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by Bruce Linde   |   January 2, 2019

Don’t Feel That Side: A Totally Subjective Tale of Living With Prostate Cancer

Seriously?

In late 2015 my dog was diagnosed with liver failure, my band fell apart, my girlfriend and I split up, and my urologist was doing a DRE (at least he was wearing a glove) when he said, “It feels funny on this side.” I replied, “Don’t feel that side.” The resulting biopsy confirmed I had prostate cancer.

I found my way to a support group where the first guy to speak said, “Well, they’ve got my PSA down from 225 to about 100 but the cancer’s in my bones,” the second guy said he had total incontinence and was going through seven diapers a day, and the third guy said he carries a piece of paper that says ‘April 2020’ on it because that’s the median date based on how long the doctors told him he had. Three years later, my prostate is gone, my PSA is undetectable, and I’m the facilitator of the support group.

They Mean Well

Getting diagnosed with PCa is like having your car break down and having to pull over to the side of the road while everyone else continues on their way. Friends will commiserate and try to help. “Oh, you have prostate cancer? You need to talk to my friend, Joe… he had it ten years ago.” The problem is not just that I play tennis 4-5 times a week and Joe is a 350lb chain-smoking diabetic old enough to be my father, or even the ten years of medical advances in treating the disease. The only thing Joe and I really have in common with regards to PCa is… PCa. Still, that commonality does make a difference.

It Takes A Village

The motto of our support group (prostatecanceroakland.org) is, “You are not alone on Planet PCa.” The group always has a few deer in the headlights who just got diagnosed and are struggling to come up to speed with biopsies, MRIs, Gleason scores, PSMA tests, ADT, whatever. We’ve got guys who swear by the procedure they chose for themselves and are true believers based on their results… and guys who weren’t so lucky. We’ve got guys facing end-stage PCa, and guys who come to the group to announce that they had PCa years ago with zero side effects. We’ve got guys who love challenges and lean into the coming battle, and guys who were overwhelmed even before they got diagnosed. And, we’ve got guys experiencing recurrences as their PSAs have started climbing again after they had relaxed into post-treatment undetectability. What unites and ties us together is knowing that each and every guy sitting around the table is also traveling the PCa highway. We may all be having different experiences, but it’s a peer discussion group for those living with Prostate Cancer. There’s always something to share and something to learn… and that’s on top of knowing you’re not alone with a disease that does its best to make you feel alone.

Paying It Forward

In late 2018, I represented my support group and the organizations behind it (Summit Hospital and UsTOO) as I participated on a Department of Defense panel reviewing applications for PCa research funding… as a ‘Prostate Cancer Consumer Reviewer’. For the record, I would rather be called a PCa ‘veteran’ than ‘consumer’ but the DoD can call me whatever they want since they put about $100m yearly into PCa research. Each of the panels meeting during our session had a consumer reviewer or two and a bunch of scientists, reviewing and scoring proposals based on science, innovation, and potential impact; we consumer reviewers were there to speak about the potential impact of each application. Our scores and feedback get passed on to the ‘programmatic review’ panels who select the proposals that get funded. Similar panels are run year-round for all kinds of issues affecting military (and other) personnel: Pancreatic Cancer, Agent Orange, Breast Cancer, Tick-borne Diseases, etc. It was a huge honor and a way to help make a difference.

So What Now?

PCa side effects tend to get personal pretty quickly but there are meds, exercises, and even mechanical options. The important thing (as the former facilitator of our group still counsels) is to ‘kick the can down the road’ and then worry about the small stuff.

I’ve kicked my can down the road and am doing well with an undetectable PSA, a dog who’s responded to his own meds, and the band is back together. Of course, there’s that little urine-leakage-during-sex problem (Climacturia affects between 20-40% of men who’ve had prostatectomies) but since it’s just me and the dog… kidding!

Seriously, PCa is not fun. Permanent changes to your plumbing can be less than pleasant and difficult to talk about. Fortunately, you don’t have to go it alone. If you’ve been diagnosed or are living with prostate cancer find the closest PCa support group and avail yourself of the camaraderie and assistance you will find there. You are not alone on Planet PCa.