If you read the post before this you might have had the impression that I was leaning more towards low dose rate brachytherapy rather than radical prostatectomy as my preferred treatment for my prostate cancer.
That is what I decided. During the month after the positive diagnosis of early stage prostate cancer I thought the most useful activity for me, as my situation wasn't time-critical requiring immediate medical intervention to deal with the cancer, would be to learn as much as possible about the disease and the treatment options and results. So I spoke with 22 men and 1 wife, and my wife and I met with 4 urologists for their opinions. I put-out the word that I was keen to speak with other men who had dealt with PCa. Friends and family passed-on contact details to me, and my research started. It is such a common cancer that nearly anyone over the age of 40 will know someone who has had it. My grandfather had it, and one of my uncles had it. Mention prostate cancer to a random group of men and you'll be surprised by the number of men who have or have had it. 'Most men die with prostate cancer, not of it.'
In addition to speaking with friends of friends and the urologists I called the Cancer Helpline and asked for a referral to men who had selected brachytherapy for their treatment - got a call-back that night from a very generous older man who shared all the details of his situation. My wife and I also attended the monthly meeting of the local Prostate Cancer support group that is promoted through the Prostate Cancer Foundation of Australia website
. We reduced the average age of attendees at the support group meeting and despite the best intentions and efforts of the convenor there was a sense of desperation in the small group with their lot. Someone pointed me to the Seattle Prostate Institute website which was very useful for information about brachytherapy - apparently that's where most of the specialists go for training in the procedure. Google Scholar was also a good friend in finding medical journal articles about quality of life post-treatment.
I might have mentioned it before but I was stunned by the generosity of the men, and the wife, who I spoke with as they shared the most intimate details of the illness, the treatment decision, and complications from the treatment. One man told me details that he'd never even told his best mate. It was the kindness of strangers. If I can help other men with their decision based on my own situation I would be very pleased to do so. What they choose is their decision as what I chose is mine, everyone has to make-up their own mind and choose what is best for them. Surprisingly, I would have thought that there would be treatment zealots in the group I spoke with telling me that I had to go down one path or another but this wasn't the case. Except for well-intentioned friends who strongly believe in alternative therapies - they were quite convinced that I would be best doing what they recommended. But that isn't my belief and we'll never know if our friend who died of breast cancer complications would still be here today if she hadn't pursued a largely 'natural' treatment plan following her surgery.
It's all so personal.
My anecdotal research confirmed to me that if I went down the surgical path that there would be unpleasant complications no matter how good my surgeon was. I would either suffer urinary incontinence and/or erectile disfunction. And that would last for a short period at the best, or never resolve at the worst. What I was repeatedly told by men and the urologists was that I would need to wear a pad for the incontinence for at least a couple of months, and it would take generally two years after surgery before I could expect erections again. Even men who told me that they were 'pretty good now' following their surgery a few years ago admitted that they would 'slip-in a pad' if they were going-out for a heavy night drinking, and that they suffered occasional leakage when squatting or lifting heavy things like grandchildren. I guess humans are naturally optimistic and we put-on the best face with whatever situation we have to deal with, but that 'pretty good' description didn't equate to 'back to normal' to me.
My wife and I learned that knowing what specifically to ask the doctors is very important as they will answer your questions but generally don't volunteer much information beyond the specific answer.
For example, what does 'getting erections back post-surgery' mean? Are they the same as pre-surgery? 'No' was the answer - information generally not volunteered by the doctors but said when the specific question was asked. And, 'probably not as strong and oh, by the way, you may notice some loss of length of the penis following surgery'. Oh, what does that actually mean we wondered? One man I spoke with who had much more aggressive cancer than mine, possibly complicated unnecessarily as he neglected to get a biopsy for 4 years after his GP had found an abnormality, had surgery and told me that he'd lost 3 inches in length. I'm just telling you what he said. He is also on hormone therapy and hating it as it caused everything to shrink that men don't normally want diminished, plus he suffers the hot flushes and other side effects resulting from the drugs counteracting normal testosterone production. I learned that if you are on hormone therapy because the cancer has spread beyond the prostate then you are probably in the waiting game; currently there aren't happy endings once you get to this stage. But that may change.
Another question that I now know to ask, if I was to go through this whole thing again, is whether the biopsy is done under anaesthetic. Mine was done under 'twilight sedation' and it was not a problem at all, but two men who I spoke with said their biopsies were done under local anaesthetic only and they both described the process as tremendously uncomfortable. 'Like having a nail-gun go off in your backside' said one, 'It was the most painful thing I've ever experienced; I felt like I had PTSD after my biopsy and would break-out in a sweat and trembles whenever I faced another medical procedure,' said the other. Surely there are other men who've had biopsies done under a local and who haven't had problems with it but that wasn't my anecdotal information. If I was researching again I'd ask the men about their biopsy procedure.
We met 4 urologists. The first I would not hesitate to recommend for general urology issues or if you decided that the most appropriate treatment option for your prostate cancer was 'open' radical prostatectomy surgery (not the robotic version) - he is the most approachable, warm, thorough medical specialist I've ever met. When he confirmed the positive cancer diagnosis following the biopsy my wife and I both thought that we would use him for my treatment, using open surgery, because of that total level of trust and comfort with him. But he provided us with the names of 3 other urologists who specialise in different treatments of the same disease and said that he would be happy to write referrals to any and all of them for us to speak with before deciding on the treatment. He recommended that I speak with as many people as possible before deciding. This was excellent advice. I sincerely thank my GP for the referral to this wonderful specialist.
The second urologist specialises in brachytherapy for treatment of early stage cancers like mine. He came across as very smooth and almost seemed puzzled about why we would consider any other treatment option than brachytherapy for me. 'Why wouldn't you do it if you could,' was his comment. At the time we thought this comment was made more in self-interest at his expectation of doing the procedure but in time realised that was completely unfair and came to agree with his comment.
At the second appointment the urologist also did a DRE exam and said that he would almost pass my prostate as being normal. He then did an ultrasound measurement of my prostate, as brachytherapy isn't suitable if the prostate is too large or too small, and determined that mine was about 20cc in size which is pretty small. My initial urologist estimated that my prostate was about 22cc in size. There's a range of sizes that the urologists can work with: if they are less than something like 15cc then they are too small for successful brachytherapy. If they are too large then the urologist might prescribe a short course of hormone therapy to shrink the prostate enough to be able to use brachytherapy. We later learned that if they are too large then the pubic bone obstructs access to the prostate when placing the radioactive seeds and incomplete coverage might occur.
The third urologist meeting wasn't an actual appointment. He was the featured speaker at a public 'mens' health' seminar one evening, but he was also another doctor on the list of specialists who does brachytherapy. My wife and I went to the meeting, which was sponsored by the medical supplier that makes and sells urinary and genital prosthetics like artificial urinary sphincters and penile implants. These are end-game solutions for men suffering badly from urinary incontinence and/or erectile disfunction which may or may not have been caused by treatment of prostate cancer. There are many other reasons why men develop these unfortunate situations. But most men in the audience were there because of the results of treating their prostate cancer. It was a relief to know that there were solutions for improving quality of life issues if all else failed. They aren't inexpensive and we sensed that many of the men wouldn't have the means to pay for them. The cost of artificial urinary sphincters is covered (at least in part) by Medicare, but penile implants are not. The government obviously feels that it is critical to be able to control your urine, but that getting erections is a luxury.
The third urologist was engaging but we both turned-off when he effectively said that why not have the surgery - he does both radical prostatectomy surgery and brachytherapy - as if it all went bad there were always the mechanical solutions (which he was promoting) at the seminar. I really didn't like this and felt that if I was entrusting myself to a surgeon I'd want them to give me the best possible outcome from the surgery, not have an attitude that if it doesn't quite work then there are always mechanical solutions to resolve the situation. Requiring more major surgical procedures and going further down a one-wayroad. No thank you.
Our final urologist appointment was with a man well-respected as an expert in robotic assisted radical prostatectomy surgery (RARP). He teaches other urologists how to do the procedure. A good friend of ours was his patient and spoke very highly of him, and other men I spoke with during my research had been his patients as well, and also thought very highly of him. He explained the procedure to us and what he said confirmed what I'd been told and read. If this was the treatment that I selected then this was definitely the specialist I'd have do it. But again it is surgical removal of the prostate and despite the shorter time in hospital, the smaller amount of blood loss during surgery, it's still surgery and you are left with the results of prostate surgery.
He was the only urologist of the 4 we met who said that I could possibly not have active treatment but wait for 6 months then have another biopsy to see if the cancer had spread or had become more aggressive. It all depended on how high my risk profile was whether I would consider this. With 4 biopsy cores positive for cancer, and 2 of them more than 60% positive, I thought this was too risky - what if there was a Gleason score 4 or 5 cancer in there that the biopsy hadn't found.
That fourth appointment was on a Friday afternoon. On Monday I called and made the appointments to go with the low dose rate brachytherapy treatment.
Labels: brachytherapy, DRE, ED, Gleason score, prostate cancer, PSA