For today’s #WebinarWednesday, I want to pay tribute to my friend’s dad who passed away July 14th 2014; he was one the patients presented in this brain cancer podcast I did April, 2012:
His son wrote to friends and family:
It’s been a long and painful road for my Father. For those who did not know, my Father was battling both stage 3 brain and prostate cancer over the last 6+ years. Since stage 3 brain cancer was the more serious of the two; the medical focus was on the brain. He was a tough one; a true fighter… one of the strongest willed men I was fortunate to watch, learn from and know. He did the impossible and beat brain cancer last May, 2013.
In 2007, his neurological symptoms led to the concurrent discovery of his brain and prostate cancer. Because his urologists believed that the brain cancer would kill him before the prostate, they refused to treat the prostate. I explained the importance of treating both to him and his wife many times. I begged them to demand treatment of the relatively curable prostate cancer. But each time I was strongly rebuffed by the naive and horrifying blind faith they bestowed upon their urologists.
Sadly, even his neurosurgeon declared him cured of brain cancer in 2013 and recommended prostate cancer treatment but the urologists still refused to take out the prostate and instead gave him ineffective and toxic chemotherapy that had no place in prostate treatment therapy. In the end they were wrong about the brain cancer killing him before the prostate cancer but that was of little consolation to anyone.
If he had been able to demand prostate removal back in 2007, he might still be alive but it was so important for the doctors to be “right” about their non-treatment that they refused to yield.
The moral of the story ? Either be your own advocate or don’t have the audacity to actually recover from something the doctors think should kill you before the more indolent, curable disease of prostate cancer.
This case reminds me of the case of Nurse Jackie Close, who died of metastases because her doctors didn’t believe it was worth it to remove the primary tumor even though she had already been cured of metastases of her lung cancer to her spine and brain. I begged her to find a maverick to take out the primary. She could not.
Doctors are seldom allowed and even less frequently motivated to deviate from standard of care, which frowns upon removing the dandelion (the primary cancer of origin) after the seeds have spread (the distant metastases).
But the institutionalized inaction also spreads to a completely dandelion-free field as in the case of my friend’s dad who had absolutely no evidence of brain cancer for years. And non-treatment dogma also applies to old people in general. In truth, the entire central focus of orthodox cancer treatment is a bleak hopelessness seeking every excuse to write the patient off rather than risk making things “worse” (unless it involves lucrative cancer therapy).
I am not advocating risky and low yield surgery for poor prognosis cancers or widely metastatic disease. But if every case is looked at actively and with the patient’s unique disease progression considered, sometimes “cherry-picking”distant metastases or the removal of a primary tumor is indicated, in my opinion.
I recently met an elderly patient who had a partial colon resection at the same time as a multiple hepatic lobectomies for his metastatic colon cancer after refusing chemotherapy. I commented that he should be very grateful that he was cured and he didn’t understand why. The reason is because standard of care states don’t operate on liver metastases once it is is outside the colon; instead poison the whole system.
His surgeon at Kaiser Hawaii is a kind of hero in my opinion. Maybe he just didn’t like seeing patients in the office and preferred to spend 5 hours in the OR. But I prefer to think he used clinical judgement and altruism to help someone despite actually risking criticism and possible sanction if an authority figure decided to crack down on his appropriately aggressive surgical management. Sure we can cringe at the expression of a doctor who “plays God” but we should also decry the panels of doctors acting as Grand Inquisitors just to elicit fear and submission.
Having been a clinical doctor and a surgeon, I have witnessed the incredible selfishness and short-sightedness that takes place at every level of surgery. In patient selection, choice of approaches, completeness, attention to detail, and follow-up care. Typically, doctors do what is right, especially if it is convenient and someone is watching over them. But I have found that is their ability to care, take chances, and trust clinical versus cookbook care erode with time of they aren’t actively checking their ethics and their passion for helping patients.
In closing, I had a lovely 79-yo lady tell me yesterday that her favorite doctor went concierge, another two just quit medicine, and the final one was swallowed up by a group-model HMO.
You could say there are few Gary Cooper, “High Noon” heroes in medicine anymore. Or you could say that anyone still practicing medicine is a Sisyphean hero of sorts. Well, here’s to the fact that all hills have a “down-side” to them:
If you are choosing a doctor, the most important thing is to ask the OR techs and nurses who does the best technical work while making sound intra-operative choices. From that list, I would shop for someone who takes the time to listen and tell you uncomfortable truths and not just promise the moon. Finally, they should inform you and then respect and support your decisions.
Please don’t just go to the biggest ego or name because they are going to do what is right for their ego and their name, not individualize your care in many cases.