PART 20 of My PC Adventure – see full story HERE>
Having prostate cancer could be a terribly lonely experience, if you let it.
Sounds ridiculous to say that, doesn’t it.
After all, prostate cancer is scarcely a rare disease. In fact, it seems like an epidemic when you start asking around. A lot of famous people seem to die from it.
On any given day there are millions of words written about it on the ‘net.
There is a fully-developed medical structure for dealing with it, and each year there is a well-publicised fund-raising campaign which persuades young men to grow awful moustaches for the cause.
So what’s with the “L” word?
Well, think on this.
If I’d just had a triple by-pass heart operation and did what I did today – climbed to the top of Wellington’s Mt Victoria - people would be saying “Hey, you’re looking fit and healthy. It obviously went well…” etc.
If it was a brain tumour I’d had removed, they would be complimenting me on my restored mental acuity (if I had, in fact, regained it, or had it in the first place).
But the prostate…you can’t invite people into the loo and show them how well you’re peeing.
And there are those little question marks in people’s minds about manhood, continence and nappies. Does he have a wet patch down there? They can’t take a look, overtly. That would be like staring at a woman’s chest after she’s told you about her breast cancer operation.
Men have been the butt of cruel jokes about prostate problems for a long time, and traditionally they’ve kept discussions about it to spouses/partners, who must get thoroughly sick of the whole thing.
Friends and colleagues are wonderfully concerned and supportive, for a while, but who can blame them for moving on. Even close relatives show a reluctance to go into too much detail (why would they – they might be next?).
The prostate doesn’t exactly have the stigma of Aids or syphilis, but it isn’t something you can readily bring up at a party and hope to sustain dialogue.
It’s just too complicated. A heart transplant sounds easier…and consequently, easier to talk about.
The other problem is where to go to check on all the little hurdles and side issues that arise during recovery.
This is no indictment of the medical system, but once you’re seen to be healing (within a few days of surgery), you’re essentially on your own, unless something goes obviously wrong.
It’s one long wait, in silence. You can’t ring up the surgeon or your doctor every five minutes because you can’t remember what he/she said about such-and-such a development.
How long should there be blood in my urine? Should my boys be this swollen and this colour? And what’s incontinent as opposed to a little bit incontinent in certain circumstances? And how…you get the drift.
This is a long and probably tedious buildup to what I want to discuss next: the discussion group.
Whoa, I hear you say: why would I want to trust the advice of a bunch of fellow patients, who are probably just as unqualified as me?
Fair question. But take a look at these samples from a prostate cancer discussion group on the web and ask the question again (names changed to respect privacy).
First discussion is about PSA levels after surgery:
PHIL: Had RP in January, 2007, Gleason 7, negative margins, cancer (5% volume) contained to prostate. Had seven blood tests since the surgery, with PSA at undetectable levels. At my two year marker (March, 2009), I had a .28 PSA. It was recommended to see a radiation doctor for further treatment. I am presently in the process of gathering information to make a decision in what direction to take. I am 69 years old. I am open for any input.
ANDREW: (same day): What happened to you is the “usual”. PC more often than not, especially G-7 and up, develops microscopic mets very early, outside the Prostate. You might still have area confined disease, though. When my PSA started to “get up there”, I had a detailed biopsy before I made any moves. The results were negative…bad news…the “Horsie was out of the barn”. However, at least my urinary system was not under threat!
You had a different treatment than I did. Nevertheless, I’m not happy with the sudden rise of PSA from undetectable to .28 either. I would discuss this with my doctor. He might advise you to get one or two more PSA tests for comparison in establishing doubling time before making a move, but he probably will suggest an area biopsy somewhere down the road. If it is positive, that, in an important sense, is good news…you might qualify for salvage radiation. If the biopsy of the area is negative, you might want to use some ADT treatment for a couple of years and then come off for a while to see if you have a durable remission.
You are lucky you are 69. It is highly unlikely you will die of prostate cancer! It just looks like you will be obliged to manage your situation as you would manage any chronic condition.
ALAN: (17 days later): Check out articles by Dr Snuffy Myers and the work they are doing at the Dattoli Center in Florida on radiation therapy for high risk cancers, even after surgery.
PERCY: (same day): First thing, make sure you got an accurate PSA, same hospital or office, same lab, etc. Also, sometimes it is recommended that you have another in 3 months. Second, regardless of opinions, make sure you get a second or third, to get a good look at what several experts are saying. Some teaching hospitals have a medical staffing on second opinion case where all the oncology Docs make a recommendation. I would for sure use somebody like Dr. Snuffy Myers as recommended by Alan above. He is the best. Keep us posted and up to date on what you do so we are abreast of what’s going on. Keep you in our thoughts.
TERENCE: (a month later): I am 63 and had a RP in 2002. PSA was 7.5 with Gleason of 7. After 2 years, PSA started rising. Had radiation to prostate bed and PSA returned to undetectable. In 2009, PSA was again detectable and rose to a high of 0.85 and has now leveled off at 0.70 for the last few months. Continuing to watch PSA was having it checked about every 6 weeks, but now every three months since it is staying at 0.70.
PHIL: (same day): I decided to get another opinion from a different hospital and Doctor here in the Portland, Oregon: Oregon Health, Sciences University. They recommended I get another blood test and follow up from there. I just received the results: my PSA dropped to .10. They asked me to wait another 3 months and do another blood test. Thanks for all your concerns and prayers.
ANDREW again (same day): It looks like you dodged a bullet to me! Really, those tests can be off and your approach was absolutely correct. Remember, a small amount of healthy prostate tissue sometimes remains after surgery…that tissue obviously produces PSA. If your post-surgical PSA…as accurately measured, shows an actual decline, you have a very good chance of being in the clear! Thanks for keeping us updated!
SITE ADMINISTRATOR: (same day): Hey Phil…That’s good news. Keep the microscope focused on the numbers for a while, just in case, but there’s a great lesson here for everyone – don’t over-react to small changes in the PSA level. It happens.
Second discussion is about the immediate after-effects of surgery:
BILL: Well, the surgery went off w/o a hitch Monday afternoon. Returned home last night. Couldn’t believe my eyes when I stepped on the scale, + 10 lbs! Some minor swelling and bloating, but feeling fine. Even the cath (catheter) isn’t as bad as I thought it would be Dr says all went well and was able to save both nerves. However….my palpable “camel hump” concerned him. Will meet 10 days hopefully for cath removal and keep our fingers crossed for a promising path report. Till then…
JED: Great job Bill. Now that is behind you and the healing begins.
BRIAN: I’m sure the swelling will disappear, as mine did over a couple of weeks. One advantage was I couldn’t look down and see my scar. I’ve found I’ve actually lost about 4 kilograms in the long run (op was a month ago).
BILL: HELP!! I just noticed that my penis and scrotum are now turning black and blue. Is this normal post op? Feeling fine otherwise. Don’t recall reading or hearing about this. Thanks…
JOHN: Obviously time to make a telephone call to your urologist rather than rely on “what I did” from other men.
BOB: Go to the Dr ASAP.
BRIAN: Good advice. Mine swelled up, but there was no black and blue bruising.
JEFF: Bill…ask your Dr. After I had mine it shocked me to see my scrotum the size of a small grapefruit!! HAHA…it sounds funny now. I did notice some black and blue there also. Good idea to check it out though.
TERRY: I can relate to the grapefruit analogy. I also recall discoloration, but don’t know that I would call it black & blue. But I would suspect that it’s in the realm of normal, considering the trauma inflicted.
JEFF: You’re right, Terry…it wasn’t exactly black and blue, but it was discolored. The size shocked me, they didn’t warn me, so I called my Dr. It was from all the trauma.
Four days later:
ALBERT: So, Bill, how are you doing now? Please tell us. My surgery is scheduled [next month].
BILL: Thanks for asking, Albert. Everything seems ok…for now. Meeting w/dr [soon] for path report and (hopefully) cath removal My wife is nervous and struggles sometimes. She’s just scared and it seems to get the best of her sometimes. I just try to comfort her and tell her it is what it is. One step (report) at a time. Sure, I’ll be pleasantly surprised if the path report is promising. But the reality of this program is it’s something we will have to manage for the rest of my years. That’s just the way it is and I’ve accepted it. Will update later this week. Sounds like you have a bit of a wait until your surgery. I didn’t catch much of your info other than it appears you’re on top of things. Sounds like we may have similar situations…50-something, 2nd marriage? Any way…good luck & enjoy yourself. It really hasn’t been too bad.
The benefits of this kind of exchange are obvious: lonely patients getting into contact with those who have experienced something similar.
The dangers are obvious, as well: unqualified people passing on their inexpert advice to others. But in the first discussion, note the affirming interpretation from the site administrator, who in this case has considerable expertise available to him.
In the second discussion, see how quickly contributors urged Bill to go and see his doctor. Sometimes, that’s all that’s needed for someone to realise they’re not being neurotic.
The other plus in this kind of forum is the warmth that comes through from fellow patients. Medical practitioners can exude the same compassion, of course, but are necessarily constrained by their professional status.
Nothing quite like reading someone else’s account of something that also happened to you. The sense of affirmation (and relief) is palpable.
NEXT: End of the golden weather.
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