About six years ago, I was diagnosed with prostate cancer. At that time, there were only two treatments available; robotic assisted surgery and radiation (either by external beams or seed implants). I chose seed implants, and so far the procedure has been successful and I continue to be cancer-free.
This week, an old friend from college (FSU) shared a post he made on Facebook about his recent experience with prostate cancer which detailed his research into the disease and included information on some of the newest treatments. Since September was Prostate Cancer Month, I thought I would share this brief account my friend emailed me.
First, here are a few facts taken from the American Cancer Society website (www.cancer.org) about prostate cancer.
In 2018 the ACS estimates 165,000 new cases of prostate cancer and over 29,000 deaths. One in nine men will be diagnosed with the disease during their lifetime.
As these stats show, if you’re a male over the age of 50, prostate cancer should be on your radar and you may want to consult with your physician on the advantages of getting an annual blood test to check your PSA (Prostate Specific Antigen).
A rise in PSA levels can be an early indicator of cancer and is the best first line of defense.
Catching the disease early can have a major impact on treatment options and the severity of side-effects. Luckily, prostate cancer is extremely slow growing and the mortality rate is low if it does not spread into other areas of the body.
Here is my friend’s story:
My PSA level showed up high at my last physical early last spring. My primary care physician told me that an elevated PSA could mean several things, including cancer, and to wait two months to check it again. The test two months later stilled showed it elevated and she recommended an MRI to take a look.
This is where my story starts to get interesting, and potentially helpful to others. I contacted several well-respected urologists in the Atlanta area, all with practices qualified to do the initial MRI to see if a cancer tumor was present.
They all confirmed they use MRI targeted biopsies.
There are three types of MRI-targeted biopsies: visual registration, software-assisted registration and direct in-bore. However, my physician suggested that I also reach out to a physician in Chattanooga who, according to her, is the only physician in the Southeast who does the in-bore or “real time” MRI guided biopsies.
The in-bore method gives the doctor updated images every 6 seconds confirming the position of both the biopsy needle(s) and the cancer tumor. According to this doctor, this increases accuracy and reduces the number of needles needed. I opted for the Chattanooga practice, and they found a suspicious tumor in the initial MRI. A few days later I went back for the in-bore biopsy, which confirmed both the size and severity of the tumor.
There are two major descriptions of prostate cancer tumors; the size in millimeters and the degree of advancement of the cancer. The size is a straight measurement of diameter. The degree of advancement is quantified by a Gleason Score. A complete description of a Gleason Score is beyond the scope of this article, but it is expressed as two numbers (scale of 1-5 each, with 5 being the worst).
The first number scores the largest mass in the tumor. The second scores the next largest mass. These are added together for a total score. The lower the first number and the lower the overall score the better.
I had a 4+3=7 Gleason Score on a tumor measuring 17mm. These numbers are shared since they factor in my selection of a treatment.
So, by mid-June, I knew I had cancer and began my research into treatment options. I read everything available on the internet published over the past eight years. I consulted with physicians and prostate cancer survivors. Through my research, I learned there are four major treatment paths available currently in the U.S.
Active Surveillance — where you do nothing immediately but keep a close eye on it for growth.
Surgery — done robotically and removes the entire prostate.
Radiation — either by external beams or by brachytherapy (seeds) planted in the prostate
High Intensity Focused Ultrasound — The HIFU treatment is newly approved by the FDA and is just now becoming more readily available by local practitioners.
Fortunately, the Chattanooga MRI specialist knew about, and was a proponent of, a fifth option which is also a HIFU treatment but performed in a different way and is only available in Europe.
It’s called TULSA Pro.
TULSA stands for Transurethral Ultrasound Ablation. It is basically HIFU done from the inside out rather than the outside in, making it more accurate (1.3 mm compared to 5 mm) than the HIFU done here in the states. TULSA Pro is currently under clinical trial in the U.S. (look up Profound Medical TACT) by over 20 major medical institutions. The final results of TACT will be released in early 2019, and they are currently under review for FDA approval.
After reviewing all of these treatment options, my research showed that all of the treatments were very effective in removing the cancer from the prostate but differed significantly in the frequency and severity of the two main side-effects — incontinence and impotence.
The problem I ran into was assessing how likely I might have one or both of these side effects for each of the five different options.
The oncologists and urologists were all pretty confident that the probabilities of these complications for their specific treatment (surgery, radiation or HIFU) would be extremely low — significantly less than 20 percent.
However, the more I read and researched, the more it seemed like the incidence of complications was much greater. This was the really tough part for me and for all of us who have, or might face, prostate cancer. Can the cure be worse than the disease?
In the end, with a Gleason Score of 4+3=7, I was not a candidate for Active Surveillance. The cancer was too developed to leave alone. Also, because of the size and the location right on the edge of the prostate, I decided surgery and radiation had too great a risk for the side effects. The HIFU here in the U.S. had merits, but it has a 5 mm margin outside of the target zone, and again there wasn’t enough room for that without risking side effects, I believed.
The TULSA Pro seemed like my best option because it offered the combination of good clinical removal of the cancer with the tightest accuracy.
I inquired about the clinical trial (TACT) currently going on for TULSA Pro to see if I could qualify to participate and have the treatment completed here in the states. However, this tumor was too big and Gleason Score too high. So instead, I opted to go to Bielfeld, Germany to the Alta Klinik and had the surgery performed by Dr. Lumiani – one of Profound Medical’s leading providers of the TULSA pro treatment.
The purpose of sharing this is not to recommend one treatment or another but to let your readers know of the different options of treatment for prostate cancer.
I didn’t just take the advice of the first professionals I spoke with, and I heavily researched opinions and recommendations before reaching a decision. From my astute PCP, I learned about the more advanced MRI methods being used by the doctor in Chattanooga.
That doctor told me about the TULSA Pro treatment being done in Europe — which from what I have been able to see, is not yet on the radar here in the states. I ended up having my procedure (TULSA Pro) in Germany and am now home in North Fulton and rapidly recovering — hopefully cancer and complication-free.
I sincerely hope you won’t ever need the information in this, but if you, or a friend, or loved one, ever do, I encourage you to learn, explore, research, question and arm yourself with as much information from as many resources as you can before making any final decisions.
If you do want to ask me more about my experience I am willing to talk to you but, again, I am not a medical person. I am just a guy who went through the process of prostate cancer discovery and treatment and am willing to share my experience to help other prostate cancer victims.
I created an email address that you can contact me with: firstname.lastname@example.org. Be sure to include your call-back number if you want me to call you.