Hi there all, and especially GFC. Great post GFC, and thank you for launching it, as it is a really important subject, even though not boating related per se. I realise I'm coming in a bit later than I'd have liked, as it started back on the 1st, but I only just came across it. However, the speed with which it grew legs says a lot about the relevance of it, for sure.
Being not only a newly retired family doc, but also someone who in 2017 diagnosed himself with Ca prostate, while at the same time having quite a large number of men in whom I also diagnosed the condition over the last few years, and observing how they all went with their various modes of treatment, I thought I might be able to add to this discussion from the medical and personal standpoint, and with a certain degree of validity.
You say...
Of all the threads I’ve started on here this is by far the most difficult I’ve written. The reason? I have prostate cancer. Well, actually I have Metastasized Prostate Cancer.
About 2 months ago a long time friend of mine that I’ve met for coffee every Thursday for the past 25 or so years told me he had prostate cancer and was going to have his prostate removed. I’m 73 and he’s several years younger than I am. He asked me when the last time I had my PSA checked and I couldn’t honestly tell him.
A quick call to my local VA medical center disclosed that I had my last PSA test done when I was 70. I asked them why they didn’t do it every year when I had my physical done and they hid behind the recommendation of the CDC that says something about not doing them for men over 70. I asked them why and they said they didn’t know, that’s just what the CDC recommends.
Quite frankly, I feel like they let me down. I assumed (Yeah, I know…) they did that every year as part of my blood work. Had they told me they didn’t routinely screen for PSA after a certain age I’d have requested the test be done.
So, I had blood drawn and had a PSA test done and the results were sky high. High enough that they rushed through an approval for the VA to pick up the tab for me to see a urologist. I did, they did another PSA test and confirmed the reading and scheduled me for a CT Scan and MRI so they could determine the extent of the spread of the cancer cells.
So now that we know the cancer cells have spread throughout my body, attaching itself to bones at several locations in this otherwise perfect male specimen, they scheduled me to see an Oncologist.
So here I sit, writing this thread which took several beers before I could bring myself to do it. I’m facing 6 months of chemo treatments, one every 3 weeks. Nobody is predicting this is going to end my life early, in fact the only thing they are predicting at this point is that at the end of the 6 months they’ll reassess how things are going and likely put me on another type of treatment......
I didn’t write this thread looking for sympathy. That’s now how I roll. I wrote it with the hopes that some of you old farts out there who don’t know when you last had it tested will get your butt in gear and go see your doctor. Smooth waters, light winds and fair skies.
And therein lies the conundrum...
While the statistics might suggest that often a Ca prostate will not affect a man over say 70 all that much, and he may die with it, but not from it, each and every one of us do not think of ourselves as just a statistic..!
David makes a great point here when he says...
....But lots and lots of prostates were removed over the years, maybe including mine that would have been fine if left alone. That is why the CDC recommends and I am sure did not do it casually, not to do routine PSA exams anymore. It is a crap shoot for sure: If PSA is high, do the surgery and face quality of life reduction or do nothing and bet that you will be fine. The CDC apparently determined that on balance not doing routine PSAs was better than doing unnecessary treatment. The rub is that you never know if you will be the one like yourself who would have been helped by early detection and treatment.
And FWIW even if detected at the age of 70 which apparently was not for you, CDC recommends no treatment, because you will die from something else than prostate cancer. (But we don't think of ourselves as a statistic like this, do we? - my edit)
I am a little puzzled by the recommendation to start chemotherapy. Usually the treatment for someone in your condition is hormone therapy- reduce testosterone in your system because testosterone is necessary for cancerous cell growth.*** It works for a lot of people, but unfortunately not for all.
***The use of chemo straight up was because there were metastases, so testosterone deprivation therapy alone, in itself not enough in this case.
The other thing that began to concern me was that
there is still an over-reliance on the surgical option, of radical prostatectomy, and often it became apparent to me that
unless one knew (like I did) about the other options, like radiotherapy, and now even focussed ultrasound, folk were not being told about these options. It hinted at being a bit like the workman whose only tool is a hammer, would like every problem to look like a nail. So Syjos comment below is so right...
Wow, sorry about your prostate issue.
I get a PSA test yearly since my dad had prostate cancer.
10 years ago my PSA went up quickly. Went to an Urologist who performed a 12 sample biopsy that didn't find anything. I got an infection from the biopsy that took months to heal. The Urologist was sure my prostate was cancerous and wanted to do another 12 snip biopsy after I healed. I told my Doctor no way would I go back to the quack. He sent me to another Urologist who used a pee pee camera to look at the prostate. He found a golf ball sized tumor on the outside of my prostate. The Urologist removed the tumor through my urethra, had it tested and found it not cancerous. My PSA dropped to normal within 6 months.
Moral of the story, GET A SECOND OPINION! (I would add, especially including a radiation oncologist)
Thanks Tom. The whole notion behind this thread was to get guys to call their doc for a PSA test. I'm really pissed at my VA Physicians Assistant for not telling me they didn't routinely do a PSA test. Had she told me, I'd have requested that it be done. By not telling me, like WifeyB said, she was playing God and I don't like that.
Yes, I can understand how you feel, but
about that time the US College of Urologists came out very strongly about not doing the test unless specifically asked, or symptoms suggested trouble. As did other colleges round the world. Problem is most patients aren't that pushy, and in many cases, (my own included) there are no real symptoms.
Already since the surge of cases of metastatic ca prostate being diagnosed, these recommendations are changing back to more active surveillance..!
Many tests are indicators. That's why we do labs. Even things like echocardiograms are very limited diagnostic tools, but tell doctors places they should perhaps look.
It should proceed like this:
Dr. Mr. Patient, you are 70 years old and PSA's are no longer recommended for those your age. First, they may give inaccurate impressions. Second, it's felt at your age, the favored course of action, even if positive, is to do nothing. Would you like a PSA test done?
Patient: Yes, I prefer to have any possible information.
Then later.
Dr. Your PSA is elevated. There are now several courses of action. We can do a biopsy. We can do nothing. Or, if you're more concerned about other parts of your body, we can do some scans to see if we find signs of cancer.
Then pursues a discussion of each option and patient decides. Patient, not CDC, not Doctor, not Insurer, Patient.
Absolutely right. That is how it should go, but
more importantly, nowadays, as one urologist has stated, "to do a prostate biopsy without first doing an MRI, is tantamount to malpractice". Actually, he used even stronger language. He said barbaric. And, like the poster Syjos mentioned above, I have had a friend actually die from septicaemia caused by trans-rectal biopsy, so I insisted on it being done (under GA) trans-perineal, (ie from clean skin between the scrotum and anus), and only after MRI showed where to aim..!
So, in summation I would just say as diplomatically as is appropriate, bugger those who say, you don't really want a PSA do you..? Or, if diagnosed, like I was told, "if you do nothing Pete it probably won't kill you till you're 80ish". I was only 69, and did not want to live what could be another 20 years with a ticking time-bomb down there,
and I'm not a statistic, I'm me..!
So, I had just stereotactic (highly focussed) radiotherapy, declined the androgen deprivation therapy, as PET CT showed no spread, and I needed to keep working as a GP, and I never missed a day's surgery through the 25 weeks of treatment sessions, most of which were able to be done in the evening. My PSA went from 20 down to now, 3 years later, barely measurable at 0.04.
I explain this so others can know there are options other than surgery, and the sooner it is found, the more options are open, and the more effective the treatment will be.
So, like GFC said, "ask for those PSAs and don't take no for an answer, as long as you're prepared to deal with the result of course - interestingly, some are not...
I'll finish by re-quoting from GFCs last post...as this is the sort of thing we need to hold onto when times are tough, for whatever reason...
The neighbourhood gathering around the fire pit a couple of nights ago was fun. We plan (sic)...A Thanksgiving dinner for about 20 or so of our closest friends. One couple is buying the turkey, we're doing the stuffing, others are bringing cranberry dishes, salads, potatoes, etc. It's going to be a very informal, outdoor event and should be a good time to reflect on our good fortune.
More to follow.
