The internet is a blessing and a curse when you’re confronted with a serious health issue. Endless web sites have thousands of articles and opinions about causes and treatment, and the sources range from reputable research to outright quackery. You’ll find passionate arguments for and against every possible treatment. Some sites tell you to watch and wait after a diagnosis, while others walk you through a decision tree with all the standard medical options.
Sitting at home on the Friday evening of my diagnosis, I was dazed and overwhelmed. I started by googling “prostate cancer” and quickly became lost in the maze. There’s no single source of information, just a lot of web sites that all appear to be legit and important. But where do you start?
I spent that first weekend reading horror stories of hormone deprivation and surgery, incontinence, impotence, and watchful waiting. I found out quickly that it’s an old man’s disease, and men in their 50s feel that they’re in it too soon. Not many web sites consider what the man in his 40s is going through.
The real problem that weekend was that I had no concrete information from the urologist except that 2 of 10 biopsy samples contained cancer. That sounded somewhat hopeful – at least my prostate wasn’t riddled with cancer. But as I waded through Gleason scores and cancer staging, I realized I had no idea yet where I stood. And even a weekend is not enough time to begin to assimilate all the information you need to start making decisions.
So on Monday my wife and I met with the urologist. And this began our experience of choosing a medical team to work with. I read many times over the weekend how important it is to choose an oncologist you are comfortable with, and the importance of getting the best one you can find. But how do you do that?
We met with Dr. A in his office, on his lunch hour. To his credit, the man was willing to squeeze us into his schedule quickly so we could start dealing with this news. He did a fairly good job of explaining all the terms and the pathology report. Cancer in two of ten samples means it may not be widespread, just a small tumor. In the DRE, Dr. A felt some unusual texture on the left side of the prostate, but no obvious tumor/lump, so we could hope that it had not extended beyond the prostate capsule. However, the pathology rated the cells as a 4+4 on the Gleason scale, meaning that it was aggressive. We needed to act soon. In prostate cancer terms, “soon” means within a month or two as opposed to waiting 3-6 months to see if it’s progressing. “Soon” does not mean “let’s get you into surgery this week” the way it can be for other types of cancer.
Dr. A even introduced the Partin tables* to show that, if the cancer had indeed not spread past the prostate margins, my odds of success were looking very good. He explained that, even though I had a high Gleason score, my low PSA number meant it was unlikely (less than a 10 percent chance) the cancer had spread to lymph nodes or seminal vesicles. So he used the tables to try to give me hope that surgery would be highly effective. He is, after all, a surgeon. (As it turned out, one lymph node was found with cancer, and there was seminal vesicle involvement. So I was not in the lucky 90 percent.)
After his sales pitch on surgery, we agreed with him that radiation didn’t seem right as a primary treatment – if the tumor was in fact confined to the prostate, surgery would give us the chance to remove it and be done, and it’s an aggressive tumor. Radiation is less precise and more likely to give temporary results that could change later on. And with an aggressive tumor, radiation would be less likely to stop it completely. It might have been a mistake not to ask to talk to a radiation specialist, but at the time we were overwhelmed and, for whatever reason, surgery felt right to us.
Dr. A prefers to do perineal surgery for prostate cancer, which puts him in a minority. He described to us how much more quickly you heal from perineal surgery. Maybe for some men recovery time is a big deal, but it was low on my priority list. When we asked about sparing erectile nerves (at least I had read enough to know that was an issue), he said “we’ll do our best, but I can’t guarantee anything” because it was possible that the tumor had spread on the left side where the nerves are found. To do it right he’d need to take additional tissue surrounding the prostate, which would include nerves on the left side. He then diverted the discussion into the choices for ED treatments, including pills, suppositories, injections, and implants (which unfortunately were prominently displayed on posters in his office; seeing those posters did not help me feel any more hopeful).
In retrospect, I was uncomfortable with his vague answer about nerve sparing. And later I felt justified when I learned that nerve sparing is very difficult to do effectively with the perineal approach. The surgeon just can’t see the nerves and get to them, not nearly as effectively as with the retropubic approach. And it’s difficult to remove the seminal vesicles from the perineal approach, so if the cancer has spread to them you’re in trouble. But Dr. A didn’t tell us that, he just said “I can’t guarantee anything.” Not only that, but I don’t remember any discussion of incontinence other than an assumption that I would have a temporary problem with leaking urine.
Still, we felt very comfortable with Dr. A and left our hour-long meeting feeling that, if he were to be my surgeon, we could do a lot worse. But also in retrospect, I realize that another point was a red flag for me: I asked him how often he performed prostate cancer surgery, and he said he did an average of one or two a week. He had been doing this for 15 years, he knew what he was doing. As I read more and evaluated other options I realized that this is a part-time job for him. He is the one, after all, who did my vasectomy. He has a regular practice where he’s dealing with all kinds of urological issues, and cancer is only one of many areas he works in.
As we came to a decision, and as more information came in, I realized that my surgery would not be a simple one. A large majority of men with prostate cancer can have the prostate removed and never look back. But as it turned out, my cancer was not confined to the prostate, so I would not get away with only surgery and follow-up ED treatment.
After our meeting with Dr. A, my wife started asking around in her network of friends. And one name kept coming up, the lead urological oncologist at the largest cancer center in the state. A family friend had worked with him and told us he was the best, no question about it. Two or three other people mentioned his name as the one that always gets the highest recommendations. My wife got a phone number and called his medical assistant in charge of scheduling. The lead oncologist was out of town for a couple of weeks, but his associate, Dr. B, was available and could work us in next Monday. So my wife had to politely ask if we might not want to wait for the main guy, since we’d heard he’s the best. His assistant diplomatically explained that his associate has slightly better numbers in his results. But we’d be in good hands with either of them. So we decided to meet sooner with Dr. B instead of waiting.
In the end we chose to work with Dr. B, who does nothing but urological oncology and performs 5-10 surgeries a week. His personality and style of working was an excellent fit for us. And he was willing to give us all the information we could handle and let us make treatment decisions. (I have since met the lead oncologist at that center, and while he's an excellent surgeon, I think his personality might not have worked as well for us.) As grateful as I was to Dr. A for diagnosing the cancer and giving me one surgical option to consider, I decided he wasn’t going to be my oncologist. It wasn’t his top priority, and although he had experience, we didn’t feel that it was the best we could do. The important lesson here for us was: get a specialist, get the best one you can find, and don’t look back.
*Partin tables: these extensively researched tables document the odds of having your prostate cancer stay confined to the prostate or extend beyond it, and the odds of it spreading to the seminal vesicles and pelvic lymph nodes. These odds are based on initial diagnosis: PSA numbers, Gleason scores, and DRE results. The tables are widely used, and are 95% accurate, but you should never take them too seriously. As my diagnosis and treatment progressed, I kept finding my odds getting worse, and ultimately my pathology was much worse than Dr. A predicted using the Partin tables. I started as a T2a, Gleason 8, PSA 3.7. I had hoped to be in the lucky 36% of men with these numbers who had organ-confined disease, but I was not. I wasn’t even in the 90% that had no lymph node involvement. My oncologist Dr. B essentially told me to forget about the tables, only because it’s difficult to pin your hopes on numbers from other patients, no matter how many thousands of cases were used in the samples. Every patient has a unique case.
There are plenty of opinions on the usefulness of the Partin tables. Try the Phoenix5 site for a pathologist's perspective, or the Prostate Cancer Research Institute for a general description.