Posted 9/7/2020 11:39 AM (GMT -7)
From SubDenis:To newly diagnosed men with Prostate Cancer.
The purpose of this letter is to try in a succinct way to describe the beginning of your journey based on my experience and that of hundreds of men that I have interacted with in cancer forums and support groups.
First, the shock, sadness, anxiety, and aloneness that you may be feeling is very normal and it sucks. Cancer is a most devastating word that shocks our psyche in a way that may be the most devastating news we have experienced.
Second, >96% of us will not die from prostate cancer, fact!
Third, my experience suggests we are on a roller coaster ride and it will be a long one. There will be times of darkness and times of light. Just hang on because the beginning of the ride is the wildest portion.
Finally, each of us is unique in how we experience PC, how we make decisions, and how we share what we are feeling. I strongly encourage all to share what they are going through with someone or the cancer will eat up your spirit not just your body.
The key to fighting this disease, in my opinion, is a balance of learning and living, of fear and hope, of facts and feelings! The medical community, unfortunately for most, is about making money. So, you will be sold treatments and the salesperson may be biased towards their treatment specialty. We need to do our due diligence. I see guys who take the first doctor’s advice as fact and go forward to later offer regrets. Most of us would not walk into a car dealer and buy the first car they offer, so let us make sure we explore all the options.
The typical path to PC diagnosis is an elevated PSA and/or abnormal Digital Rectal Exam (DRE) by our Primary Care Doctor. Most of us have no other symptoms. We are then referred to a Urologist who repeats those tests and if our PSA is above 4.0 or has changed significantly in the last year or there is an abnormality on the DRE the urologist will suggest a biopsy. In essence needles are inserted transrectally or transperineal to take pieces of the prostate which are sent to a pathologist who will study the sample and write a report.
There has been much advancement in the biopsy process. I cannot describe all of that in this letter. However, there is two basic types which are referred to as blind and guided. Without knowing much, it is clear to me that “blind” cannot be as good as “guided”. The gold standard is to have a high-fidelity MRI to see if there are lesions and use that MRI image along with an ultrasound to guide the insertion of the biopsy needle to ensure the lesions are sampled. Also, they will sample other parts of the prostate to ensure adequate coverage. The biopsy samples are sent to a pathologist for diagnosis.
The pathologist will write a report about the samples. There will be a lot of technical information in the report. Most of us get a condensed version from our Urologist. I was told that I had 4 of the 12 samples with cancer and the Gleason score was 6. Gleason was a doctor who invented a scoring system. Anything less than 6 is not cancer and the grade goes from 6 -10. Each score is made up of two numbers. So, my G6 was a 3+3. The pathologist looks at the slides of the biopsy material and determines the most prevalent cancer type and the second most prevalent and scores each one. Again, in my case it was all graded as 3. So, 3+3= Gleason 6. I also recommend getting a second opinion pathologist like from John Hopkins cancer institute. When my slides were looked at the second time, the pathologist upgraded one of the samples to a G7 (3+4). Now in the report they will also give you a % of the core that was cancerous. Initially all of mine were < 30%. The second opinion found <5% of one core to be pattern 4. Your Gleason score is the highest number. So, I am a G7. The pathology report will also identify and other abnormalities like PIN or seminal vesical invasion. These are indications of how well contained the cancer is in the prostate.
The key to the next phase of the rollercoaster ride is have a good technical understanding of your cancer. Most of us hear about our cancer from the urologist who ordered the biopsy. Most urologist are also surgeons and often will recommend surgery. This is a most critical step in the journey. Remember the car analogy, shop around before deciding. My Urologist was trying to schedule my surgery during my first visit when we thought I was a Gleason 6.
I am not trying to defend or disparage any treatment choices, rather help you to understand the basics of what is available. There are three basic approaches to prostate cancer treatment. Active surveillance, surgery, and radiation. And radiation has multiple choices including Brachytherapy (2 types). External beam, proton, and photon radiation treatment. To learn about radiation, one must see a radiation oncologist.
Describing each of these and the appropriateness for each Gleason score is out of the scope of this letter. However, each of us must learn all we can to be fully informed of the options we have. Now most of us are not doctors and much of the science behind this is very technical but we can learn from others, there are very good layman books available and we have the power to ask questions. We must be fully informed to make a quality decision. My two favorite books are Patrick Walsh’s Guide to surviving Prostate Cancer and Mark Scholz’s Key to Prostate Cancer. Also, there are numerous Facebook groups that focus on Prostate Cancer and there are other forums Like Healingwell.com.
Once we have investigated the options, we must decide. I have boiled down the decision making to the following. I would ask you to evaluate the options against these criteria. First, the main treatments have the same statistical outcome for success within a couple of % points. So, I wanted to know the difficulty of the procedure (how many sessions, hospital stay, etc.), the recovery period and limitations (can I work or golf in my case), the probable side effects. I say probably because all the treatments have outlier side effects but most of the treatments have very specific probable outcomes.
Now there is another critical aspect of the decision making for most of us and that is including our spouse, partner, or significant advisor to the process. My wife was so important to the decision making. She heard things that I did not hear, ask powerful questions, and was as vested in my outcome as I was, so have a partner during this journey. And this is going to be a slow process! Took me 6 months to get to treatment and most guys go at least three months. The good news for most of us is this amount of time will not change the outcome.
Okay I lied, I said succinct! However, these are the basic tenants of my experience during the early part of the journey. What I know is there are times of doubt, fear, anxiety along with hope, confidence, and much caring from those we encounter on the journey. If I could give a gift to a newly diagnosed PC warrior it would be hope and fellowship. Alone is a scary place once you are diagnosed with cancer. Through forums and support groups we no longer must be alone.
In closing, please be clear that we care and are here with you on this journey. Ask questions, share your feelings, and lean on us when you need to. I wish you peace!