Prostate cancer poetry in motion: The Big C and the roads taken--or not
By Howard Wolinsky
Fourteen years ago, when I was diagnosed with vey low-risk prostate cancer, active surveillance was more or less a twinkle in the eye of its academic developers, including Drs. Laurence Klotz, Peter Carroll, Peter Albertsen, Freddie Hamdy, aH. Ballentine Carter, and other pioneers,
At that point, few patients had tried the close monitoring approach, and most urologists were reluctant to give it a spin, fearful that cancer would get aggressive and kill their patients.
In those days, patient like me diagnosed with a single core of 1 millimeter of Gleason 6 generally were handed a one-way ticket on the R.P. (Radical Prostatectomy) Express.
In fact, we didn’t think we had a choice. Our generation was always taught we should try to detect cancer early and treat it immediately. Take no prisoners,
Active Surveillance presented a hard-to-believe scenario: Close monitoring was just as safe as RP and radiation therapy—even though research consisteltly proved that,
But because I have a different toolset as a medical journalist, even before I was diagnosed and just had a rising PSA and was pushed my my nervous internist to get a biopsy, I started to explore alternatives to aggressive treatment in Chicago,
I read the science about active surveillance and concluded: Why take on the risk of potential impotence and incontinence when I could just have get signals of an early warning of aggressive disease with regular PSAs, MRIs, DREs, and biopsies? And why not take the chance that I’d never need treatment at all?
These days 60% of prostate cancer patient opt for AS in the United States--per the American Urological Association--a dramatic change from the 6% willing to get on the road less followed in 2010.
AS is the standard of care—though not always so honored by urologists and patients. 40% of U.S. patients still opt to be treated.
Experts today agree the AS rate is not as high as it could be for low-risk patients--like 90% and above in Sweden, United Kingdom, and the state of Michigan, where the MUSIC program has shown this can be accomplished even in a capitalistic system where surgeons are incentivized to do more and get paid more. U
Back in 2010, AS still felt like shooting craps--a gamble because many urologists were skeptical about AS, and even AS proponents were extra-cautious recommending annual or more frequent biopsies to get that early warning of aggressive cancers.
These days, the approach can be de-intensified if the patient’s cancer really has been shown to be “lame” or “wimpy” as my urologists repeatedly have described my “cancer.” In fact, my cancer has only been seen in one of six biopsies and one of two MRIs in 14 years. The odds seem to be in my favor.
Myu case is so de-intensified some sticklers woukld sau I am not actually on AS but on a modified version of the old “watchful waiting” approach. I call it AS lite, or passive aggressive surveillance,
I haven’t had a biopsy or MRI since 2016 and am followed with annual PHI (Prostate Health Index) blood tests that incorporates a regular PSA,
Back in 2010, I faced two roads and of course had no idea what the future held.
One urologist, I call him The Notorious Dr. R.P., was probably typical for the time. Even though he was young and trained at the University of Chicago, where the foundations for conservative management of lower-risk prostate cancer were laid out by my friend Dr. Gerald Chodak, R.P. told me I needed to be “cured” in his OR--the next week.
I asked him about AS--which surprised him and led him to announce he didn’t support “that modality.” (He does now, BTW.)
A second urologist, a urology professor at U. of C., Scott Eggener, said I could be “cured” in the OR, as Dr. R.P. maintained. But Eggener stressed that based on the research I didn’t need surgery. He called me the “poster boy for AS” and predicted my cancer would not grow in the next 10 years. He was right.
Now to the poetry portion of this blog.
So I faced the dilemma, which Robert Frost, poet laurate of Vermont and four-time Pulitzer Prize winner for Poetry, aptly captured in the poem “The Road Not Taken.”
He wrote:
“Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.”
(Robert Frost Also, “good fences make good neighbors.”)
Frost wrote the poem as a joke for a chronically indecisive friend, fellow poet Edward Thomas, with whom he often walked in the woods. Thomas often lamented that they had picked the wrong path for their walk. Frost was stunned that students found this poem about choosing a path in the wood was so meaningful.
I think this poem applies to all the many decisions we make in a lifetime—or at least mine.
In the end, I felt the road not travelled, AS, was the right path for me—though two doctors debated what was best for me. I took the more unknown path because I believed the science published by Dr. Laurence Klotz, Dr. Peter Carroll, Dr. Freddie Hamdy, and others.
I felt I would be safe whatever choice I made. So why not pick the less aggressive onbe with the fewest potnetial side effects?
You have to make your decision. Each of us is different.
And AS is not without potential rocks, vines, and brambles that can trip us up as we wander in the prostate cancer woods. So unlike Frost, I believed the road did not matter since I would die from something else anyway—except I could avoid those nasty side effects.
Many of us experience a psychological burden in that cancer forest that can lead to patients dropping out from AS after a few years even though their cancers have not become more aggressive. I haven’t experienced any of that.
My third urologist assured me—Zenlike: “If you had any less cancer, you wouldn’t have cancer at all.” Like Seinfeld, my show, thus far, has been about nothing.
AS also can pose financial toxicity--insurance discrimination and job discrimination. I experienced toxicity when I was denied term insurance by eight carriers when all I had was a minor Gleason 6. It wouldn’t have been a good idea—in my view—to undergo a prostatectomy to qualify for cheaper insurance rates.
Experts tell me that if I started the PCa clock today I probably would not have been diagnosed at all because of more effective use of MRIs and reduced rush to biopsies. Forget about woulda, coulda, shoulda. No regrets for me. I helped the next generation of AS patients get fewer biopsies. Pass it forward.
Poet Laureate of Prostate Cancer
Ifor Thomas, a hospital architect from Wales and a Gleason 7 patient, was a participant in the famed Prostate Testing for Cancer and Treatment (ProtecT) trial, which demonstrated the safety of active monitoring--an early version of AS-- compared with radical surgery and radiotherapy.
Ifor was in the surgical group in the trial and came out fine. Volunteers like him paved the way for patients like me and maybe you to follow a monitoring regime. Thanks for your service, Ifor and 1,600 fellow subjects.
As it happens, Ifor’s “night job” is as a performance poet. He wrote a 2005 book of poems “Body Beautful,” memorializing his experience as a participant in the ProtecT trial.
Ifor will be reading a poem as part of the special award for research to be presented by Active Surveillance Patients International (ASPI) to Drs. Freddie Hamdy, Jenny Donovan, and the rest of the Protect team and its subjects, including Ifor. (More on the awards soon. See below.)
TheActiveSurveillor has named Ifor as the first “poet laureate of prostate cancer.”
I have that power, BTW. Note: A poet laureate is a poet appointed by a government or organisation, who may be asked to compose poems by that appointing body.
Bill Manning, ASPI’s new executive director, and Mark Lichty, chair of ASPI, and I had a Zoom with Ifor, where he recited some of his work, He was stunned that we all had been on AS for at least 14 years, and Mark for nearly two decades. In a way, he helped pave the road not taken.
(Ifor Thomas, prostate poet laureate, with his book and his sherry.)
As an homage to the Poet Laureate of the UK, I rewarded Ifor with a bottle of sherry, a white wine from Spain.
Why sherry? The King of U.K. awards the title of Poet Laureate of the UK, which as compensation includes a “butt” (or barrel of 72 bottles) of sherry, the Spanish wine.
I have the power to commission a poem from our laureate. I asked Ifor to write a new poem for the upcoming ASPI ceremony for the ProtecT trial.
Ifor delivered. I was shocked--and appreciative--that Ifor dedicated his first work on prostate cancer in decades to me and the road increasingly taken. I awarded Ifor with 1/72nd of a butt of sherry as the first prostate cancer poet laureate.
Here’s the poem he dedicated to me—and my fellow AS patients. I am honored and blushing:
Active Surveillor
(for those who choose Active Surveillance to confront prostate cancer)
Not for me
the surgeon’s robotic knife
nor those burning rays -
my body stands strong, whole.
But I wait, I watch,
and if the worm should turn
I am ready. This is my life
and I will guard it all my days.
Thanks poets Ifor Thomas and Robert Frost for guidance and support.
The Active Surveillor YouTube channel: An interview with prostate cancer poet laureate Ifor Thomas.
Ifor Thomas performs poems from his book ‘Body Beautiful’ about his experience in a famous PCa study
More verse from prostate cancer’s Poet Laureate
Here is some of Ifor Thomas’ performance poetry that earned him the title as Poet Laureate of Prostate Cancer:
New questions
Sister Vivienne, Researcher,
shows me the medical illustration —
it's as foreign as a map of Glasgow or Leeds.
She tests my knowledge.
I know all this but not now.
This isn't my city.
I'm lost.
She tells me how difficult diagnosis is,
how imponderable treatment.
There are forms to sign,
questionnaires to complete,
consents and blood to be given.
Do I understand?
Will I participate?
We sit together alone in the
disused hospital. This was once
the A&E department.
I came here with my children,
their cuts and broken bones
were tended in a cubicle such as this.
I remember a nurse, his name was Mal
I puzzle over this theme park —
bladder like a boating lake,
the sweeping cycle path of the urethra
the country lane of the rectum
the race track of the penis
the car park of the prostate —
like all car parks, it's difficult to get to.
For a moment I am glad
that these things are foreign to me —
that I am not an expert,
that all this is unexplored territory.
When I am chemo-whacked
and zapped by X-rays
I will know these byways
like the IV-stabbed back of my hand,
will have conducted guided tours,
allowed visitors
memorabilia and takeaways.
Then my grey-skinned face
will nod the answers to her questions.
(I like this poem and its seasonal reference to “rust,” something any of uswho have had a biopsy will eciognize. H.W.)
Rust
In October the colour of my sperm
changed to rust.
In tune with the changing season
but frightening the shit
out of me and Gill as we lay,
post-coital, staring at the ceiling.
(The next poem is one of my favorites. The alliterative Cut, keep, or cook. A patient’s view of a randomized study, ProtecT. It’s humorous and brave view of prostate cancer surgery, with a mention of Academy Award-winner Robert De Niro’s surgery here in Chicago in 2003 that fixes the poem in time, and includes a descriotion of an adorned Aztec-warrorlike patient. H.W.)
Cut, keep or cook
They don't know what to do
About prostate cancer
So they leave it to you
To come up with the answer.
There's a computer, or formbook,
That will randomly choose
Whether to cut, keep or cook.
Heads they win, tails you lose.
Body Beautiful
I wear my jewellery —
A cannula on the back of each wrist.
My bodily adornments —
Wound drains, catheter.
My piercings —
A suture through the foreskin, staples.
My tattoo —
A six-inch scar.
In urology
I'm dressed to kill.
My funeral
I'm not so chipper now
back here for the post-op three-month check-up
with the grey-haired men clutching their wives
and papier mâché urine bottles.
The feedback from the GP's
blood test is not good.
Sister Vivienne is
putting a brave face on it.
Only this morning Robert De Niro
was thanking the world
for the success of his treatment —
Bob's kept me company.
Now he's out of the woods
and I'm in suite 18 contemplating
a PSA level that is too high and
rides on trolleys down corridors.
I'm already planning my funeral.
A pair of black stallions with plaited manes
will pull me Kray-like up Thornhill.
The rattle of those big wheels
will draw the crowds, children will see their faces
reflected in the lacquer of my casket.
There will be recordings of Bob Cobbing
and clips of De Niro saying you talking to me?
At the moment of cremation a butterfly will appear from
nowhere.
The congregation will be stunned into silence.
Someone will whisper — his nightmare is over now.
Everyone will hear and nod — yes, it could have been me
(but thank God it's him)
Two days later the phone rings —
been a mistake, samples mixed up.
I sigh, get onto the crem
tell them to cancel the arrangements
or at least
put them on hold.
Cut, keep or cook
They don't know what to do
About prostate cancer
So they leave it to you
To come up with the answer.
There's a computer, or formbook,
That will randomly choose
Whether to cut, keep or cook.
Heads they win, tails you lose.
Rust
In October the colour of my sperm
changed to rust.
In tune with the changing season
but frightening the shit
out of me and Gill as we lay,
post-coital, staring at the ceiling.
Thanks, Ifor Thomas, Poet Laureate of Prostate Cancer.
Another sherry?
In my opinion? Don’t miss this ASPI webinar on July 27
By Howard Wolinsky
Active Surveillance Patients International (ASPI) is holding a webinar at noon EST on July 27 on the importance of second opinions.
The program is entitled “In our opinion, get a second opinion.” That’s my opinion, too, as a Super Surveillor.
Four patients will share their experiences with prostate cancer and how second opinions—or their absence—had a huge impact on a patient’s fate.
I will be on the panel along with my Chicago area friends, retired attorney Jim Schraidt, a former ASPI board member and current ZERO board member, who like me was diagnosed in 2010 but went on a different path that transformed him into patient advocate supreme, and fast-rising commodities traders and newly diagnosed PCa patients Charles Brown III and Keith Day, whose second opinions saved them from the robo knife and the ray gun.
Register here: https://zoom.us/meeting/register/tJUkdOqpqT0iGNHcOP4sfLoiIsdIp-nLwbUS
The Active Surveillor’s Second Opinions Rules
—Your records such pathology reports and MRIs belong to you. You can send them to other experts for second opinions. Don’t let staffers in an MD or hospital office keep them from you.
—Don’t worry about hurting the feelings of your doctor by seeking second opinions. Doctors should be used to this. You the patient are monarch. If the doctor has a thin skin about this, he or she needs to toughen up.
—Seek second opinions if you are uncomfortable with the initial results, For example, you have a high PSA and a low PI-RADS, or vice versa, check it out.
—Seek second opinions if you have low- or favorable-intermediate risk prostate cancer and your urologist only offers you a radical surgery or radiation.
—Don’t be bashful. Get a third or fourth opinion if you feel it’s necessary. But check with your insurer and Medicare. You don’t want to get stuck with a bill. They most likely will be OK with this.
—Get your second opinions from experts at centers of excellence who subspecialize in uro-pathology or abdominal radiology. These diagnsoses are not always a slam-dunk and can require finesse and expertise.
Can you share more Second Opinion rules or do you want to share your experiences with seeking second opinions? Share at pros8canswers@gmail.com.
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Paid subscription update.
I have now reached the equivalent of just over 30 new paid subscriptions. I say equivalent because a few people have given me $150-$200. Thanks to all.
I am 70-90 short of my goal.
I hate to be a nag. Please step up, and I promise to stop asking.
Also, if you don’t have the cash, no worries. I’m just trying to break even. If you don’t want to pay, or can’t, you’re always welcome on Survivor Island-Prostate Cancer. Please, don’t quit me.