Perspective… A story of discouraged diagnosis

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This is my first blog in over 10 months.  It is different from my previous postings. With the sharing of this personal story, I am hoping to continue blogging on a more regular basis.
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Guidelines matter if you’re a horse.

They might kill you, if you’re a zebra.

Medical school students are taught to look for the horse…the more common and likely answer.  As they follow this logic, the zebra – the less likely solution – is often missed.

I know this because I am a zebra.

In 2015, my wife was diagnosed with Stage 4 colorectal cancer.  I was her caregiver and retired in mid-2016. She passed in mid-2017.

About two months after Laura’s death, in August, I began to have back pain.  In October, during my quarterly diabetes visit, I told my primary care physician about the problem and he – reasonably – suggested an anti-inflammatory.

By December, my pain was growing. Each day, it took me up to ten minutes to be able to maneuver my way out of bed. Since he wasn’t around, I visited another doctor in the practice. She added pain medication.

That didn’t work either.

In January 2018, I had my next quarterly appointment. I told my primary care physician I was a train wreck.  Although I always have a blood test the week before my appointment, he immediately sent me to the lab for another.

That was a Friday.  On Saturday, he called and told me that I had prostate cancer.  A normal PSA is under 4.  I was diagnosed at 599. On Monday, I met the doctor who is now my oncologist.  On Tuesday, I entered the hospital for 10 days of testing and treatment.

I’ve since learned that the American Cancer Society had in 2010 dropped its recommendation for routine prostate cancer screening.  They seem to be calling for less testing for two reasons: a) the disease is slow moving and b) to avoid diagnostic errors leading to unnecessary treatment.

This all made good sense…unless you’re a zebra.

Apparently, mine is a rare form of prostate cancer. It develops rapidly.  So, instead of being diagnosed with a PSA in the single digits, I was diagnosed as Stage 4 with a PSA of 599.  The cancer had metastasized from my prostate to my bones, causing lesions from my skull to lower body. While possibly treatable…unlike earlier stage prostate cancers, it is not curable.

Besides my obvious personal interest in guidelines that reduce testing for prostate cancer, particularly in older men, I also have interest from my seventeen years of experience as the CEO of the Pulmonary Hypertension Association (PHA).

Pulmonary Arterial Hypertension (PAH) is a rare disease in which there is a proliferation of cells or thickening of the arteries between the heart and the lungs.  As the blood flow between the two organs is slowed, the heart has to work harder.  Eventually, the heart cannot keep up and fails, causing death.  Without treatment, survivability for 50% is 2.8 years from point of diagnosis.  The first treatment was approved by the FDA in 1996.  Thirteen additional treatments have been approved since 2001.

Before 1996, diagnosis for PAH patients didn’t matter much.  After all, without treatments what could the medical community do?  Today, with 14 treatments and more on the way, diagnosis matters a great deal.

Yet, for PAH, diagnosis remains elusive.  Unlike prostate cancer which can be diagnosed through a simple blood test (mine took less than 24 hours), a PAH diagnosis is done by a more complex process of exclusion.  In a paper by Lyn Brown, et al, little progress in PAH diagnosis was shown over two decades.  Indeed, 21% of patients took over two years to get their diagnosis…not a good thing, as stated above,  given average survivability for those without treatment of 2.8 years from point of diagnosis.

So, for us at PHA, while we celebrated the rapid expansion of treatments, the Holy Grail was a simple and accurate diagnostic tool. While advances are being made, we are not yet at a point where success can be claimed.

And here’s the simple point of this blog…

Those medical professionals working with prostate cancer – and the patients they treat – are fortunate to have a simple diagnostic tool.  Since 2016, we have watched the current administration in the White House reject scientific knowledge.  The medical community should not do the same.   It seems to me that, rather than offering guidelines that reduce diagnostic testing for prostate cancer, the medical community would do better to use the diagnostic knowledge they have been blessed to uncover to the fullest.  Their refuge is not in withholding available knowledge; it is in offering guidelines for its appropriate use.

At least that’s the perspective of this zebra.

For more:
Laurie McGinley in the Washington Post: After long decline, death rates from prostate cancer stop falling

Medscape: Prostate cancer screening guidelines

Medscape: American Cancer Society guideline for the early detection of prostate cancer: update 2010

Journal of the Advanced Practitioner in Oncology: Screening for Prostate Cancer: The Debate Continues

The Economist: Help or harm:  The furious debate over screening for prostate cancer

Prostate Knowledge (Harvard Medical School): New study supports lifesaving benefits from PSA screening

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2 thoughts on “Perspective… A story of discouraged diagnosis”

  1. Dear Rino,
    Do you remember when my husband was DX with prostrate cancer and I was so upset, you told me about a friend of yours that got through it. You gave us hope. We decided to have it surgically removed, it has now been 6 years and they say he is cancer free. Just be strong and do what ever they offer to you that will help. You are on the top of our prayer list, if you need to vent or just talk…I have a strong shoulder and would be willing to help anyway I can.

    It has been just over a year since we lost our 48 year old son to bile duct cancer. The grieving has been more then I ever thought I would go through in my life time and the pain has been sometimes more then we can bear, but because of our believe in God, we are working our way through it Slowly but trying to move through it. We know and understand what you are going through and please if there is just anything we can do, even if just listening to you and maybe we could give you some little bit of advice we always here for you for sure. Love you and hugs from Minnesota❤️

  2. Oh Rino, I am so sorry to hear about your cancer. Prayers are going out to you. You are one brave man and have been through so much not only on a personal level but you have “been” there for so many zebra’s.
    Do continue to post to keep us all up dated.

    Gentle (((hugs))) to you my phriend.

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