Hopefully you had the chance to read my previous articles about how I handle the news of hearing I have prostate cancer. If you haven’t here is a link to them on my website. https://georgeasantino.com/book/blog/
This is the fourth article in a series of articles I am writing about how I deal with this challenge.
The last doctor I was scheduled to see was a urologic oncologist at the University of Washington Department of Urology. If I were going to have surgery for my prostate cancer this was the guy who would do it. I’d heard he was one of the best in the world and my assumption, because he was a surgeon, was that he would tell me why I needed surgery right away, just as the radiation oncologist had told me that if I chose to have radiation I shouldn’t wait more than a couple of months to start.
At this point I was leaning towards having surgery. I wasn’t a big fan of doing nine weeks of radiation and still not knowing for sure if the cancer was gone. I also didn’t like the long-term side effects that radiation might cause with my bladder and colon. I was sure that the surgeon I was talking to would most likely agree that surgery was the best option.
This appointment started like the others. First, they weigh you. Then they take your blood pressure and ask you a bunch of questions about your general health. This time was a little different, however, as they asked a lot more questions about my sex life and the quality of my erections. It seems if things are working fine down there now the likelihood of them eventually working fine again is increased. I also think they want to gauge how concerned you’re going to be about that impotence side effect.
After I answered his questions the doctor proceeded to tell me about the surgery and its side effects. The radiation oncologist had already told me and the surgeon confirmed that the chances of impotence and incontinence were 100% following surgery. He also said that most men recover from these issues in a few months, though in some men it could take a couple of years. He explained that while the problem of incontinence would greatly diminish over time, many men will have to wear a pad for the rest of their lives.
I wasn’t a big fan of either of these side effects, so I asked the doctor why most men wouldn’t choose radiation when neither impotence nor incontinence would be a resulting problem. He agreed that this was true at first but that over time these problems could come along with the ones I mentioned earlier with the bladder and colon. He said that, obviously, the younger you are when you have the radiation the more likely these issues will have an impact on your life.
I then said well I guess I have to choose between two very unpleasant treatments. Do I want to deal with impotence and incontinence for several months, if not years, or do I want to avoid them for the short term only to have bigger issues down the road? I spoke these questions out loud and continued by saying too bad active surveillance is off the table.
I was very surprised when the doctor responded, “Why is it off the table?” I replied because both the urologist and the radiation oncologist said I couldn’t wait. That even though the radiation oncologist had said she hadn’t felt a tumor when she did her digital exam, the urologist had said she had felt a tumor and therefore waiting wasn’t an option. The surgeon told me he didn’t feel a tumor either and then he started drawing on the white paper on the exam table. (I’d always thought that paper was on the table for sanitary reasons but so far, every doctor I’ve seen has used it as a visual aid.)
The surgeon reminded me that my Gleason score was only a six, which meant a low risk of the cancer spreading. He said that my PSA was less than ten (It actually was 4.8) and that was low for someone with cancer. He then reminded me that while twelve cores were taken from my prostate, only two showed cancer and in both cases it was less than 5% of the core. So, Gleason score 6, PSA 4.8, cancer in less than 3 cores, cancer less than 5% in those cores and, as far as he was concerned, no palpable tumor all meant there was a low risk of the cancer spreading and active surveillance was an option.
I felt as if a large weight had been lifted from my shoulders. I thought by the end of this visit we would be picking a date for surgery. Instead we were talking about coming back in six months for another PSA test. It felt too good to be true, so I had to ask the tough question which was what are the chances that we do this retest in six months and we find that the cancer has spread? That would suck. The doctor told me about a study he was doing called PASS or the Prostate Active Surveillance Study where he follows low risk prostate cancer patients. He said there were currently 1,600 men in this study. The main two things you must do are have a PSA test every six months and a follow-up biopsy every year. He said that of the men in this study there were a couple that had a Gleason score of 7 on the follow-up biopsy but he didn’t think their cancer got worse over that time. Instead he said it most likely was already a 7. It’s just that the previous biopsy didn’t sample cores with the most cancer. He pointed out that even when 12 cores are taken you’re still only sampling about a 1000th of the prostate. The surgeon didn’t seem concerned about us missing our window but he did mention that about 50% of the men who choose active surveillance end up having the surgery within five years. This wasn’t because the cancer had spread but rather because they got tired of worrying about the cancer spreading and all the follow-up testing. It’s not like the cancer is going to go away over time. You still have cancer, he said.
So, here we were. What had started as three options for treatment had become two and now was back to three. I’m only 61 but I have a very bad back. My wife and I had been doing some traveling and I knew at some point that would stop as my back could no longer handle it. I wasn’t looking forward to having this surgery and losing some valuable traveling time and now I didn’t have to.
After some thought I called the doctor back to sign up for his study. Only time will tell if I made the right choice or not. When I know, I’ll tell you all about it.
My advice:
- Don’t assume because one doctor tells you something is off the table that it really is off the table. Get a second opinion.
- Understand your treatment options and ask each doctor you see about all of them.
- Once you decide on a treatment don’t second-guess yourself. You’ll drive yourself crazy.
- Live your life. I have no idea where this is going to go, but in the meantime, I’m going to enjoy the time I have. You should do the same.
George A. Santino helps people who want to break down barriers, including self-imposed barriers, to success. Check out his Amazon bestselling book, Get Back Up: From the Streets to Microsoft Suites.