“Treating My Osteoporosis and My Prostate Cancer”

“Treating My Osteoporosis and My Prostate Cancer” (Jeff Dwyer) [#65] Jeff Dwyer, Allen Morris, Brad Power, Paul Van Camp July 26, 2023 “Unfortunately, I have a bad habit: I don't listen to anybody. I keep asking questions. ” – Jeff Dwyer “I’d written … a real letter, not a digital communication. Nobody receives a real letter any more, so they’ll open it and hopefully read it and respond.

” – Jeff Dwyer “I had been investigating radiation treatment options using proton beam therapy because I had read a lot about it, and it sounded like a wise option if I could find a provider… I selected my radiation oncologist, and I … contacted the … facility myself.

” – Jeff Dwyer Meeting Summary Jeff Dwyer is facing complex decisions about additional treatment for his advanced prostate cancer following his second prostate cancer recurrence, signaled by an uptick in his PSA (Prostate Specific Antigen, a blood test that monitors his prostate cancer progression).

Jeff's decision is complicated as he trades off choices of treatments for his prostate cancer and treatments for his bone disease and heart disease. The most likely course of treatment for his prostate cancer, androgen deprivation therapy, has negative side effects for bone strength and muscle strength (like the heart).

Jeff has resisted taking drugs for bone strength due to his research on the side effects. But Jeff has been encouraged by his primary care physician to begin taking drugs to address his osteoporosis -- the bone disease that develops when bone mineral density and bone mass decreases, increasing the risk of bone fractures.

What are Jeff’s best treatment options that can thread the needle between suppressing his prostate cancer and treating his bone and heart disease? Who is Jeff Dwyer? Jeff Dwyer is a 76-year-old former literary agent and owner of a bookstore. He leans into researching his treatment decisions. He surveys the medical literature and reaches out to researchers for advice on his course of treatment.

He has gone far afield to find the best experts and the best treatments, and he has traveled several times across the country for testing and treatment. He lives with his wife in Northampton, Massachusetts, next to the Amherst colleges. What is Jeff's medical history? Jeff was diagnosed with aggressive, Stage 4 (metastatic) prostate cancer in May 2019.

(His Gleason scores were 9/10, indicating a high grade, very aggressive cancer). He had a robotic radical prostatectomy in September 2019 at Mass General Brigham, followed by coronary arterial bypass surgery at Mass General Brigham in July 2021.

“Treating My Osteoporosis and My Prostate Cancer” (Jeff Dwyer) [#65] antigen). He received 34 proton beam sessions of stereotactic radiotherapy (radiotherapy from many different angles on the tumor) at the University of Pennsylvania in September

tick in his PSA (a blood test for prostate specific

“Treating My Osteoporosis and My Prostate Cancer” (Jeff Dwyer) [#65] antigen). He received 34 proton beam sessions of stereotactic radiotherapy (radiotherapy from many different angles on the tumor) at the University of Pennsylvania in September 2022. His PSA was 4.9 after doubling when he began treatment in 2019, and his first prostate cancer recurrence following a PSA of 0.21.

His PSA went to undetectable then began to rise again. Now his second prostate cancer recurrence has occurred with a PSA of 0.21.

A PSMA PET CT scan (prostate-specific membrane antigen positron emission tomography scan, an imaging test used to detect prostate cancer throughout the body) at Dana Farber in May 2021 revealed a small bone metastasis (cancer tumor away from the initial site) on his sacrum, a shield-shaped bony structure that is located at the base of the lumbar vertebrae and that is connected to the pelvis.

During stereotactic radiotherapy at UPenn, the radiation oncologist treated the bone met and also his prostate bed and lower spinal area. An MRI (magnetic resonance imaging) at UPenn following the stereotactic radiotherapy in October 2022 showed that the bone met was no longer present.

Jeff's medical treatment is complicated by coronary artery disease and congestive heart failure, which caused him to have quintuple coronary artery bypass surgery two years ago.

Jeff's lower back pain led to a DEXA scan (an imaging test that measures bone density and strength), and a follow-up computed tomography (CT) scan and MRI of his spine at Mass General Brigham's Spinal Center, and consultation with an orthopedic surgeon. Jeff found out that he has bone density los s. He has five spinal compression fractures.

The orthopedic surgeon recommended no intervention since four of Jeff's five older compression fractures had healed. The orthopedic surgeon predicted that Jeff's recent fifth compression fracture would heal eventually. Jeff has been doing physical therapy and weight training exercises and taking pain medications. He is seeing some progress.

The orthopedic surgeon recommended consultation with an endocrinologist because of Jeff's advanced prostate cancer. Jeff has been updating his dental work in anticipation of the side effects of weakening of his bone strength from hormone therapy. He has had numerous crowns done over the years. Recently he discovered decay below five crowns following gum recession.

Because removal of the crowns and the decay below was deep, and the work caused root inflammation and a lot of pain, he's had two root canals following three of the five crown and decay removals. He has one tooth remaining to be processed. He had the extraction and implant work done at the Tufts faculty care practice in Boston. The dental work should finish by September. What should Jeff do next?

e has one tooth remaining to be processed. He had the extraction and implant work done at the Tufts faculty care practice in Boston. The dental work should finish by September. What should Jeff do next? Jeff expects that his oncologist will order a PSMA PET CT scan soon and recommend that he begin some form of hormone therapy to address his recent prostate cancer recurrence.

(Hormone therapy for prostate cancer is any treatment that blocks testosterone production or action.) Thus far, he has had no hormone therapy because of the cardiac side effects, but he may need to risk the cardiac side effects to arrest the prostate cancer progression.

“Treating My Osteoporosis and My Prostate Cancer” (Jeff Dwyer) [#65] Jeff is researching hormone therapy alternatives now. Jeff's Dana Farber oncologist referred Jeff to an endocrinologist.

(Endocrinologists specialize in helping men undergoing androgen deprivation therapy for prostate cancer to monitor for any potential long-term side effects and treat any side-effects early to maximize quality of life and maintain general health.) Jeff is considering estrogen (tE2) for his androgen deprivation therapy (ADT), eventually morphing into bipolar androgen therapy when the tE2 ADT fails.

He would be avoiding the other hormone therapy drugs and their bone weakening side effects by using tE2, which improves bone strength, even though it may not be as effective as other ADT for suppression of prostate cancer. This program would be self-administered, non-standard of care, so he doubts that he will find any support at Dana Farber from his medical oncologist or endocrinologist.

This is a pending open question for him. When Jeff asked his radiation oncologist at UPenn what she suggested that he should do if his prostate cancer returned, she suggested that he should return to UPenn for further proton beam radiotherapy of any recurring mets. So radiation plus hormone therapy are a likely next treatment.

Discussion Jeff engaged in an email conversation with pathologist and advanced prostate cancer survivor Dr. Allen Morris about his case, which clarified some fundamental points for thinking about his testing and treatment, especially whether he had had a recurrence and how big of a recurrence it was, i.e., how aggressive his prostate cancer is.

This has a big influence on how much he needs to focus on treating his prostate cancer vs. treating his bone and heart issues. If he has a recurrence, then he needs to go get some prostate cancer drugs like androgen deprivation therapy. But if Jeff hasn’t had a recurrence yet, he doesn’t need to get any prostate cancer treatment at this moment. He can worry about his bones and heart.

●The “Gleason score" becomes less useful over time to measure the aggressiveness of your cancer; better are “Time to biochemical recurrence (BCR)” and “PSA doubling time” . As a pathologist, Dr.

bout his bones and heart. ●The “Gleason score" becomes less useful over time to measure the aggressiveness of your cancer; better are “Time to biochemical recurrence (BCR)” and “PSA doubling time” . As a pathologist, Dr. Morris respects the Gleason score as the measure of prostate cancer aggressiveness. The Gleason score is calculated at initial (core biopsy) diagnosis and at prostatectomy.

T he Decipher test, just recently FDA approved, and the CAPRA score improve slightly on the Gleason score. The Decipher test looks at the activity of 22 genes in prostate tumors and calculates a score from 0 to 1. The Cancer of the Prostate Risk Assessment (UCSF-CAPRA) test , with a 0 to 10 score, predicts an individual's likelihood of metastasis, cancer-specific mortality, and overall mortality.

The score is calculated using points assigned to: age at diagnosis, PSA at diagnosis, Gleason score of the biopsy, clinical stage and percent of biopsy cores involved with cancer.

However, as soon as you get to biochemical recurrence (BCR), Gleason is only one of many measures, and not the best, but the possibly the third best, after “Time to biochemical recurrence (BCR)”, and “PSA doubling time”. As you go further in your journey, your Gleason score means less and less, for many reasons.

“Treating My Osteoporosis and My Prostate Cancer” (Jeff Dwyer) [#65] ●In fact, metastatic prostate cancer is not even Gleason scored. For those PCL patients who have had a metastasis biopsied was the metastasis Gleason scored? ●What is Jeff’s “Time to BCR” and “PSA doubling time”?

To calculate Jeff’s PSA doubling time, he needs all of his PSA data points over time before his salvage proton radiotherapy for his first biochemical recurrence (BCR), and then all his PSA data points for his second BCR. However, for Jeff there is one huge caveat: almost all of the literature on PSA doubling time is calculated with PSA data points starting at 0.

2 and higher, but Jeff’s values are less than 0.2. So his PSA doubling time is not validated and imperfect, but still a worthwhile approximation. Was the first BCR PSA Doubling Time the same, more, or less than his second BCR PSA Doubling Time? Jeff’s Time to BCR of two years and eight months missed the low-risk category by only four months. ●What is the aggressiveness of Jeff’s cancer?

Jeff’s cancer seems like it is not highly aggressive, but more intermediate. Allen Morris believes Jeff is a good, not bad intermediate risk, which would correspond in Gleason language to Grade Group 2.5. ●What does this risk assessment mean for Jeff’s treatment? Jeff’s cancer’s intermediate aggressiveness assessment influences how aggressively he should be in treating his prostate cancer.

For example, if Jeff’s “Time to BCR” is greater than three years, and his PSA doubling time is greater than 15 months, he should do "active surveillance" of BCR, and focus on his heart and bone issues.