After agonizing research since my diagnosis in June and trips to see doctors literally across the country from Boston's MGH to Loma Linda's Proton Therapy Center near Palm Springs, I chose
open surgery here in Chicago. In case this may help others, I want to share how I arrived at my decision. The decision is truly personal and must be made based on one's own priorities and tolerance for risk and/or the unknown.
Each of us goes into our treatment with unknowns...is the cancer still organ confined? What is my real Gleason score? What are my risks of recurrence? Would radiation kill all the cancer cells or will some be resistant to radiation, survive, and continue on? Even if my bone scans and CT scans are negative, what is the risk that some undetectable microscopic cancer cells have escaped into the prostate bed or have already traveled to and lie dormant -- or worse aren't dormant -- in some distant part of my body where they may continue on? What new tests are available that can help with clinical staging of PCa that maybe I should do? And so on and so on.
At the end of the day, there are not answers to all these questions, nor are there guarantees for treatment success. Each of us must find the inner strength to incorporate these unknowns along with what we know into our psyche and move forward with our decision for treatment and our daily lives. It does, however, change each of us forever and makes us more sensitive to our own mortality and the value of life. It has also made me appreciate more the people around me who have supported me emotionally, including the people's posts I have read here and those from Healing Well to whom I have spoken.
I truly wanted to make a completely rationale decision based on fact and data, not one based on emotions. I didn't care about
just cutting it out of my body with surgery if radiation was proven to be just as effective. I wasn't going to be afraid of radiation if the success spoke for itself and the risks of secondary cancers were truly nominal. I did care about
minimizing side effects and maximizing my quality of life after treatment. I wasn't going to avoid surgery despite the risks of side effects if it offered me the best chance at long term survival, because I wanted to make a decision that gave me the best chance at being around with my wife to see our 9 year old twins grow up and enjoy my time with them.
So I read and read and read...articles, studies, books, and medical journals. I interviewed surgical and radiation patients, had many physician consults, and spoke to any medical professional I knew. I discovered after awhile I knew more than many doctors about
PCa, as I'm sure many of us here do. I also
opened the eyes of a few who from me better understood the dilemma of the decision each of us with PCa faces in choosing a treatment option.
I discovered that for higher Gleason scores and PSAs, the risk of surgical failure is reasonably high (greater than 30% to me is high!) and the outcomes for radiation therapy and surgery are similar. The way I saw it was this...as your Gleason Score and/or PSA goes up, so does the surgical failure rate and the risk of surgical complications and negative side effects (i.e., incontinence and impotence). Radiation started looking more attractive in particular because of the more favorable side effect profile. I actually laughed at a physician who said to me that the ED side effect of radiation over 6-7 years was the same as surgery. I asked him if he saw no difference between waking up the next day with ED and having it happen gradually over years? He of course did not answer my question.
Proton Therapy to me seemed the most attractive radiation and treatment option because it had the most favorable side effect profile and also provided the ability to receive higher radiation doses than traditional radiation modalities with minimal increase in side effects. I was leaning toward Proton Therapy for sure.
My fears of incontinence and ED were my biggest objection to surgery. I felt compelled to continue to evaluate Proton Therapy. It certainly sounded so much better and the patients truly are INCREDIBLE advocates and boast minimal side effects overall...and I believe them, I really do. I spoke to many of them including Bob Markini who wrote the book You Can Beat Prostate Cancer And You Don't Need Surgery. They were all generous with their time and all were passionate about
their decision. I admired them for their resolve and found myself wondering why I couldn't share their resolve. So I continued on talking to more patients, both proton and surgery (both
open and DaVinci). I also ran across a couple of seed implant patients who I spoke to as well, though I wasn't really considering it as an option.
In talking to Proton patients, I spoke to one Proton patient who was 10 years post treatment but had two successive rises in his PSA (not yet clinical failure, but was only one PSA rise away), and two other younger patients whose PSA nadirs were not at a favorable low point. This concerned me greatly. Maybe Proton Therapy was not the right option for me? But it certainly didn't seem as scary to me as surgery, and others were doing it.
Yet, by and large, the surgery patients I spoke to were doing well. Many had no incontinence issues post surgery. Others had some that resolved over the months after surgery. Actually, only on Healing Well did I encounter patients who had long term incontinence issues. Others spoke of ED issues, but again, many indicated that they had good recoveries or that drug interventions (not injections) were working well for them. This didn’t sound like the nightmare I had read about
in the books. I also focused on talking to younger men whose situation was more closely aligned to mine.
I continued on with my research compiling data relative to MY Gleason score and PSA -- thanks to my wife for helping me with this. I’d recommend this approach to anyone. It’s hard to decipher all the data and not all of it pertains to you. It was hard to carve out the time to do it, but my wife and I did it. I found that the success rates for disease free progression 5-10 years out based upon clinical stage were similar between Proton Therapy and Radical Prostatectomy. My clinical stage was favorable, T1c. However, my Gleason score was 3+4 not 3+3 and my PSA was over 4.0 and that put me in a higher risk group for recurrence with both treatment options.
After over a month of reading, I started to better understand the studies and results I was reading. It meant going back over some to reread them. Some divided groups based on post op pathology rather than clinical stage (pre op pathology such as biopsies). I learned that with post op clear margins and otherwise favorable pathology, the chances of having disease-free progression at 10 years were marginally higher for surgery than the general grouping I fell into in the published Loma Linda Proton Therapy studies for my Gleason score (3+4) and PSA (4.65). This was based on looking at numerous surgical studies too.
Note: for anyone who is not aware, www.pubmed.com offers a wealth of information and informative articles by researchers and physicians.
I figured if I did surgery, of course I'd do Robotic Laparoscopic surgery. So I found the best in Chicago. He readily put me on his surgical schedule with very little interaction other than the obligatory DRE. He was responsive to my emails and questions. I felt lucky to have found a competent and experienced surgeon in my own city. But still I continued on reading and still I had not yet ruled out Proton Therapy.
I then went to a consult with one of the PCa "masters" Dr. Catalona. You will find his name in many of the PCa studies. He first told me definitively I should have a radical prostatectomy. He did not waver when I asked him why
open vs. DaVinci. He explained to me that the
open surgery has no risk of adhesions in the abdomen which was one risk, for other medical reasons, I was happy not to take. I figured if I kept adding on risks, eventually one would stick! I also learned on my own that with an experienced surgeon recovery from
open surgery is on par with the DaVinci method in terms of continence and ED recovery. So right then I ruled out DaVinci surgery for me.
Now for those who are considering or have done DaVinci surgery, I’m not saying it’s not a good treatment option. It is a fine choice for many, but I had a bowel obstruction history from another much less significant issue and decided it had a risk for me that I didn’t want or need to take.
After reading what I will call the "anti surgery" books, I believed that when surgery failed, it was because the cancer had already spread and the surgery was ultimately not an effective treatment option. And if I had a 30%+ chance of surgery failing, I challenged him by asking why I should have surgery and then have to do radiation anyway?
To this Dr. Catalona pointed out two things that I hadn't really considered nor read anywhere. The first was that if there was biochemical failure after surgery, but the cancer was still at a locally advanced stage, he felt that adjuvant radiation had a better chance of being successful since there would be less cancer cells. As he described it, if you have a termite problem and you get rid of 99% of the termites, you still have a termite problem. The less there is to start out with, the better the chances of resolving the problem.
Secondly, at age 42, even if Proton Therapy was successful and killed all the cancer I have today, since I'd still have healthy prostate cells, I'd still have to worry about
whether I might get PCa again, even if I made it 10+ years without biochemical failure post radiation treatment. He suggested that my body had already proven to me that my immune system could not fight PCa. Since my normal life expectancy is longer at 42 than the average age of PCa patients, the chance of getting the cancer again was greater for me.
If I did get it again, I could be in my 50s or 60s and my options would be limited. I had read enough to know from studies that both surgery post radiation and cryosurgery -- the two recommended salvage options for local PCa failure post radiation treatment -- have worse outcomes in terms of the very side effects that scared me the most than having surgery as a primary form of treatment followed by radiation as a salvage treatment if ever needed. Or I'd be banking on whatever advances in treatment options might be available when and if I needed them.
I was still scared of the surgery, but what kept me
open to it as an option was that the statistical recurrence rate 10+ years out after RP was in the low single digits, and that seemed a chance for living hard to pass up. This also was a statistic that was undocumented for radiation treatments. Additionally, the data set for radiation was so small for my age group and much smaller than the data set overall for surgery. While I had read that no randomized studies had proven surgery to be effective at extending life, none had been done for radiation either.
So I rolled the dice on
open surgery and came up with negative margins (see my updated signature for more details). I had very little blood loss, very manageable pain, a short hospital stay, and a scar that doesn't offend my vanity. I know have the cath out as of yesterday and am dealing with some minor incontinence issue that I am hopeful will resolve within a reasonably short time. While it has not been the summer camp that Loma Linda markets, and hasn’t been a pleasant experience, it has been manageable.
It really does make one reflect on where medical science is in treating cancer. Still, the treatment most medical professionals feel is most definitive and effective is to cut it out. It's not emotional either. It's based on what they know about
cancer and what they don't know. It sounds so barbaric, but given the way cancer cells can spread, and the difficulty in controlling cancer once it has advanced, it seems only logical that until there are better methods of managing advanced cancer in later stages, surgery will continue on as the preferred treatment for operable cancers.
I have numerous friends and relatives in the medical profession. I asked all of them their opinions and asked them to make inquiries of their colleagues on my behalf. Across the board, 99% of the recommendations I received were to have surgery, except from Loma Linda and one Radiation Oncologist who recommended seed implants. Even at Mass General in Boston where they offer both IMRT and Proton Therapy, it was recommended I have surgery by the Oncology Team, and that recommendation included input from the Radiation Oncologist who said IMRT was a viable option for me if I didn’t want to do surgery, but he would recommend surgery.
On a final note, I am amazed by the number of people who truly believe that the medical profession is filled with people are simply interested in recommending surgery to "line their own pockets". I have heard this said a lot about
why Urologists recommend surgery and not radiation. It's amazingly simplistic to believe this to be the reason why a surgeon recommends surgery. It's funny, I have never heard an advertisement for Dr. Catalona on NPR, but I did for Loma Linda. And while Proton Therapy and other forms of radiation therapy certainly have shown promising success and are not to be discounted as viable treatment options for some, the Radiation Oncologists are certainly earning good incomes along with Urologists. And don't misunderstand me, I don't begrudge them their incomes given the effort and expense to learn and be successful in their discipline, not to mention the costs associated with malpractice insurance. I just believe that doctors are following the research and data and focus on being good at what they do. Ok by me.
Gleason scores from 4 pathologies of the same biopsy with 2 of 12 cores positive for cancer (if this isn't confusing to the patient...):
1) both cores 3+4 (Weiss Memorial)
2) one 3+4 and one 3+3 (Univ. of Chicago Hosp.)
3) both cores 3+3 (Mass General Hosp.)
4) both cores 3+4 (Northwestern Memorial Hosp.)
9/17/07 - Radical Retropubic Prostatectomy Surgery at Northwestern Memorial in Chicago by Dr. William Catalona.
and the winner is...post op Gleason score of 3+4.
Good pathology report with negative margins, no seminal vesicale involvement, no lymphatic or vascular invasion, bladder and urethral free and tumor volume was 5% of 27.3g. Amazing how something so small can cause such problems!
9/27/07 - Catheter removal...let the games begin...