A drowning man will reach for the blade of a sword
I feel for this guy, as you do. I would throw in the following:
There are a lot of people trying natural/alternative ways to heal from cancer. Things like a very low-carb diet to starve cancer, high dose Vitamin C or other vitamins. The cost to not eat carbs is significant, but not really toxic. I mean, more broccolli, less potato chips? Is that bad? I've known people with cancer who were drinking soda, and I just couldn't get away from feeling like they were shooting themselves in the foot every time they did that.
I think there's validity in attempting to save one's own life when the conventional treatments have failed. I struggle with whether I can even trust conventional treatments at all especially if they destroy your immune system which should be what's fighting cancer in the first place. There's honesty in doing it in front of a crowd. Your point, though, regarding trying pharma drugs without being in a study is well-taken.....
I wouldn't be surprised if in his situation, you'd be a martyr for the studies forgoing any treatment that doesn't have data behind it, but I can't fault others for doubting conventional medicine when they are in the same situation.
On the other hand, I have a colleague who has a form of cancer. He is very smart and got the most opinions he could. He was told that his condition is stable, and it should be monitored because there's no good treatment. Then he meets another retired doctor, who has some connections and before long his chart is being reviewed across the country . Then he's told we have a friend at another hospital somewhere else who's doing a clinical trial of this exact rare illness and it might help you. He gets in the trial more by luck than anything and guess what ? His condition is now much better. Objectively all his markers have dramatically improved and he has no toxicity. He had the ability to get treatment simply because he socializes with other doctors and this basically allowed his case to go across the country at the speed of Email. I'm leaving out the details because his tumor is rare enough and I don't want to be too descriptive because it'll be clear what's going on but you get the point. We were talking about this today and what if he wasn't a physician ? Would he have had any hope of getting matched to this clinical trial? No
I was in 2012 the subject of this article (the oncologist, although I am not an oncologist).
I debated these exact talking points with my oncologists at the Seattle Cancer Care Alliance. I ultimately won the debate when I was restaged in 2022 as Stage 0 (from Stage 4, terminal, mCRC).
My statistical chances of a "cure" at the time of diagnosis were so negligible that everyone assumed some sort of data error was responsible for the flattening of the curve around the 2% 10-year survival mark.
In the end, my insurance company spent about $2.8 Million on my various treatments, and I spent about $280,000 out of pocket.
The costs were outrageous, but most of them - as I discovered in horror - were mostly to pay for the gigantic bureaucracy of the medical, hospital and insurance system, which actually grow bigger even under a single-payer model when you factor in the regulatory costs and inefficiencies of governance.
I don't want to throw anyone under the bus, but at my insistence we deviated from standard protocol in many different ways. Usually, insurance was our biggest obstacle to such deviation.
Given a terminal diagnosis, I was willing to take reasonable risks. I tried to enroll in radical trials but the most promising ones were in other countries. So I convinced my oncology panelists to effectively replicate some of those trials.
Without endorsing any treatment in particular, two of the rather inexpensive non-protocol experiments for mCRC turned out to be Cox-2 inhibitors (like celecoxib) and ridiculous amounts of vigorous exercise (pro tip from The Dana Farber Cancer Institute), even while undergoing sickening platinum-based chemotherapy.
I cannot tell you how many oncologists huffed and puffed about the "no evidence" futility of our tweaks to the regime, but here I am to tell you about it.
I generally agree with the will to survive.
Are there starving villages all over the world? Of course there are. But they too have a will to survive and they too must use it.
I am 82 and have just competed chemotherapy for lymphoma on my liver. My experience has been wonderful-- so much more energy; tighter skin; more strength and flexibility and balance etc etc. I am at Memorial Sloan Kettering. No one is interested in finding out why I am rejuvenated. Meanwhile, so many friends have suffered and I see others at this hospital in pain. For sure, cancer should give one permission to do euthanasia so no one need suffer. Very disappointed that curiosity and creativity are lacking.
This is ALWAYS the case. It was especially true during covid. Conventional treatments are great for everyone else, unless it is a connected person's life on the line. Then it's kitchen sink time.
The premise that the only valid evidence is the evidence from well-controlled RCTs is unreasonable and very limiting. Many potentially effective remedies will never be subjected to such trials because there is no profit in them. But that does not make them any less effective. Many natural remedies, including those related to diet and lifestyle, fall under this category.
Secondly, anecdotal evidence can be very powerful too. We make some of the most important decisions of our lives, such as which college to go to, which job to take, which home to buy, and even who to marry, based on anecdotal evidence. So why can't we choose a medical treatment based on anecdotal evidence?
I think doctors do get different treatment. Not because they are any more special, but because (most likely) their friends are doctors. And everyone in any vertical treats their friends differently than a patient/customer/patron etc. That's what we do. I'm not saying that's a bad thing, it's just the way we are. And while I can understand the position of "hail mary after hail mary" were it my family member and I had access to trials/drugs, I'd reach for that blade of sword until my hands - my arms - are gone. That, too, is who we are.
This reads a bit scattered.
For this man, an oncologist, with his medical experience, to choose to step out past waiting for a drug RCT is bad?
A poor example?
Leading people astray?
Giving false hope?
Despite desperate times requiring desperate measures?
Are you saying he has fallen prey to Big Pharma?
Who of course presides over all?
This is very unclear, to me at least
Drs. Zalenko, Fareed, Tyson, Urso, Bowden, Varick, Marik, Kory and others stepped out of the grandstand, And played ball.
There are countless unacknowledged studies out there. And many more unpublished.
It’s a collective force.
Not a monopoly
This is called Science. Exploration.
I laud this doctor. For showing us his experience. That is feared, unknown and known.
We must have Hope!
New discoveries are before us. If we reach out. Unfettered by fear and erring human hypothesis
Seems my comment was misunderstood. Euthanasia is the patient's determination but they should not have to struggle if they choose this option. Those option should be legal. Why congratulate me?? I did nothing , but my case should be of interest to find out how others having chemo can do so without side effects. That's curiosity which is lacking.
Vinay, can you share a link or more info about the essay you allude to at the beginning of your essay. Some of us might like to read it as well.
Agree with your thoughts but a Little confused by this statement: “They might think that with enough connections, and enough hail Mary passes, a doctor can get better care than the average person, but nothing is further from the truth.” You described that this doctor/patient was receiving all kinds of drugs/various cocktails, some of which had been proven to not work or were unproven etc....you don’t think he got the full Monty because of who he is/what he knows?
The same grasping-at-straws fear this oncologist showed was the same fear a lot of other docs showed during COVID. Fear is a deadly weapon, y'all...and it will completely destroy your clinical reasoning and clinical bravery if you let it.
As I read my mind went back to my own thoughts of the “what if” game. My bride and I have thoroughly discussed my own desire to do nothing when/if that diagnosis happens. I am and have always been quality over quantity for my own life. And I’ve had enough surgeries - major ones - for 3 lifetimes. I’ve had enough and will dance till the end. THESE kinds of things are very important to discuss with family.
Thank you for this thoughtful, brave article . We all reach for swords, it's exquisitely human. I hope I always remember "Our life stories, the history of the world, and the future were written by the same hand" - Paulo Coelho
Dr. Prasad it is indeed difficult to hear about cancer taking a younger person and understable that the person would try almost anything. But I appreciate you writing on the subject. Every time inequity is brought to light it brings attention. 🙏 to the patient.