Keeping "The Big C" secret
Our Prostate Cancer Journeys: 'Mr. Westerman' tells all--but his name
(Editor’s note: Some men with prostate cancer keep their cancers secret. Attorney ‘Mr. Westerman’ explains why he keeps his own counsel. I told him I have been running a survey about keeping cancer secret. I see that about 25% who kept their diagnosis private have regretted that they did. Here’s what he said:
“I am ambivalent. I regret that I had not made full disclosure with my immediate family. I do not regret keeping it secret from the public, friends, and co-workers. It is a real pleasure to have the ability to control when I want to immerse myself in prostate cancer - no one ever asks me how I am doing : - ) and I know my interaction with others is not influenced either positively or negatively by my medical condition. His story:)
By Frank Westerman
My name is not Frank Westerman.
Frank does not actually exist. However, I chose to use Frank's name as my alter ego to remain anonymous in the PCa world to participate in PCa discussions, conferences, and blogs, while at the same time keeping the fact that I was diagnosed with prostate cancer a secret from my family, friends, and co-workers.
In March 2008, I was in excellent health but I started having prostate symptoms at age 51 (frequent urination, sharp pains in the pelvic region) and my first PSA was 135.6. I was never a candidate for AS.
I had a radical prostatectomy in 2008 ( pT3bNOMX, GS 4 + 3 with TG 5, or 4 + 5, depending upon who read the slides), followed by PSA persistence, salvage RT in 2009, two NIH clinical trials, a BLPLND in 2013 (GS 4 + 4), and intermittent ADT, using 50 mg., 100 mg., and 150 mg. bicalutamide, lupron, relugolix, and apalutamide, all as monotherapy.
My current PSA is 44.2 with metastatic disease in non-regional lymph nodes. I have been M1aHSPC since 2009 with no material progression for more than 13 years.
When I was first diagnosed in 2008, my wife and I decided not to tell our children (who at the time were 16 and 13 years of age), on the off chance that I would be cured or, if not, I could state that it was not a life-threatening situation.
I knew, however, that neither would be true, but it was much easier emotionally to say nothing to the children rather than to discuss it openly, despite my complete understanding that a psychologist or psychiatrist would unequivocally encourage full disclosure and honest communication with one's children.
Following that decision, I certainly could not tell any of my other relatives, friends, or professional co-workers about the diagnosis because my children should be the first to know.
Fortunately, I was an attorney in solo practice and I had tremendous flexibility in my schedule. I did not need to ask anyone for permission to attend medical appointments or to take time off to receive treatments.
My radical prostatectomy was explained as a hernia operation.
My radiation treatments were scheduled during regular office hours, my BLPLND at Mayo was explained as a summer vacation in Minnesota; my visits to the NIH in Bethesda were business meetings, and my drugs were vitamins and supplements. I believed, as far as my family was concerned, that they were better off not knowing about my cancer so they could make their life decisions without regard to my situation.
Professionally, I did not want to be rewarded or discredited either in whole or in part on the basis of a disease that I had. If I were appointed to a committee, the recipient of an award, or successful in making a winning argument in court, I wanted it to be because of the merits of my work, not based upon the status of my health.
Likewise, I didn't want clients, potential clients, or other attorneys thinking I could not handle a matter because of my condition. I know what my professional and ethical obligations are and when the time comes when I know I cannot adequately perform my job, I will decline representation or service on a committee.
As the years went by, however, I let a few people know about my disease, all on the condition that the information would be kept confidential.
I told the chief judicial officer because I wanted her to tell me if she noticed anything different in my ability to perform my duties as an attorney or part-time job as a judicial officer (I was never told my skills declined).
I told another attorney because I named him as an insurance company contact person when I sold my life insurance policy in a viatical settlement. I told some fellow PCa patients, and advocates like Howard Wolinsky of AnCan and ASPI, Rick Davis, of AnCan, and Mike Scott, PCai, because I felt I could trust them, and they were disconnected from my personal and professional life.
I created my alter ego “Frank Westerman” in 2009 so I could openly communicate with the PCa world without disclosing my identity. I enjoy living in two separate worlds - the cancer-free relationships world and the PCa world.
Frank Westerman now has a Facebook page, receives offers for credit cards, takes surveys, and attends patient and medical conferences. I imagine one day I will wake up in the morning and I will hear the Twilight Zone theme song, and as the music plays, I will permanently assume the identity of Frank Westerman, and my real identity will vanish without a trace.
In 2019, after receiving assistance and advice from a counselor at the local cancer center, I finally was emotionally able to tell my children about my diagnosis. I still have not told any of my other relatives or those who do not need to know. I can't say this is the best or correct way to handle this issue. It has come with some guilt and regret for not disclosing it to my family. I also ask myself if not disclosing it to my family was/is dishonest? I have no germline mutations but even so, there is some hereditary nature to PCa.
As far as my disclosure of my PCa to the general public and my family is concerned, I liken it to the scene from "The Naked Gun":
If you look at me, there really is "nothing to see here.” so why make it an issue.
All that said, I recognize the validity of the important economics principle of the "fallacy of composition": this theory stands for the proposition that what may be true for one member of a group is not true if every member of the group acted in the same way.
For example, the HOV (high-occupancy volume) lane is only useful if a few drivers use the lane. If all drivers use the HOV lane, traffic in the HOV lane would grind to a halt and the non-HOV lanes would be empty.
Likewise, while a few men can remain anonymous and not disclose their true condition to family and others, if all men acted similarly, there would be no attention paid to the disease and no progress in treating it. Thank goodness for the Howard Wolinskys of the world - they allow the Frank Westermans of the world the ability to remain anonymous but still with attention paid to, and advancements made in the treatment of, prostate cancer.
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