Thanks for bringing up the financial toxicity issue and prostate cancer. It holds true even in patients with low-risk Gleason 6 disease who opt for Active Surveillance, observing not treating the cancer.
We're told that our cancers may never need to be treated.
But patients on AS can experience financial toxicity in the form of job discrimination and insurance bias.
I experienced the latter. Seven companies declined to sell me term insurance because I opted to not treat my cancer, which was diagnosed 13 years ago and never treated.
There is a movement to rename Gleason 6 as a noncancer, in part, to prevent financial toxicity and also to reduce anxiety levels, which we call anxious surveillance.
Thanks for making some very good points Howard! And the article you helped co-write is excellent. Many doctors are like dinosaurs, stuck in the past and very slow to change. That's why big innovative changes in medicine can take so long.
Thanks for bringing up the financial toxicity issue and prostate cancer. It holds true even in patients with low-risk Gleason 6 disease who opt for Active Surveillance, observing not treating the cancer.
We're told that our cancers may never need to be treated.
But patients on AS can experience financial toxicity in the form of job discrimination and insurance bias.
I experienced the latter. Seven companies declined to sell me term insurance because I opted to not treat my cancer, which was diagnosed 13 years ago and never treated.
There is a movement to rename Gleason 6 as a noncancer, in part, to prevent financial toxicity and also to reduce anxiety levels, which we call anxious surveillance.
As a patient I co-wrote a paper about this with several doctors that appeared in 2022 in the Journal of Clinical Oncology. It was the most-read paper in the journal. https://ascopubs.org/doi/full/10.1200/JCO.22.00123?role=tab
Doctors are divided on the issues.
I followed up with a survey of 450 patients conducted by several other patient advocates and doctors that was a poster in February at the American Society of Clinical Oncology Meeting. I shared the findings here: https://howardwolinsky.substack.com/p/part-i-denial-isnt-just-a-river-in
Thanks for making some very good points Howard! And the article you helped co-write is excellent. Many doctors are like dinosaurs, stuck in the past and very slow to change. That's why big innovative changes in medicine can take so long.