Let Me Introduce Myself …
I am a 66-year-old man on Active Surveillance (AS), currently a standard protocol (which some would call a treatment) for those with low and favorable intermediate-risk prostate cancer (PCa). After a March 2018 12-core random biopsy (TRUS), the subsequent pathology report revealed two Gleason grade 6 tumors...
More than four years later, Joel Nowak, Executive Director of CancerABCS, invited me to establish an ongoing blog about Active Surveillance – referencing my experience and observations as a patient who has researched this cancer since my diagnosis. (You may find my brief biography in this blog site's "About" drop-down.) This ongoing research has made me aware of PCa's complexities. And understanding these complexities helps me navigate my AS journey, which I share with others. AND - occasionally I will invite guest bloggers to share their Active Surveillance perspectives.
A Nod to Prostate Cancer Awareness Month
A week into September 2022's Prostate Cancer Awareness Month, there has been no scarcity of organizations, advocacy and support groups, and in-person and virtual events commemorating this designation. See the White House proclamation below.
Click above for Full Proclamation
These serve as reminders to men and their families, particularly in the US, that prostate cancer is the leader of the pack of cancers that will affect 1 in 8 men over their lifetimes. However, most men will die with prostate cancer than from it. And there is no shortage of references to PCa on Dr. Google, widely consulted for information on the disease. Books are plentiful, as well as opinions – the latter from various sources, including medical journals, doctors and specialists, and those diagnosed.
So, presumably, the message illuminated in this month (the designation originated in the late 1990s) is "be aware." But be aware of what? How can it affect my loved ones or me? At what age? Should I be mindful of statistics? Know the symptoms? Become familiar with screenings and tests? Ask my doctors? Read? Watch videos? Do I have a genetic/hereditary disposition for prostate cancer - or any other cancer, for that matter? Does health insurance cover everything? Should I be eating particular foods to avoid disease? Vitamins? Supplements? I've heard of remissions; is there a cure?
Questions abound.
The road to prostate cancer awareness is collecting information, learning to choose your sources, and becoming skilled in discernment. What's factual? What does science say? Do your sources have anything to gain from how they relay information? If you hear "facts" from authorities and experts, should they all be believed?
My answer? It's all about your research approach – weighing disparate views and keeping up to date on clinical studies. YOU need to engage, be a seeker, or appoint someone who will act as one for you.
Did I know of this when my urologist administered a prostate cancer biopsy more than four years ago due to a jump in my PSA? I did not. I didn’t have the information then that I have now..
But more on that later. I begin my patient story here. It's a windy road, folks….
In The Beginning …
It all started as part of a routine urological visit in the Spring of 2018 (at age 62), a PSA blood test [1] resulted in a score of 4.4. My urologist at the time (referred to as Dr. A) asked me to return six weeks later for a follow-up PSA which had climbed to 5.01.
(Note: Due to a PSA spike in 2014, Dr. A had performed a random TRUS [Transrectal Ultrasound] biopsy, [2] and the results were all benign). I was satisfied with whatever explanation I received and did not give the procedure any considerable thought at the time.
Four years later, in 2018, Dr. A ordered a Multiparametric 3T Prostate MRI [3] due to the 5.01 PSA. I paid no attention to the MRI report (graded a PIRADS-2) [4] , and Dr. A performed a TRUS (trans-rectal ultrasound) biopsy in his office on what I would consider a massage table (similar to the biopsy I had undergone in 2014). The biopsy pathology report [5] revealed 2 out of 12 cores of Gleason 6 tumors [6] . At the time, I did not know anything about other types of biopsies, for instance, something I would later learn to be an MRI-guided biopsy [7] . I underwent this TRUS biopsy on April 16, 2018. On Thursday, April 19, Dr. A called me with the results and asked me to see him four days later, on Monday, April 23.
Before my appointment to review my results with the Dr, I researched Gleason 6 tumors. I learned about low-risk, low-grade prostate cancer and an option called Active Surveillance (AS) [8] – a protocol for regularly monitoring my prostate condition. On Monday morning, April 23, Dr. A reviewed the results with me and summarized options for treatment, surgery, radiation, and the third being a "watch" approach. Since I had done my homework and learned about Active Surveillance, Dr. A agreed that AS was an option. He stated that if I were to embrace Active Surveillance, he would need to perform another biopsy to "make sure there were no undiscovered aggressive tumors." He suggested I have another biopsy in two months’ time.
Within the next two weeks, I sought out a second opinion re the suggestions I have another biopsy. This second urologist (Dr. B) told me that I shouldn’t have another biopsy for at least another six months.
I called Dr. A and asked him again why he felt he needed to do another biopsy so soon. He said it was standard procedure. I asked him where I could find evidence of this “standard procedure.”; he had no answer - I was to just trust him. I then consulted with a third urologist (Dr. C) at a nearby teaching hospital, who recommended a "Risk Stratification" biopsy in 6 months. [9]
In the meantime, I was getting up to speed on everything around biopsies and imaging. But as distraught as I was, I continued to consulting with others. One individual told me I should never have had a biopsy in the first place, based solely on a PSA spike. Leaving his office and in a taxi on my way home, he called me on my cell phone and revised his statement: "HE would never have had a biopsy if HE were ME."
Where was Lucy?
I became more distressed and wondered why Dr. A wanted to perform another TRUS biopsy – and so soon. Did he sense he missed something or followed an improper procedure? I decided to refuse it, and never saw him again.
A few weeks later, I traveled to an out-of-state, well-regarded institution on the east coast. In summary, one of the chief urologists there (Dr. D) told me that I was a candidate for his Active Surveillance program, stipulating that I undergo another MRI and a confirming MRI-guided biopsy from 6-12 months after my original biopsy. (While I was there, his radiology department looked at my first MRI and increased the grading from PIRADS 2 to PIRADS 3.) He also spoke of my other problem (which he described as BPH [10]) and suggested I needed to receive medical or surgical treatment. He said it was worth giving medication a chance to work for six months. Dr. D did not speculate on what procedure would be in order should my BPH not improve. He stated that I could have significant bladder problems down the road if I left it untreated.
In the meantime, I researched supplements and foods to bolster good prostate health and help with my urinary issues. I had already changed my nutritional routine to a Mediterranean diet after a heart attack in September 2017. With the cancer diagnosis, I additionally stopped all alcohol and caffeine intake.
However, because of my confusion with the disparate opinions I received from several doctors, I soon found myself without a urologist in New York.
I also contacted a urologist who had retired several weeks earlier and put me in touch with a well-known specialist in another state (Dr. E) to have an MRI at his office. He immediately gave me a snarky opinion of the administration of my original MRI and tried to sell me on his methods. I did not continue any further discussion with him.
I began to lean towards an option of joining an established AS program at a respected institution, but upon hearing their requirements I declined. I recall feeling like I was twisting in the wind with many opinions and other tests to consider.
The bottom line was that I knew I had low-grade prostate cancer and almost simultaneously became aware of a controversy around Gleason 6 cancers – specifically whether they were indeed cancers. I felt unsettled that there was a 30% possibility that I harbored other tumors that may have been more aggressive in the remaining 99% of my prostate.
I recall being anxious on this rollercoaster ride, and the onset of insomnia with overloaded information rendered me depressed about my situation. Nevertheless, I pushed forward. In the summer of 2018, I sought one more review of my first MRI. A support group leader referred me to an expert at the NIH, and the specialist reassessed the MRI image, modifying the PIRADS score to 4/5. His cover letter accompanying the report reminded me of the subjective nature of MRI readings, and he recommended an MRI-guided biopsy but added that his hope it would be clear, with no signs of aggressive cancer. I was referred, through a fellow support group member, to an interventional radiologist who performed of an alternative to a TRUS. The trans perennial biopsy (TPUS) - already prevalent in Europe - was available in the US, albeit in select locations. This provider at Brigham Women's Hospital (also known as the Dana Farber Cancer Institute), had solid experience with the TPUS.
Moreover, this provider offered patients the possibility of an "in bore" MRI guided biopsy - inside an MRI tube with live images taken for the specialist to pinpoint areas in the prostate - in addition to targeting the areas in the Pirads4/5 interpretation. . I traveled to Boston for this biopsy, and the doctor targeted nine areas, the samples of which I later learned were all benign. I could now embrace an Active Surveillance protocol.
I want to add one note of gratitude and thanks to Steven Corn of Metis Advocacy, my patient advocate for the first several months after my diagnosis. His patience and dedication were invaluable, and I learned a great deal from him - leading eventually to my own research and eventual advocacy for those newly diagnosed and on Active Surveillance.
Next: The third biopsy at Brigham on September 13, 2022, and What exactly is the Active Surveillance protocol? And does “one size fit all?”
Later: Biomarkers including PSAs, 4K tests, DREs.
Are there comparable imaging tests to compliment the MRI?
What are the divisions in the PCa medical community around AS?
What’s “nutrition and exercise” got to do with any of this?
Which groups and organizations offer the best venues for support?
And much more. Subscribe to this blog for the latest!
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GLOSSARY OF TERMS:
[1] PSA
A protein made by the prostate gland and found in the blood. PSA blood levels may be higher than normal in men who have prostate cancer, benign prostatic hyperplasia (BPH), or infection or inflammation of the prostate gland. Also called prostate-specific antigen.
[2] TRUS BIOPSY
A procedure in which a sample of tissue is removed from the prostate using a thin needle that is inserted through the rectum and into the prostate. Transrectal ultrasound (TRUS) is usually used to guide the needle. The sample is examined under a microscope to see if it contains cancer. An alternative approach to the prostate is through the perineum and is called a transperineal biopsy (TPUS), where the urologist passes the biopsy needle through the perineal skin and into the prostate, rather than passing the biopsy needle through a potentially contaminated rectum. The biopsy needle is still guided by an ultrasound placed in the rectum. The TPUS has been used widely in Europe - and it is gaining traction in he US, primarily as a result of studies showing less risk of infection that TRUS,
[3] 3T Prostate MRI
An imaging procedure in which radio waves and a powerful magnet linked to a computer are used to make detailed pictures magnet and makes better images of organs and soft tissue than other types of MRI do. It is used to make images of the brain, the spine, the soft tissue of joints, and the inside of bones and blood vessels. Also called 3 Tesla magnetic resonance imaging and 3 Tesla MRI. Multiparametric (MP) MRI is an emerging advanced imaging exam. It combines three MRI techniques to provide information on the prostate's structure and function.
[4] PIRADS
PI-RADS (Prostate Imaging–Reporting and Data System) is used to standardize interpretation of prostate MRI, improve early diagnosis and treatment, and reduce unnecessary biopsies. In the PI-RADS scale, each lesion is assigned a score from 1 to 5 indicating the likelihood of clinically significant cancer. Want to know more about PIRADS? The American College of Radiology (ACR) explains here. https://www.acr.org/Clinical-Resources/Reporting-and-Data-Systems/PI-RADS
[5] PATHOLOGY
The description of cells and tissues made by a pathologist based on microscopic evidence, and sometimes used to make a diagnosis of a disease. Everything you want to know about prostate pathology: See world-renowned Jonathan Epstein explain (h/t Prostate Cancer Research Institute: https://youtu.be/9ff-94Z5Ykc
[6] GLEASON SCORE
A way of describing prostate cancer based on how abnormal the cancer cells in a biopsy sample look under a microscope and how quickly they are likely to grow and spread. Most prostate cancers contain cells that are different grades. The Gleason score is calculated by adding together the two grades of cancer cells that make up the largest areas of the biopsied tissue sample. The Gleason score usually ranges from 6 to 10. The lower the Gleason score, the more the cancer cells look like normal cells and are likely to grow and spread slowly. The Gleason score is used to help plan treatment and determine prognosis (outcome).
[7] MRI-GUIDED BIOPSY
Prostate biopsy uses ultrasound or magnetic resonance imaging (MRI) guidance and a needle to remove tissue samples for lab analysis. As of this writing, the MRI provides more detailed images of the prostate than ultrasound. Mp-MRI is an advanced imaging method that combines three MRI techniques to provide information on the structure and function of the prostate.
[8] ACTIVE SURVEILLANCE (AS)
A plan that involves closely watching a patient’s condition but not giving any treatment unless there are changes in test results that show the condition is getting worse. Active surveillance may be used to avoid or delay the need for treatments such as radiation therapy or surgery, which can cause side effects or other problems. During active surveillance, certain exams and tests are done on a regular schedule. It may be used in the treatment of certain types of cancer, such as prostate cancer, urethral cancer, and intraocular (eye) melanoma. Active surveillance is a type of expectant management. Also called active monitoring.
[9] RISK STRATIFICATION
Risk stratification is a screening test whereby a population at potential risk (all cancer survivors) are offered a test (risk stratification tool) to determine those who need further investigation, intervention or support. A fusion biopsy procedure combines the pictures from an MRI scan and an ultrasound to create a detailed 3-D image of the prostate. This procedure makes it easier to see an abnormal area of tissue in order to guide the biopsy needle into the abnormal area.
[10] BENIGN PROSTATIC HYPERPLASIA (BPH)
Also called prostate gland enlargement, BPH s a common condition as men get older. An enlarged prostate gland can cause uncomfortable urinary symptoms, such as blocking the flow of urine out of the bladder. It can also cause bladder, urinary tract or kidney problems.
There are several effective treatments for prostate gland enlargement, including medications, minimally invasive therapies and surgery. To choose the best option, you and your doctor will consider your symptoms, the size of your prostate, other health conditions you might have and your preferences. -
Feel free to leave comments below, subscribe to the blog (SEE BELOW), and email me if you have any questions: martin@cancerabcs.org. In subsequent segments, I will share, from a patient, patient advocate, and research analyst's perspective, what I have learned and the various levels of awareness I've gained on this journey.
And again, we will invite guest bloggers to chime in re their experience on AS.
