firmed up on Friday. I was now mentally committed to a certain course of surgery. Now it was Monday morning, in every sense of the meaning of 'Monday Morning'. The Urologist and I got along better than before, he'd always seemed a bit ...well....not the greatest bedside manner. He never did gain any such. Just his way. Some doctor's keep their distance that way, they are taught about such in their schooling. Sometimes I contrast the Urologist with my primary care physician, in that department.
We had a good discussion. I never did tell him how freaked-out I was, and had been. I did tell him that my decision was to have him perform the radical retropubic surgery, as soon as he could arrange it. ((note: the surgery was actually scheduled for a later date than I really wanted, but this was LIKELY in line with the 6-8 weeks of healing after biopsies, that are typically wanted by the doctor)). We discussed what would happen, what his 'policy' was as to lymph node involvement (I got the idea that I could not affect that, if I had wanted to, but we agreed anyway). We discussed trying to save the erection nerves only if safe to do so, and several other things. I agreed with his view and policy that if major lymph node involvement was seen, that the surgery would be stopped, and I would then, after a month or so, be going to the Radiologist-Oncologist. I mentioned that if all went well, the surgery that is, and yet the PSA began to rise again at some later date after surgery, the Radiologist-Oncologist was the backup treatment; this was agreed to be THE way to go. Luckily, I never had to do that.
With the surgery option taken, and the major important details agreed upon, at this point it was now up to the Urologist's office to get an approval for the surgery from my insurance carrier. Then we would obtain a surgical date. I was to 'donate' blood, for myself. This is called autologous blood. I found out from the surgical report after the operation that I had lost an estimated 600 cc of blood, about 200 of that was returned to me. After the surgery, during recovery, one of my units of blood was also returned to me. Approval for the autologous blood drawing was needed. Medicare, not the insurance company, was involved with autologous blood donations. Details, details. The biopsies area was still in healing mode, the cancer likely slow growing, so the books said, so I understood why the surgery was not put on an emergency basis, but I was still very concerned about having this 'thing' in me, cancer, growing. I wanted it OUT of me....yet I HATED the METHOD of removal! Actually, I did not like thinking about it all.
I was to have three weeks before the surgery to have my two (2) self-donated (autologous) blood units collected...the Blood Bank literature says they hold blood for 42 days, but the Urologist said 3 weeks. Never found out about that discrepancy. I thought about that schedule and with a look at a calendar, I decided to have the blood taken a week apart, then to have 8 more days before surgery, to allow my body to rebuild my blood before the surgery. They were to call me when I had approval for the autologous blood-letting. I had to follow up on this rather considerably. Frankly, I found that I had to follow-up on a lot of things for myself. Meanwhile, I had already started taking iron pills, two per day per the Urologist. Iron pills can be very constipating. Plums and other natural fiber containing foods (particularly strawberries!) are tasty though. I went back to my Tahoe home to do many things, as my next trip to the condo would likely be the trip for the blood-letting, then the surgery, and then a fair amount of recovery time.
Finally I had a confirmed date for the surgery, May 20th, 2003. I then arranged for the blood-letting for May 5th and 12th, which set the schedule up exactly as I thought it should be. I stopped taking the small amount of aspirin that I normally take every day, to lessen surgery area bleeding, which makes things complicated for the surgeon.
I now had things to do like an updated Will and a updated Durable Power of Attorney for Health Care. I finished those on May 1. I returned to Palm Springs on May 2, 2003. I quit taking vitamins. Now I was off aspirin, off vitamins, but still on iron pills, luckily I happen to love strawberries, strawberries were easily and cheaply available, and I was now eating plenty of them every day, and intended to continue that. I found it VERY wise to continue that for some time after the surgery. I wondered idly if strawberries were deductible as a medical expense (seriously, medical bills have to be a VERY high percentage of income before having ANYthing deductible, and you must subtract payments made by medical insurance). Between the iron pills and my living a fair amount at high altitude, I suspect I had quite a red blood cell count.
May 4th: No alcohol. Contrary to even my own self-appointed reputation as liking dark brews and single malt Scotch's, I don't really drink much, nor often. I hadn't smoked a cigar or my pipe in so long I can't remember when...did not feel like it....and am sure nicotine is not a good thing for me, especially now (I don't inhale tobacco smoke anyway). Except for about 2 or 3 ounces of wine a couple of times in the last weeks before surgery, I seemed to have lost any appetite for alcohol. Probably the stresssss...ah, yes, stress. All sorts of things ran though my mind at times. I thought about the surgery when I lie down at night to go to sleep...and sometimes when I wake in the morning before getting out of bed, and sometimes for no good reason I can think of, during the day. I have a sour stomach in the morning at times, likely from all this thinking. No wonder my appetite for beer, wine, Scotch, and a good cigar was in remission (I was sure it was just temporary, it was not)!
May 5th: Preparations for the surgery begin more seriously. It is time to go to the Blood Bank, deal with paperwork, insurance, Medicare (blood bank gets paid by Medicare), and ...oh yes!.....giving a unit of blood. Giving a unit of blood takes 12 minutes of paperwork for the first unit (2 minutes for the second one a week later), and 4 minutes of nurse preparations, and 5 minutes of totally painless blood-letting while one could, if one wanted to, suck on a bottle of water. If you want to, you get to look down from your reclined position, see the complicated looking plastic bag being rocked back and forth by the machine it sits on. During that first unit draw, I remember wondering about the Heparin, an anti-coagulant, that they put into that blood. What would happen if that was put into me at the time of surgery...or afterwards?....would I tend to bleed more? Would the heparin in that blood unit defeat my being so careful not to take aspirin? Never did ask about that. Probably would not affect things, way more than one unit of blood in a human, the one unit would be diluted greatly. Maybe. Still curious. Maybe some day I will ask someone associated with a blood bank. OR a doctor. Or both.
After the vampire attack, I got off the blood-letting table and....THEN...I got to go off any diet I might have been on, and enjoyed what snacks were there for me, as I was informed to sit for 15 minutes, in the lobby in my case, so they are sure that I was feeling OK. I felt just fine, and treated myself to a 'single serving package' of chocolate chip cookies (TWO, huge, in one package), and a half cup of cofffffeeeeee, plus the water. Orange juice, soft drinks, other bad sugary things...all there, waiting for the appropriate taste bud(s). I noted that two other people, who were snacking like I was, tended to like the same chocolate chip cookies.
May 12th:
Time for another Unit of blood to be drawn by the kindly vampire
assistant at the local BloodBank. On this second
visit, they said nothing about the lobby waiting period after my
substance removal. I did it anyway, as I was now an expert at not
only giving essence to their plastic bag, but in locating the
chocolate chip cookies... I ate all in one package of two.
I noted the various types of plaques on the wall....some were
pictures or maybe a name or more than one name, of some folks who
donated regularly...for use by other folks....Gallon
Club...etc. I'm not a Member. I'd like to
be, but I was exposed to a Malaria-type bug once, in a far-away
land.
May 15th:
Telephoned the Pre-op department at the hospital. Made an
appointment for late Monday morning.
Weekend: Drove 120
miles to spend some time with my girlfriend and see some friends,
attend the old motorcycle parts sale at Irv Seaver's BMW, and
generally take my mind off things.....sorta!
She would later meet me in Palm Springs.
May 19th: Off to the
hospital for pre-ops testing and lots of paperwork. Surgery
was still set for the next day. The surgery was
scheduled for 9:15 a.m....and I was to arrive at the hospital at
8:15 a.m.. Later in the day this changed, I was to arrive
at 7:45 a.m. The pre-ops is almost factory-like,
efficient, friendly.
I am not happy with things, I'd rather run away to the mountains, than face all this.
May 20th: Within an hour of arriving at the hospital....why is surgery always scheduled for early morning...when I am not ready for anything but coffee and the daily paper?..... I am under the knife. I found out later that that actual surgery took about 1-1/2 hours, prep and cleanup a made it bit longer. I was told the next morning, or was it later that day?....that there were no problems during surgery, beyond a dropping of heart rate (Bradycardia) in the Recovery Room, which they thought a 'Vagal' reaction (I won't try to describe what that means, just accept it as one of the anomalies or side-effects possible during surgery);....and as a precaution they sent me after surgery for an echo-cardiogram, which found nothing wrong. Just to be on the safe side, my surgeon had me stay in the cardiac area of the hospital just in case, until my discharge. You won't believe what the hospital charges for that care, and the surgery itself, and the other charges for such surgery. $80,000.00 +- PLUS the doctors fees. NOT kidding. I am sure that my insurance carrier ended up paying about half that. I would have, if I had the choice, stayed in my Urologist's favorite area of the hospital.....gourmet food, etc....
During the surgery, so I was told the next day by my Urologist, the 'erection nerves' slid right off the prostate capsule, not 'stuck or glued-like'. This meant that the nerves had no involvement and could be, and were, 'saved'. Maybe saved to work again at some future date? I could hope so (they do work, now). Sometimes 'saved nerves' don't regain function. It would likely be awhile before they could actually starting working again, the trauma from surgery 'does things to the body'. I have had conflicting reports on these nerves and how they repair themselves....or don't ...from any trauma, bruising, whatever, over time. What is true, is that if the nerves are left, undamaged except minor bruising, they have a good chance of functioning again. Radiation, on the other hand, usually leaves the nerves functioning FOR AWHILE, then KILLS THEM within 2 years.
Ah, yes, trauma to the body! I can
attest to that!
...I had, for about a week
after the surgery, hot flashes! Good thing I was
mostly INside the air-conditioned house....with the ability to
put on and take off clothes, instantly. It was
HOT in Palm Springs....outside. Doctor said that all sorts
of strange things could come about, temporarily, as the trauma to
the body resolves. I found that to be so.
I stayed in the hospital until May 23rd, I did not feel up to leaving on 22nd when asked to do so; this was my choice. I was barely up to leaving on the 23rd. Yep, they tried to rush me out, 49 or 50 hours after the surgery!!! Frankly, I still feel a bit of HMO type pressure on the surgeon had something to do with this, but this is pure speculation. I was at the hospital a total of about 80 hours. That's a billing of $1,000.00 per hour, averaged.
At the hospital I found my appetite near zero, could hardly eat, yet, with all the IV fluids, and drinking of water, and retention AND urination; somehow, ....I put on 10 pounds! I could eat only by forcing myself, a darn shame as that hospital has a semi-gourmet printed menu, and you order by phone! I was impressed. I kept a printed...in color with pictures no less, menu. At first I was on a thin liquid diet unfortunately, and the Urologist's order to go a regular diet got mislaid somehow...and I knew it had been changed, so I complained, and this was fixed. So, I got 1-1/2 meals, so-to-speak, before discharge, of quality gourmet food. Finally I ate eggs, yoghurt, juices, cereal, french toast. With the U.S. at some odds with the French, over Iraq, I idly thought it should probably be British Toast, but the British don't know how to cook properly. :-)
Shame I did not enjoy that special menu
much more. Still, I thought I would not intend to find any
special reason to go back and explore gastronomic delights at any
hospital.
I had a small drain (tiny tube) coming out of my lower
abdomen, usually called a JP drain, removed after a day and a
half while at the hospital. It fed a small squeeze
bottle...cute thing, it was like a perfume bottle, most are just
a very small plastic bag. It was emptied (and measured,
like all emitted body fluids) regularly at the
hospital. I still had the final Foley catheter,
#20 French for those interested, which I was taught how to use
properly (how to change between the large bag and a leg bag when
appropriate) before my leaving the hospital. It was mildly
annoying, not painful. It would likely be removed in about
2+ weeks (so I had read in the various books). I knew
that it was critical that the
Foley catheter remain in place while
the joining-suturing of the urethra and bladder heals. That
sutured place is the 'Anastomosis'. The Foley
catheter was held in place, (besides its internal balloon), with
a sort of, outside my belly, common clothes-type 'button',
with nylon suture material, said material leading inside into and
through the bladder wall, and tied to the
catheter. One of the annoyances after the
surgery, besides dealing with tender bowels, minor pain, and
strange symptoms, is putting up with the Foley, one must keep it
sanitary, at the penis-to-catheter junction, to avoid infection,
carry it with you---a must, since it is tied to you!....and empty
the bag, etc. Some doctors will have you clean the penis tip
area and use Neosporin or other antibiotic cream oinment
there. There is a small 'leg bag' for when one wants to put
on pants and move about in society. That leg bag never
worked particularly well some of the time. I went out once
and I had a nice embarrassing leak, from the Foley catheter well
above the bag area, at the penis tip. I simply grinned
(grimaced?) mentally; and, ignored what I assumed was every
person within a mile staring at me. No one stared of
course. Reminded me of the time I landed a small airplane at
Concord-Buchanan field, dressed in 60's paisley clothing
and....ooops.....another story.
Back at the condo, I avoided putting on any clothing except a large T-shirt, and some old Navy-acquired hospital anti-skid bootie-socks....even in my condo patio (the patio has very high walls). The reason was my extreme sensitivity of the incision/staples area to touch...especially the regrowing hairs...when touched, it was like needles...BIG ones. It was interesting to see the facial effects on those friends who visited me during that first week++. No pants, a shirt, a catheter, urine bag, VERY hugely swollen testes/penis, with a tube coming out of it, 6 inches of so of metal staples down my middle....you get the idea.
Depending on the visitor, I 'kept it all' somewhat hidden behind a robe;...my attempt at some sort of decorum and modesty. I don't have much modesty, never did, and even got some perverse pleasure out of my shocking appearance (of NOT keeping things hidden, well, mostly). Perhaps that attitude helped me heal.
To tell the truth, I'm the type that will not think twice about kissing my sweety with vigor, in public; nor, think much about my usual summer attire....old Levi cutoffs, very short, very old, very tattered. It helps to get away with this by being physically gym-toned. Wearing this type of clothing and a raccoon hat on one's head when camping in the woods...tends to get one a reputation....of some sort....or...whatever....
I have a modicum (or MORE than a modicum) of perverseness;...among my other great attributes. AND, I suppose, some of the almost gallows-humor helped ME deal with the situation.
NOTE that whilst I have described my symptoms, complaints, and so on, during my recovery, YOURS will likely be different, and MANY patients after this surgery have almost no symptoms other than some internal pain, swelling, and the need for Kegels training.
In the hospital, pain was wonderfully managed by the teeny catheter in my back/spine (epidural anesthesia), but the day before release day, I was put on small amounts of codeine, the back attached catheter removed. I think, with hindsight, that the catheter in my spine should have been left in another day, until my actual release, which should have been the FOURTH day, not morning of the third (and they TRIED to make it the second!). There are seemingly no side-effects to that catheter method. I did NOT suffer any headaches, which I had always heard was a possibility with 'spinals'....I was told THAT was UNlikely for this particular type of spine-fed anesthesia, especially for adults, even for someone like myself, who has had migraine-like headaches for decades. It was true, I got up the next day at the hospital, walked around, had not the slightest headache....nor were my legs, etc., feeling any numbness. I was VERY sore, and found it difficult to do that walking though, but I forced myself, knowing it was very good for me, and the staff thought it OK that I wanted to.
All the I.V. connections were removed just before
I left the hospital. One side-affect I had
while at the hospital, was a very bad case of gas pains, that was
not cured immediately by taking anything for it, and I gave up on
taking anything for it. I actually think these gas
pains were far worse than any pain
from the incision. Except if I coughed.
The gas pains seemed to ease up on the last hospital day, and
mostly disappeared after I got home, then returned somewhat, then
disappeared about the 5th day after surgery.
For about a week+ I was fairly
UNcomfortable sitting. That finally disappeared
totally as I approached the third week. However, some slight
internal feeling...in the rectal area, lasted for a couple of
months. For the first two weeks I was not happy
sitting at my computer. I was also well aware
that I should not sit in one place for long, to avoid Deep-Vein-Thrombosis.
I did foot exercises all the time, to pump blood
around. The window for DVT is
from the time of surgery to about a month, with the first week
and a half as the most dangerous. In the hospital,
constantly inflating and deflating cuffs on my legs were
used. At home, I did those foot exercises....and
walked.
Re-cooperating at home was in some ways easier than at the hospital, in some ways more difficult. The hardest part, in the beginning, was the same as at the hospital (even with the hospital's very fancy adjustable bed)....getting into and out of bed...or a couch. There was also the mentioned sitting in my computer chair...and even when standing up for any period of time. I did, after all, have an incision, a big one, and a whole bunch of me had been seriously cut, INside. I had Tylenol with codeine for pain, which I used in rather small amounts for ONE day. I chose to have a bit of pain, not all that much really; because avoiding constipation was a constant concern, and I did NOT want to use the codeine, which is very constipating, and there are no good substitutes for opiates for me. My method of choice for constipation was high fiber fruit, and that meant massive amounts of strawberries; and, of course, lots of water. I also ate bran cereal, and live-culture yogurts. I treated myself to fat-free bran cookies at around the second week+. I am the sort of person who will find all sorts of ways to skimp on $ for some thin