I find out my primary care physician decided to add the PSA test to my last blood workup. I probably would have passed on it, but there it is. My first PSA test is quite high at 9.0. My primary care physician isn’t particularly worried. I’m only 54, so he’s pretty sure it’s a urinary tract infection. I go on a course of antibiotics with a plan to retest in a month.
I finished the antibiotics before my blood draw, so any urinary infections should be cleared up for this PSA measurement. Unfortunately, my retested PSA comes back at 8.1. My primary care physician is now concerned and refers me to an urologist.
I’ve heard the PSA test is notoriously unreliable and start doing serious research on the test this evening. I have a background in statistics, so all the statistical charts and data are second nature. I am not prepared, though, for how hard it is to get information on research done in the US. I find tons of papers out there, but virtually all of them require me to pay $25-$50 per paper to get them. And all they’ll let me see is the abstract, which often is not enough information to make an informed purchasing decision. Forget that.
Make no mistake, the vast majority of these studies were paid for by US taxpayers, but I guess the journal publishers cut a sweet deal with Congress and probably the National Institutes of Health. The publishers are allowed to force taxpayers to pay to get the results of the studies they paid for! And don’t be thinking you can call the doctors (if you can somehow find their phone numbers) to get the studies. In my experience they just refer you back to the “for pay” journal website…
I finally find data from Canada and the UK. In these countries it appears that if taxpayers pay for the study, the results are freely available on the Internet. What a concept!
From my research it seems pretty clear the next step is a biopsy. Even if the biopsy comes back negative, it appears one is starting down a path with continuous retesting and possibly more biopsies. Prostate cancer would be forever right in front of me, and it’s questionable anything would be gained by this. If it comes back positive, it’s quite likely the cancer would never kill me, and I might be signing up for procedures with very significant side effects as a “just in case.” I tentatively decide to forego any more PSA testing or procedures, but will still see the urologist and hear him out.
(Edit: the PSA test controversy continues. Here’s an excerpt from an excellent article posted on MSNBC.com on March 14, 2012.
“Prostate cancer comes in at least two forms. One is the killer; the other is a slow-growing type of cell most men get if they live long enough. Studies of men who died of other causes found that 30 percent of those 50 and older and 70 percent of those over 80 have prostate cancer and never know it. Medical science cannot distinguish between the killer form and the far more common one that can be left alone.
That is where the PSA test comes in. It is not a test for cancer, but for normal prostate tissue, which can be enlarged for several reasons. If the PSA is elevated, the doctor will order a needle biopsy. Because prostate cancer is so ubiquitous, the biopsy will often find some.
Then the patient and his doctor face a dilemma. Whether the treatment is surgery, radiation, hormones or a combination, it often comes with serious side effects including impotence, incontinence and bowel problems. Often men who need no treatment follow this path and end up with the side effects. Millions of American men have. It is difficult to find men who will admit suffering embarrassing side effects that may not even be necessary. In fact, most often they will call themselves lucky to be “a cancer survivor” — even if it is from a cancer that may never have hurt them.
The latest European study found that to prevent one prostate cancer death, 1,055 men had to be screened and 37 men were diagnosed. That means that 36 men were eligible for treatment that may not have been necessary and may have left the men with distressing side effects.”
To test or not? It’s not an easy question to answer.)
I see the urologist and he orders a different urinary tract infection test. It returns negative while I’m in the office and he recommends I get a biopsy. I agree to think about it, but I’m strongly leaning towards no biopsy and just going back to living my life. I mention we’d just made final payments for a trip to Africa starting in the next few weeks and what should we do. The timing seems so perverse. He recommends we stick to our plans and go.
I met again with the urologist and he says, in a nice way, that I’m crazy to not get a biopsy with such a high PSA. I contact my primary care physician and he echoes the urologist’s opinion. I finally relent and we schedule the biopsy. I commit to myself that if it comes back negative, I’ll be done with this once and for all. If it’s positive and not really bad, I’ll be done with it as well.
Got the biopsy, it was really no big deal, just not very dignified. The worst part was the local numbing shots and they weren’t that bad.
My wife and I met with the urologist today. We find out I have a Gleason score 8 (meaning aggressive cancer), both sides of prostate are loaded with the cancer, and it’s unclear if the capsule has been penetrated (meaning the cancer may be in my bloodstream now). There’s no question I have the kind of cancer that kills people well before their time.
The urologist made sure we were the last appointment of the day and he spent a great deal of time with us. Words cannot express how compassionate and excellent this guy was. He answered all our questions, answered questions he thought we should ask, and consoled us. I’m so glad my wife was there. I probably missed most of the first half hours of our discussions. I was in such shock and disbelief. I also had to spend a lot of effort holding the panic at bay and trying to keep my fears from overwhelming me. At one point I realized my chest was so tight I couldn’t breathe and was about to pass out. At the end he recommends I read Dr. Patrick Walsh’s book “Guide to Surviving Prostate Cancer” and then meet again to discuss the way forward. As we’re leaving,
I read Walsh’s book and it’s fantastic. My only criticism is the book needs to cover all procedures in as much detail as radical prostatectomies. Even so, it’s a must read. For my specific case the book recommends seed implants with radiation or radiation alone. Of course this needs to be taken with a grain of salt. Walsh didn’t actually see me. This is just my read from his book.
My wife and I meet with my urologist for a follow-up discussion of the biopsy results. It was a surprising visit. My wife and I came prepared with a list of questions – largely drawn from Walsh’s book. The book extensively covers radical prostatectomies and has a very detailed list of questions to ask candidate surgeons. (The list also includes questions for other therapies, just not as many or as detailed.)
My urologist’s recommendation is a radical prostatectomy. His reasoning is that if it hasn’t escaped into the bloodstream, a radical prostatectomy is the surest way to “get it all.” My big concern is all the potential side effects, some which have significant impacts on quality of life. There’s no way to know which side effects one is stuck with until after the procedure.
We pull out the list of radical prostatectomy questions from Walsh’s book and fire away. My urologist doesn’t do very well on two of the questions, important ones in my opinion. Despite the fact that I think he’s a really fantastic person and probably very proficient, this forces me to rule him out for the radical prostatectomy route. He doesn’t do the other procedures.
I ask if he could arrange for a second readout of the biopsy from the folks at the M. D. Anderson Cancer Center in Houston, which he says will be no problem. I also ask for a referral for a second opinion from an urologist at M. D. Anderson. I’m taken aback when he says patients of his haven’t been universally happy with the referrals they got there, so he no longer provides them.
My wife and I meet with another Dallas urologist to get second opinion. He’s a very nice guy. Unlike the first radiologist he does pretty much all of the procedures. He recommends either seed implants or cryo ablation (freezing the prostate). He does not recommend radical prostatectomy, because of my high Gleason score, the involvement of so much of my prostate, and the risky side effects.
Walsh’s book isn’t nearly as detailed on radiation or cryo ablation, so our list of questions isn’t as complete as for a radical prostatectomy. Regardless, this urologist passed with flying colors for the questions we do have. He’s definitely a candidate, if I go for either of these treatments.
I ask him for a referral to an urologist at M. D. Anderson, which he gives me. He says he doesn’t know him very well, but he’s the only referral he can provide.
We had pretty much decided to go ahead with the second urologist, and wanted to call and confirm.
We finally found out he had a serious family emergency and it was unclear when he’d be able to return to the office. So we set up the appointment in October to meet with the third urologist, the one he recommended.
My wife and I met with a pompous, self-centered prick, who called himself an urologist at M. D. Anderson. The meeting was an unqualified, slow motion train wreck. The whole experience was so disheartening that after we left my wife and I discussed not doing anything and just letting nature take its course. The only thing of value I found out is their second readout of my biopsy indicates the cancer has probably penetrated the capsule.
Later that night, we realized getting no treatment is crazy and I decided to call the management at M. D. Anderson the next day. (Edit: there will be no future entries describing these interactions. Suffice it to say, all I got was a bunch of legalese push back. I was trying to help his manager understand they had a loose cannon. Her only concern seemed to be avoiding saying anything that could be used in a lawsuit. I didn’t mention I had already been told by an M. D. Anderson staffer that I wasn’t the first to complain about this guy. I’ll never go to M. D. Anderson for anything, or recommend them to anyone. I’m sure they have good people there, but my experience was so bad I can’t recommend them in good conscience.)
Back to my sister-in-law, who’s a cancer drug rep., for any other suggestions. I tell her to open the search area to include Jacksonville, Florida, since my wife’s family is there.
She calls back with great news. There’s a cancer center there that does an exceptionally high volume of prostate cancer seed implants and has an exceptional 10 year cancer free rate. My wife and I book our flight to Jacksonville.
We meet with an urologist and radiologist. They are super nice and bleed confidence. They’re putting the final touches on a large seed implant study that clearly shows just how effective the procedure can be.
They explain that this will be a four step procedure. First I would go on Lupron to shrink the prostate, making it easier to place the seeds, second would be the actual seed implantation, third a round of conformal beam radiation to get the “edges” of the prostate, and fourth a follow-up regimen of Lupron to keep the cancer’s food, testosterone, low.
We sign up and I get the first Lupron shot, good for four months. They warn me of the possible side effects of Lupron, reduced libido, depression, irritability, hot flashes and cold sweats.
During the month of October they aren’t too bad.
I go in for the seed implants. It’s done under general anesthesia. The whole process was pretty close to totally painless. The worst part was setting the IV. No kidding. There was some slight tenderness between my legs (that’s where they go in), but no incisions, no scars. I was able to walk out pretty much the same as I walked in. I’m scheduled to start the conformal mapping radiation in early Jan.
The Lupron’s effects are more pronounced, but still not bad.