The Big C: Why me? Why you? Why not? Existential questions in Prostate Cancer-land

By Howard Wolinsky

Why me?

When you were diagnosed with prostate cancer—even the low-risk kind—you likely asked that question,

Was it something I ate or didn’t eat? Was it my genetic inheritance? Did I not exercise enough?

Was it an environmental exposure like Agent Orange from Nam or any of those class-action lawsuits for which they are recruiting plaintiffs during the TV news?

Why me? A plaintiffs’ cry, a plaintive cry.

You weren't the first to ask these questions. You won’t be the last.

But there was a twist to the question for some women in the Chicago suburbs who started a support group for women with breast cancer.

Breast cancer patient Mimi Kaplan was a pioneer in patient support.

Back in 1978, Kaplan and a band of women with breast cancer in Chicago’s southern suburbs started the “Y-Me? Breast Cancer Support Group” to help women navigate the emotional struggles of this diagnosis.

At its peak, Y-Me? ran the only multilingual, 24-hour breast cancer hotline in the country, staffed entirely by trained volunteers who were also survivors. The first phone lines were in the homes of Kaplan and her friend Ann Marcou, who died in 2004.

This group inspired me to write a front-page series of articles for the Chicago Sun-Times about breast cancer, its deadly impact, research about it, and of course, support.

I had a bit of a personal mission. My mother, Edith, had died in 1988 at age 66 from both colon and breast cancer with liver metastases. So I had skin, so to speak, in the game. I had no clue, of course, that I would be diagnosed with noninherited prostate cancer 20 years later.

Y-Me?, which went bankrupt, left a mark on many of us.

The late Dr. Gerald Chodak, the renowned University of Chicago prostate cancer researcher, considered the grandfather of Active Surveillance, knew a good program when he saw one.

He witnessed the success of Y-Me? and answered with the creation in 1990 of UsTOO International, a network of over 200 support groups, which merged in 2021 with ZERO—The End of Prostate Cancer.

[As a friend, Chodak guided me after my prostate cancer. (PCa )diagnosis in 2010. Then, I recruited him to be the first medical advisor to Active Surveillance Patients International, the first global and support group for men with low-risk prostate cancer. ASPI, which I co-founded in 2017, presents an award in the late Dr. Chodak’s honor.]

Mark Lichty and I from ASPI and Rick Davis and Peter Kafka from AnCan Foundation in 2019 launched one of the first North American support groups aimed at men on AS. It went from monthly to four times a month very quickly.

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Cancer can be deadly, and the mere thought that we have been diagnosed can frighten us down to our marrow.

And in the case of Active Surveillance for lower-risk prostate cancer [Gleason Grade Group 1 and 2], we’re challenged to learn to co-exist with a cancer that our instincts tell us to destroy while we can. AS can be an emotional challenge even though low-risk is unlikely to kill us.

And so again, we ask, Why me?

I don’t recall asking myself that question.

I didn’t ask it when I nearly died at age 57 in 2005 from a so-called “widowmaker” heart attack. I didn’t ask it when I was diagnosed with Gleason 6 prostate cancer in 2010.

Maybe I am not self-reflective enough. Maybe I am naturally action-oriented and confront problems I encounter. Why knows? But I had no time for Why me? questions.

Why me? may be the first question you have while leaving the office of the urologist who gave you this bad news. But it’s quicksand from which you can't be extracted without a change in your 'tude and maybe with help from supporters with strong backs and serious experience with the same condition, who can help pull you out of the muck.

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My low-risk prostate cancer diagnosis, in a strange way, has been a gift. I know others who feel the same way.

When I was diagnosed with prostate cancer, I was outraged more than once by the system that led to too many men being treated and damaged with impotence and incontinence. I was pissed when a urologist, who in jest I call the Notorious Dr. R.P., tried to talk me into surgery I didn’t need.

I funneled my anger into a column I have written since 2017 for MedPage Today, “A Patient’s Journey.”

In STAT, I described why I considered AS “a gift that keeps on giving” since I avoided surgery and its side effects.

These diagnoses can be a gift, a wake-up call, and a chance at a second chance to change our lives by improving our lifestyles through diet, exercise, and other good habits.

It’s also an opportunity to help others going through this diagnosis.

I never saw myself attending, let alone creating support groups or advocating for patients and funding for research. As an old-fashioned journalist, I was trained to be objective and never to get involved as a writer in the things that affected me personally.

But the internet changed journalism—in some ways for the better.

The “I” word, once limited to use by columnists, was no longer verboten, when appropriate, for beat reporters.

To my surprise, I ended up a journalist-patient activist-advocate. I was getting hyphenated in ways I never imagined. I helped start support groups and also this Substack newsletter.

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I have met so many of you around the world that I never would have known otherwise—thanks to our common diagnosis and common cause.

My friend Mark Lichty, co-founder of Active Surveillance Patients International who has been on AS for nearly two decades, just weeks ago had a stroke, which has impacted his vision. He is finding his way in uncharted territory. His PCa experience ought to help.

Like me, he doesn’t buy into Why me? “I did not think that way with PCa or with the stroke,” he said.

He, too, insists that PCa has been a gift that introduced him to caring people he never would have been acquainted with otherwise. “The stroke’s gift is more elusive, but I will find it. Namaste,” he said.

Another friend, Phil Segal, a long-time AS patient from Toronto and co-moderator of the Active Surveillance Nationwide Support Group from Prostate Cancer Support Canada, also didn’t fall into the Why me? rabbit hole.

“I never thought why me but just dove in to find out what I could do about it,” he said. “As with you, [the diagnosis] opened new paths and many new people I really enjoy being with.”

Phil was in “a pensive mood” over the recent death of a close friend from a stroke. He shared with me and Mark this Art of Oncology essay from the Journal of Clinical Oncology, written by an Israeli palliative care doctor, Simon Wein.

Dr. Wein comes from the long Judaic tradition of asking questions. and answering questions with more questions.

He writes: “‘Why me?’ A question is an opportunity. It is also an invitation and a revelation.

“A question by its nature reveals something about the asker. When a patient or family member asks the doctor a question, the challenge for the doctor is to follow up the question diagnostically, then therapeutically, be the therapy medication or talking. Some questions appear mechanical, such as ‘Will I be able to drive again?’ while others are more obviously self-reflective, such as ‘Why did I get sick?’ However, even the most mechanically minded question may be fraught with emotional significance.

“Patients who ask the existential question ‘Why me?’ can be challenged to reflect on themselves. ‘Why not you?’ is a probing question that, with skill and some luck, may enable a measure of acceptance: ‘Indeed, why not me.’”

And I’ll add that in my view, we likely never will find an answer to Why me? I recommend we accept our fate and do what we can to improve our lot and find ways to help others.

What do you think about Why me? question? Have you figured out the why for yourself? Let us know in the comment bubble.

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Dr. Morgan in AnCan webinar on DNA and PCa

By Howard Wolinsky

Talking about questions. I have another one for you.

If you haven’t already, why not sign up for the AnCan webinar at 8 p.m. Eastern July 31 featuring Dr. Todd Morgan, the prostate cancer genetics guru from the University of Michigan?

To register for the program entitled “How and why PCa genomic tests work ... What's Inside the Black Box?", go to: https://tinyurl.com/ancanpcagenwebinar

The program is aimed at the full spectrum of patients with prostate cancer, from low-risk to high-risk.

Morgan will cover the difference between inherited and somatic testing, who should undergo genomic testing, and his randomized trial comparing the leading genomic tests, Decipher, Prolaris, and Oncotype DX. 

If you have some questions for Dr. Morgan, write to Joe Gallo at joeg@AnCan.org

Can’t make it? No worries. Just register, and we’ll send you a link to the webinar.