People Magazine exec editor comes out of the Active Surveillance 'closet'
Editor Jeremy Helligar : 'I Just Came Out as Someone Who Is Living with Cancer'
By Howard Wolinsky
High-profile People Magazine Executive Editor Jeremy Helligar came out of the ”AS closet” in Facebook and in People, announcing this week that he is on AS for low-risk Gleason 6 prostate cancer.
This is a breakthrough for Active Surveillance, a cancer management strategy avoiding side effects of aggressive therapies that has been gaining momentum in recent years.
High-profile people such as actor Robert De Niro and the late Secretary of State Gen. Colin Powell have gone public with the fact that they were treated for prostate cancer or had aggressive prostate cancer. (Read my essay on celebs and prostate cancer: https://www.medpagetoday.com/special-reports/apatientsjourney/82226)
But high-profile people with low-risk cancer have generally kept their own counsel, fearful that public exposure could lead to job discrimination and damage to their public images. Helligar showed courage here, as he did 30 years ago outing himself as a gay man.
(Jeremy Helligar, People Magazine.)
Helligar reported his journey began with his diagnosis on April 5. He has just—after careful consideration—gone public in hopes of helping others. He said it was the most “frightening” thing he has done in 2023.
This is a double victory for AS since Helligar also is a Black man. In the Black community, many consider AS as “experimental” and “not for us.” The Black community has justified trust issues with the medical community, especially researchers since there is a legacy of mistreatment and abuse of Blacks by medical researchers dating back to the days of enslavement.
Read Helligar’s first-person essay here: https://people.com/i-just-came-out-as-someone-who-is-living-with-cancer-jeremy-helligar-8405547 It is instructive for men and their partners, no matter their ethnicity.
(For more on the history of Blacks and AS, read my essay, “Black Men, 'PSA Prison,' and the Tuskegee Legacy—Overcoming the stigma of prostate cancer” https://www.medpagetoday.com/hematologyoncology/prostatecancer/91283)
Patients on AS low-risk prostate cancer long have been orphans in the world of prostate cancer. We received a small share of research funding. It seemed that all high-profile people who discussed their prostate cancers had undergone radical prostatectomies.
Recently, Colin McFarlane, the British actor who appeared as the police commissioner in the “Dark Knight” Batman movies, shattered the mold, stepping up for Black men to be on AS like other low-risk patients.
(He shared his AS story this summer with TheActiveSurveillor.com: https://howardwolinsky.substack.com/p/colin-mcfarlane-british-actor-of)
What happened to Helligar will resonate for many of us who have gone through this diagnosis and decision-making process. Many low-risk prostate cancer patients keep their diagnosis to themselves, fearful that the cancer label will lead to job discrimination and other stigmas.
Like many of us, Helligar encountered a urologist who tried to scare him into being treated immediately. He ultimately opted for AS.
Helligar wrote: “To recap, on April 5, 2023, I was told I have prostate cancer. I must admit, the news didn’t floor me. It came after months of appointments with my urologist, multiple PSA tests, and, finally, a very uncomfortable biopsy.”
He eloquently described the same reluctance about and disdain for biopsies that many of us experience: “In my entire adult life, I have never felt as vulnerable as I did lying there in the fetal position waiting to be injected 12 times by a scary-looking needle. My urologist and his assistant tried to distract me from the physical and emotional discomfort during the procedure with mindless small talk, but it remains the darkest hour of this journey by far, so far.”
Before going public, he cautiously shared the diagnosis with his inner circle: “First, I told my husband, then the rest of my family, and then my best friend. I slowly opened up to a small circle of friends and colleagues, including my boss, who was incredibly supportive, as were the four other co-workers in whom I confided. One of them told me about his own experience with cancer, which provided one of the biggest boosts anyone gave me over the course of those first six months. He made me feel less alone at work.”
Helligar freaked out when he was diagnosed.
He wrote: “My doctor remained calm and told me not to overthink it. Didn’t he realize he was dealing with an extreme, hopeless hypochondriac? Of course, I was going to overthink it. I overthink everything, from punctuation to cancer diagnoses.”
He was a bit put off when his urologist his “cancer was low-grade and slow-moving — so much so that they call it ‘not cancer’ — recommended an MRI to determine if there were higher-grade cancer cells in my prostate or if it had metastasized to other parts of my body.”
Everything checked out. He sought a second opinion, which he described as “a must.”
It also was not a good experience: “My appointment with the second urologist was probably my worst doctor’s appointment ever. He made it sound as if I was a walking timebomb. If I didn’t have a life-changing prostatectomy as soon as possible, he insisted, I would be putting my life at risk. He delivered this frightening recommendation as if we were on a football field with 10 seconds left on the clock. Suddenly, I was 9 years old again, and my PE teacher was shouting at me to get over the wall on the obstacle course.”
Sound familiar? Many of us have had similar experiences with doctors trying to scare us into unnecessary and aggressive treatment with serious potential side effects, such as erectile dysfunction and incontinence.
Helligar told off “Dr. Feelbad. It was quite the showdown, during which he had the nerve to tell me to “educate myself.” (Later, when I returned to my regular urologist, he told me he had received a call from Dr. Feelbad, who said I had ‘scared him.’) I felt like Dorothy Zbornak in The Golden Girls two-parter called ‘Sick and Tired.’ As I left Dr. Feelbad’s office, seething, I wondered if he would have spoken to me in such a condescending and dismissive way, telling me to educate myself, if I were White.”
Helligar sought a third opinion from a doctor, who recommended AS. He ultimately went back to the first doctor, who was more convenient, and joined a local support group.
He said: “I told a few of my good friends who I knew had gone through their own experiences with cancer. One of them said it’s a ‘shitty club to be part of,’ and while I agreed at the time, I’m not so sure I agree now. If I had my choice, I probably would have joined a book club instead (and if you know me, you know that is something I would never ever willingly do), but I’ve had time to accept that I’m on a lifelong journey that will forever change me, hopefully for the better.”
I sent Helligar a message to congratulate him for coming out of the AS closet and welcome him to the AS community and hope he will help others by continuing to speak out.
His decision to come out of the low-risk prostate cancer closet could give a boost to AS, informing his many readers about this often-dismissed strategy of managing lower-risk prostate cancer with close follow-up with PSA tests, MRI scans, and biopsies.
Helligar has a big megaphone so word of his decision to go on AS may give this movement a boost.
AS has made major gains since I was diagnosed in December 2010, when only 6% of us went on AS. But thanks to support of a new generation of urologists and patient power, 60% of patients with low-risk cancer opt for AS. That’s still below the 90%-plus it should be.
Helligar wrote: “Maybe going public will render me less employable in the future. Maybe people will feel uncomfortable around me or not know what to say to me other than ‘You got this’ platitudes. I hope that isn’t the case. I already feel a sense of relief. I feel lighter than I have since April 5. Ultimately, it doesn’t really matter how the world sees me now in regard to my health. I’ve ceded control over that.”
AS finally is coming out of the closet with champions like Helligar and McFarlane to help the public understand that men can live safely with low-risk prostate cancer.
Happy Thanksgiving.
Prostate Cancer UK webinar on AS for newbies with a dash of Stoicism
By Howard Wolinsky
The idea of living with low-risk prostate cancer is a hard one to accept in a world where we were conditioned to excise all cancers STAT.
Prostate Cancer UK, a British support organization held a webinar earlier this week, “An introduction to Active Surveillance,” aimed at giving the facts of AS (Active Surveillance, or close monitoring) to newly diagnosed prostate cancer patients, who are weighing their options between AS and aggressive treatment and those who have recently gone on an AS protocol.
Watch the program here. It’s aimed at newbies but veterans will find it useful to brush up on this AS thing.
Hugh, a very knowledgeable patient on AS and a friend of TheActiveSurveillor.com, shares some tips on la vida AS loca—including diet (such as cutting out eggs and dairy and consuming oily fish and eating dark chocolate), drinking a glass of wine every day; daily walks and resistance exercise; emphasizing sleep and meditation.
Hugh said that the longer he’s been on AS, the more comfortable he’s become, largely because he has become more educated.
He feels “quite lucky” to be on the AS protocol.
Consider the alternatives.
He said he is reassured that through surveillance he has, as footballers say, “a foot on the ball,” and if his cancer progresses, he can quickly undergo effective treatment.
Some nurses specializing in AS joined in the program.
Meg Burgess, a nurse specialist at PC UK, stressed that AS is not actually “doing nothing,” but entails active monitoring. She shared UK guidelines on AS from NICE (National Institute for Health and Care Excellence). the national policy-setting body, serving the National Health Service:
She stressed that AS is different from “watchful waiting.”
Hugh follows a Stoic philosophy, which asks: “What’s the worst that can happen?” He visualizes “whatever it is that is growing inside me”—he prefers not to call it cancer—is healing every day.
In fact, when Hugh, whose father died from prostate cancer, was first diagnosed five years ago, he had three cores of Gleason 6 (Grade Group 1). (One initially was classified at Gleason 3+4=7, but that one was downgraded.)
His latest biopsy this year found a single core of less than 1 mm. of Gleason 6.
Hugh projects a dash of the British stiff upper lip, displaying fortitude and stoicism in the face of adversity.
(Another AS patient recommended a book I am reading: “The Daily Stoic: 366 Meditations on Wisdom, Perseverance, and the Art of Living” by Ryan Holiday and Stephen Hanselman.)
PC UK also offers loads of useful tools on AS, including a fact sheet, a diary to track your test results, information on understanding your test results, etc.: search at https://prostatecanceruk.org/
Hugh is a co-moderator of the excellent AS online chat group hosted by PC UK. The group meets monthly on the second Tuesday of the month from 2-3 pm. Eastern US. Join the chat
Hugh, a subscriber to this newsletter, recommended that attendees watch a YouTube video by Dr. Laurence Klotz, one of the “godfathers” of AS, which he found reassuring. He also recommended the videos at the Active Surveillance Patients International website: ASpatients.org.
I covered the 2022 Klotz program for the Active Surveillor.com:
Also, note: for newbies and those who want to review: A group of AS-oriented organizations, including TheActiveSurveillor.com, put together a series of videos in which a prostate cancer patient and his spouse interview leading experts on AS.
Get some popcorn (seasoned with nutritional yeast, of course, for a cheesy flavor) and watch the videos here: https://aspatients.org/a-s-101/
Sound off about AS @ ASPI session this Saturday
Join Active Surveillance Patients International for an open discussion on what’s on your mind about Active Surveillance at noon Eastern today, Saturday, Nov. 25.
Register here: https://zoom.us/meeting/register/tJ0vcOmgqTgqGddv2Wx1C1iw7icnQ-71mYEn#/registration
Reminder: Survey focuses on how the prostate cancer impacts partners
By Howard Wolinsky
Prostate cancer is a couple’s disease.
Whatever your diagnosis—from very low-risk to very high-risk—your spouse, partner, significant other, etc. is impacted. In the case of Active Surveillance, your partner’s perspective can make or break the decision to be surveilled vs. treated.
EU-ProPer partners’ study
Antwerp-based Europa Uoma, a European advocacy organization for men with prostate cancer and their partners, representing 26 national patients’ groups, has done excellent research surveying men with prostate cancer. Now they are conducting an anonymous survey in Europe and beyond to learn about the experiences of partners of men with prostate cancer and the physical and psychological burdens the disease imposes on them.
Europa Uomo Chairman Guenther Carl said that the study builds on the knowledge gained from previous Europa Uomo studies about patients’ quality of life after treatment (the EUPROMS studies).
“Our EUPROMS surveys have gone some way to identify the burden of prostate cancer on the daily lives of affected men,” he said. “But we also know from our own experience that the effect on partners and caregivers can be considerable. If we can find out what would really help partners, it could have a significant impact on the type of support provided after diagnosis.”
He said the survey will help define unmet needs and provide an agenda for action.
The study, named EU-PROPER (Europa Uomo Prostate Cancer Partners in Europe Research), is available online in 17 languages. Pick your favorite.
So far, 600 partners have responded. But 1,000 are needed by year’s end.
So ask your partner to go to euproper.org to complete the survey.