Between early signs and diagnosis--the next stop: The Twilight Zone
By Howard Wolinsky
I call it the “twilight zone,” the time between the first sign that we may have prostate cancer and actual diagnosis, moving from uncertainty to certainty.
I, of course, am borrowing from Rod Serling and his TV show, “The Twilight Zone,” which he introduced by saying: “There is a fifth dimension, beyond that which is known to man. It is a dimension as vast as space and as timeless as infinity.”
The prostate cancer twilight zone has been the most difficult time in my 12-year prostate cancer journey. How about you?
I spent June through December 2010 in a type of limbo, that fifth dimension. I had a PSA (prostate-specific antigen) level of 3.95 ng/dL—just below the grey zone of 4-10— and an ambiguous biopsy reading. It was a waiting game for the next shoe to drop.
Jonathan Epstein, MD, the prostate pathology guru from Johns Hopkins, spotted a HGPIN (High-grade prostatic intraepithelial neoplasia,) which was considered a precursor to prostate cancer.
Epstein recommended I come back in six months and undergo a second biopsy.
I felt as though I was doing time in a PSA-biopsy prison.
When I wasn’t ignoring the possibility that cancer was lurking in my prostate, I was doing research on my next steps should I get bad news.
As a medical reporter on the Chicago Sun-Times, at least I knew what a prostate was.
But most of the time, I was shut down, ignoring any emotions and worry.
There was no support group for twilighters like me, and there still isn’t.
The closest we can come is support groups for active surveillance, a movement which I helped start in 2017-2019.
(I wouldn’t meet another patient on AS until 2017, seven years after I was diagnosed. All of the men I knew who had been diagnosed, even with low-risk disease, underwent prostatectomies and were coping with incontinence and impotence.)
Through a friend, I learned there was a budding active surveillance program run by Scott Eggener, MD, at the University of Chicago. If I was found to have low-risk prostate, I planned to check it out.
My research showed I likely had low-risk disease and potentially could live the rest of my life WITH cancer and wouldn’t die FROM it. The Grim Reaper had other things in store for me.
(At this point, I was 63. Despite being in excellent health and following a heart-friendly diet, I had experienced a STEMI, known as a widowmaker heart attack. I should have died. But more than 30 years of exercise paid off with backup blood circulation that rescued me. Virtually no heart damage.
(So my cardiologist, bless his heart, told me I, like him, would most likely die from heart disease.)
In any case, I lived with the prospect of a serious cancer diagnosis over my head for six months.
Once I was finally diagnosed with low-risk prostate in December, I knew what to do and have had no real anxiety or worries about cancer in 12 years. I know I am lucky though I had some scares in the ensuing years as my PSA rose as high as early 9 and the leveled off under 5.
Not everyone is so lucky.
Jim Early, MD, gives a different perspective on that twilight zone waiting period from a rising PSA and an actual diagnosis in an essay in ProstateCancer.net, “A Surprise Prostate Cancer Diagnosis.”
He says his prostate journey started when he was 6 years old when his grandfather died from prostate cancer. And then, at age 50, a bump was found in his prostate along with a PSA of 4.
He describes the twilight zone: “This period of waiting and uncertainty felt like being stuck in purgatory. As I have learned from patients and friends, the longer it takes to move along the road from suspicion to diagnosis and treatment, the more of an emotional toll it takes.”
Early advises his medical colleagues to provide some strategies to reduce anxiety, such as “try to move the process forward as fast as possible for your patients. The longer between appointments and tests, the more time spent in the anxiety of uncertainty. Many, if not most, patients do better when they get their diagnosis and can plan their lives based on the results.”
I couldn’t agree more. Waiting, albeit sometimes unavoidable, and uncertainty can make you anxious.
My friend Jeff Coleman, who is on AS, shares his time in the twilight zone:
“Rod Serling also stated that the Twilight Zone "lies between the pit of man's fears and the summit of his knowledge"....always loved that line and seems appropriate to this subject.
“My own time in the Twilight Zone wasn't too long. From my initial urologist visit, through the MRI and biopsy and then being placed on AS was about 3 months. But it did indeed incorporate one ‘man's (mine) fears’ and the ‘summit of his (my urologist’s) knowledge.
“I did bum a cigarette from Rod while I was there...don't tell my doctor!”
I’ve heard over and over about the delays patients face in seeing a urologist when they need one most. There’s got to be a better way.
Maybe we should establish support groups for patients in the twilight zone to prepare them for what’s ahead. Or will that create more anxiety?
A group of us from Active Surveillance Patients International, AnCan’s support group for AS, the Nationwide AS support group from Canada, and TheActiveSurveillor.com have formed a coalition to plan a series of educational programs called Active Surveillance 101.
AS 101 is aimed at those patients in this twilight zone.
More details to come.
(William Li, MD)
From Active Surveillance Patients International:
Free Zoom Webinar on Foods That Fight Prostate Cancer
A Webinar For Every Man and People Who Love Them
What: Free Zoom webinar
When: July 30, 2022, noon -1:30pm Eastern. Live with Q&A
Title: “Eat To Beat Prostate Cancer”
Speaker: William Li, MD.
Dr. William Li is a highly regarded cancer and nutrition specialist. Li’s TED
talk on Eat To Starve Cancer has had over 11 million views.
Li’s NY Times best-selling book is titled “Eat To Beat Disease—The New Science on How Your Body Can Heal Itself” and features foods that fight all forms of cancer.
Li, founder and medical director of the Angiogenesis Foundation, is the author of more than 100 published scientific articles and studies. His book is endorsed by Mark Hyman, MD and Dean Ornish, MD.
Li has many YOUTUBE videos addressing groups on the topic of food as medicine.
Find out which foods Li says can suppress prostate cancer stem cells. This is a free open to the general public members of the medical and healthcare community.
Attendees will receive a list of free prostate healthy recipes.
ASPI is the principal host of this free event. ASPI is a non-profit that supports
prostate patients in addressing the complex issues facing prostate cancer patients.
Invited: General public
Free Registration: www.aspatients.org or go direct to: https://bit.ly/3t5lFLx
Free prostate-healthy recipes for all registrants.
Moderator: David King Keller, PhD, prostate cancer patient, author, inventor.
More info: info@aspatients.org; or DrDavidKingKeller@gmail.com
Rod Serling also stated that the Twilight Zone "lies between the pit of man's fears and the summit of his knowledge"....always loved that line and seems appropriate to this subject.
My own time in the Twilight Zone wasn't too long. From my initial urologist visit, through the MRI and biopsy and then being place on AS was about 3 months. But it did indeed incorporate one "man's (mine) fears" and the "summit of his (my urologists) knowledge".
I did bum a cigarette from Rod while I was there...don't tell my doctor!!
Excellent and essential item. I began doing a comment and was up to how I was led to get 2 consults after my urologist's diagnosis when I lost everything I was writing, and I'm just not up to re-starting now.
But the key thing, I think, is the need for starting a person's education about prostate cancer in the primary care physician's office where one usually first finds out that he has crossed the (then) magic 4.0 PSA line. And maybe this can start most easily if one gets an information piece from the lab that does the PSA analysis which explains PSA, the 4.0 line (or what for some is now a 10.0 line, or whatever), and an outline of how to proceed and the options that one may face and a list of contacts for info (e.g. USTOO, which seemed to be the one when I was first diagnosed, etc.).
Keep on this track, please.