I went for my annual physical in late December 2016. My primary care physician recommended I see a urologist because my PSA wat at 4.5, or .5 above the standard range. After seeing the first urologist at U Health and having had an MRI of the prostate and other tests done including urine and a PSA blood specific blood test, my PSA level was given as 8.1. This was February 2017. The U Health urologist then recommended I visit the urologist at U Health who performs various types of surgeries, including those of the prostate.
This urologist surgeon recommended I have a biopsy done. Mine was MRI guided, which ensures greater accuracy at extracting specimen found to be suspicious of cancer per the earlier MRI. The results came back in June 2017. Twelve cores were obtained as well as three in the areas highlighted in the MRI. The good news was that the cancer was contained within only one half of the prostate and had not penetrated the shell or metastasized. The not-so-great news was that of the six cancerous specimens found, three had a Gleason score of 6 and three had a Gleason score of 7.
A few days after the biopsy, the nurse phoned me with the results of the pathology report. I was prepared to accept I had cancer, since tests done by my first urologist showed I had a 4 out of 5 chance I had some sort of cancer and the MRI images pointed to that as well. Prior to the results of the nurse's call, I had not yet read much on prostate cancer or the anatomy of the prostate. I was just waiting for the day of "the call" and the visit with the surgeon. The surgeon recommended either robotic laparoscopic prostatectomy or HIFU with the Ablatherm machine, both of which are procedures he performs. My wife Sonia asked him what would he do if he were in my shoes, and he stated he would have robotic prostatectomy done.
Of course I was absolutely ignorant at the time of my visit about either treatment options and felt I needed to do research. I subsequently spent hours upon hours reading and becoming educated on the subject - the prostate and its surroundings, the various treatment options, etc. One of my first thoughts was to turn to a friend whom I knew was undergoing radiation treatment for prostatic cancer. While he was helpful and offered his experiences and willingness to help, I felt I should not be delving too much into his private ordeal. I soon landed on the American Cancer Society's cancer.org website which was a highly valuable resource. It provides a wealth of information on the various treatment options available. I also came upon this wonderful website, which is a vast source of information as well as getting firsthand testimonials from people who are going through what I was experiencing.
At cancer.org I read about all treatment options available and immediately ruled out any kind of external beam radiation, except perhaps for proton therapy. Since I work, I did not want to go through a daily schedule of treatment possibly lasting weeks. I also didn't feel comfortable with the thought of non-focused radiation passing via other parts of my body to reach the cancer in the prostate. Neither was I happy with the side effects of radiation.
I quickly narrowed my choices to robotic prostatectomy and HIFU (High Intensity Focused Ultrasound). Later on throughout the several weeks of making a decision, I also began to consider proton therapy.
I quickly became enamored with HIFU (though not its $25k cost since insurance does not cover it). It seemed to be a clean and elegant way of getting rid of the cancer without radiation. In the hands of experts, everything about HIFU is simple: enter the outpatient treatment center in the morning and leave in the afternoon. No incision with surgery, little side effects, and proven to succeed - maintaining high degrees of continence and potency. I contacted several specialists who practice using the Sonablate system (in lieu of Ablatherm) including one in Mexico, one in Sarasota, and one in Miami where I live. My initial research led me to believe that HIFU was for me. Since I only had cancer in half the prostate, why not treat that portion with HIFU in the targeted areas and be done with the cancer? Seemed logical to me. But I had also read that HIFU may not entirely ablate all the cancer (despite the specialist's claim to the contrary), not 100% anyway. I'd read that the one cm long strand of each ablation may leave gaps between each ablation. This thought always stayed with me, but I figured if the cancer ever returned, I could always have the robotic prostatectomy done at a later stage in life and have 100% of the cancer removed at a later stage in my life. I was convinced I was ready to dish out $25k, until I visited the Sonablate specialist a second time. In this meeting, he said something that blew my mind. He said: "let's just ablate the entire prostate rather than just the cancerous half". What!? I asked myself why would I want to ablate the whole gland? Wasn't the whole idea of HIFU to target cancer specific areas? Why would I want my urethra within the prostate as well as the entire gland ablated? All that would remain is the shell. All along prior to this meeting I had been thinking of HIFU as the most elegant and preferred choice because it preserved my prostate including the urethra within it, would kill the cancer, and the odds of continence and potency as extremely high. However, I was not prepared to hear this statement. If the entire gland was to become nothing more than a shell, what was the point of keeping it? Also, what if there might still be a few cancerous cells remaining near the shell which could grow in the distant future, requiring removal of the shell or resorting to radiation? Right there and then I decided that it was better to have the prostate removed once and for all and "be done with it", removing 100% of the cancer. Saving the $25K was also a factor. I also reasoned, why wait for some future time when I'm much older and perhaps not as in good health to have treatment procedures done again if the cancer cam back?
Robotic Laparoscopic Prostatectomy
So I had read that robotic prostatectomy was the "gold standard" and came back around to deciding on this treatment option. Concerns remained about what I had read with men choosing this option. Some men were not continent, and more were impotent. For me, quality of life and full continence were paramount, while maintaining potency was secondary. After more research, it became evident to me that the skill and experience of the doctor performing the surgery made all the difference. An experienced surgeon having done many robotic prostatectomies was essential to maintaining continence and potency. The location of the cut in the urethra to not damage the external sphincter and the preservation of nerve bundles to maintain potency - in the hands of a skilled and qualified surgeon - would likely result in success.
So I went back for a second meeting with my U Health urologist surgeon. By this time I had done more research on him and found that he was a leader in the nation in robotic procedures. I had seen you tube videos of his skill in performing a nephrectomy using the Da Vinci system and seen him leading doctor's conferences. That was comforting. However it was not clear to me his level of experience performing robotic laparoscopic prostatectomy- the prostate itself. I had read it was a confined space in the abdomen. I had also read that having done at least 300 of these was a good standard. So I asked him how many of these he had performed, to which he stated close to one thousand. I figured he'd been practicing the Da Vinci system since the mid 2000's, so that would put his claim at roughly 100 per year. Sounds reasonable. In the end, I simply trusted him and his abilities and decided to have the procedure done with him. The operation was schedule for August 29, 2017.
I write this long story five days post-operative procedure. From all I can tell, everything is proceeding normally. I still have the catheter and have all post-op symptoms normal to the procedure. So far so good. The catheter comes out in two days. We'll see about full continence and potency in the weeks and months to come. My doctor stated 99% of his patients regain continence. Based on my post of experience so far, I have no reason to not believe him.
I had read about the marvels of proton therapy and looked into that briefly as well. Focused external beam radiation on the cancerous tissue seemed appealing. No radiation beyond the targeted areas. However, losing work for two months because of a prolonged stay outside of Miami was not an option. Except that I became aware that Miami Cancer Institute had just opened a state of the art proton treatment facility. Great I thought, I could have my daily treatments early in the morning and still go to work on a daily basis. As it turned out, MCI had not yet treated any new patients and they were still doing test procedures on their new equipment. I wasn't willing to wait any longer to have my C out or be the first to undergo treatment at MCI. So this cemented my decision to go forward with robotic prostatectomy. In the end, even if available, not sure if I would have gone with proton therapy over prostatectomy. Both options were competing head to head.
Had my catheter removed a week and a half post op. Great for that to be out! At time of visit, doctors weren't around and no one was ready to give me the results of the pathology report, which I had yet to receive from doctor. Only nurse's assistant and nurse saw me. Somewhat disappointing I didn't get to hear from doctors. Nurse checked the record but only after my request to do so, and found the report. Good news nurse said - negative margins, so no cancer elsewhere. All cancer removed with prostate.
Scheduled an appointment with doctor three weeks after catheter removal since I wanted to hear more details from the surgeon other than what my wife was told day of surgery: "it went very well". This surgeon is good but doesn't talk much to his patients unless you're after him.
So I finally got a meeting with my surgeon a month after the operation. He sends his associate doctor to see me first, and I get a grand total two minutes with the surgeon after all my questions were answered by his colleague. His colleague answered all my questions as well as queries about the ED and incontinence I have. The pathology report had Gleason as 4+3 in the most aggressive base area of the prostate with class T3a. Since this particular area of the cancer was at the base and therefore near the bladder, it had almost started to emerge from the prostate shell, I surmise ready to invade the prostate. Good thing I took action via radical prostatectomy because the surgeon was able to excise the cancer cells a bit beyond the prostate base itself -probably a millimeter extension. I asked whether HIFU would have gotten to that spot and the answer was not as resounding. In short, glad I had the prostate removed which allowed the surgeon to excise the cancer a bit beyond the prostate shell itself. I'm told all cancer was excised.
During the requested follow up visit, the surgeon's colleague stated I'm making good progress after only one month since I'm able to hold my urine all night during sleep hours. I tell him about the frequency to to urinate during the day. Two pamper changes only per day is good progress he says. I wasn't doing Kegel exercises and he recommended I start on that, which I am now doing. I told him about the ED and he has prescribed Cialis. Says ED is normal at this stage in time and that Cialis is good to ensure the "memory" of that function stays intact.
At the follow appointment to see the surgeon, his doctor colleague successfully fields my questions about the pathology report and all the symptoms I have. Finally, after ten minutes with his colleague, the almighty surgeon shows up and gives me two minutes. I ask him details about the operation itself. My question to him primarily - was he able to preserve one, two or no nerve bundles? He states both nerve bundles were preserved. So now I need to wait and see how things unfold in that department. I congratulated him on what seems to me to have been a skilled and successful operation, based on my recovery to date. All symptoms I have are normal side effects after only one month post-op. The fact the surgeon doesn't make himself available for long chats with me does not negate the fact he is skilled at his craft, or at least that's my opinion at this point in time.
I was asked to come back in two months, at which time my first PSA readings will be available. Will update at that time.
Had my PSA taken 12/1/17 and the results were good news: less than 0.1, so cancer free. Continence at on 12/1 was somewhat disappointing as I was not among the roughly 75% who are continent. Notwithstanding, I write this on 1/26/18 where I'm happy to report I am nearly continent. Went from padded underwear to wearing just pads four weeks ago and find that I am almost at the point where I will not need pads. All in all, everything is going well. The ED issues I still have I've been told will take time. Possibly a year to a year and a half. So patience in the meantime. Life is pretty good and being cancer free is huge. Many thanks to the high above!
Valentin's e-mail address is: sixtor AT sixtoarch.com (replace "AT" with "@")