I’ve been playing Bob Seger for the last year. Such a great storyteller with an amazing voice!!
I always encourage ‘alternative’ breast cancer people to find out the cure and survival rates of patients with the same cancer from the ‘doctor’ before committing. It feels like some people just have a death wish . . .
I hope - if cancer ever knocks on my door - that I will have access to you. I can relate to snake oil salesmen and women 100% in my field (addiction and chronic non cancer pain). I came from a bit of a different side of “evidence” which was misinformation by docs and pharma to make money. I clearly remember the Porter and Jick “evidence” and watched pain specialists lapping up huge profits. Meanwhile I was lauded for “allowing my patients to suffer” for helping them get off of opioids, change lifestyle, help with the head shrinking traumas that exacerbated their pain, etc. Addiction and opioid induced hyperalgesia were poo pooed by many “experts” but understood when I saw the $ involved. I also saw “ultra rapid detox” as a thing. None of it worked and we see where we are with opioids of today.
In your case, however, denial in the patient became the tool of division - he wanted an easier softer way and went for it. Not your fault and certainly nothing you could say could convince him in any other way. I know how denial works and it’s a disease unto itself imo.
I sure appreciate you listing the conundrum you as the provider who KNOWS went through. It’s hard to see people smugly walking out the door to a likely miserable death. I saw it a lot over my career. The ones I remember today are the ones who came back and said, “Yeah, I think you might be right here and I’ll go thru what I need to.”
A clinician who does not bullshit or paint rosy pictures who is - HUMAN - is rare. I’m glad to know you are fighting this fight because you are clearly the right kind of doctor for such a terrible ordeal of treatment.
This is a really helpful perspective. When I first found out I had cancer (early stage rectal, considered removed with surgery), and that I'm at increased risk for cancer (I have Lynch Syndrome), I went online desperately looking for something I could "do" to fight cancer. This website, "Chris Beat Cancer" kept popping up. I bought his book and watched a lot of survivor stories and interviews he has on the site. He mostly advocates for radically changing diet and is skeptical of chemo (he refused chemo after having a stage 3 colon cancer removed via surgery), but is careful to not say outright to not do chemo. I did and still do follow all my oncologists' advice, but I'm interested in how in depth you think oncologists should go on diet and nutrition (or can go?) and what you think of things like Chris Beat Cancer along the lines of what you spell out in this post.
Thank you so much for this comment and question! It's so hard to keep track of what patients are reading and sometime the latest trend doesn't reach me until a patient asks about it.
There is not great evidence that what we eat contributes to the formation of cancer at an individual level. Certainly, there are supplements that can decrease the effectiveness of cancer treatment (Vitamins A,C,E come to mind) as shown in randomized trials.
I refer patients to our cancer dietitian for detailed questions. It's a free service at most medium to large size cancer centers and they do a great job of keeping up with the current data. If that's not available or patients want to hear more, I direct them to The Cancer Dietitian. https://cancerdietitian.com/.
There are a number of reputable licensed Canadian doctors on YouTube that are doing a good job of explaining things doctors don't have time for one on one. Us non doctors never had so many goo sources of information before.
I have been told by a doctor "you should have googled it yourself, you'd know I wasn't going to help" and off I went. I don't see a doctor unless I've googled it and think there is a medication of surgery that I would benefit from, rarely.
I can’t believe a doctor told you that, Chris!! 😱There are some wonderful doctors on social media doing the Lord’s work of trying to get good information out there. I’m in awe of their commitment and creativity!
I think doctors struggle with things they really can't treat. In my case I'd had pain in a testicle 3 years before I suggested a urologist. Up to then the best I got was a suggestion I was an anxious person and not to come back, I wasn't dying. Right at the start I'd already ruled out cancer so I knew I wasn't dying I just was in pain every day.
After google it yourself doctor and no further help from my GP I switched GP's which took some time. My new GP just repeated the same process I had googled and sent me to another eurologist. This one introduced himself with "how bad is it, are you doing the paperwork to buy a gun" and quicly inturupted to tell me it didn't matter. He suggested it was nerve pain and assured me it would never get better and sent me on my way.
If it is nerve pain there aren't really good treatments. I have on my own and with some help from physiotherapists managed to either make it a little better to at least manage it better. I'm 8 years in and it does seem it will never go away. I still don't know it's nerve pain but it doesn't matter unless it's something that is treatable.
None of the doctors I talked to over the years could tell me the 3 or 4 possible causes, explain that they aren't treatable and suggest some ways to reduce it or live with it better. I can only defend that they are short on time, don't have the knowledge and by the time they do they've built up some separation from other people's pain.
When I broke some ribs a few years ago I got a lot more sympathy and follow up but really there isn't anything for them to do but an x-ray gives them a quick answer and when you wince they can see it hurts, you don't have to convince them of it. This is actually the easy pain to get through, it gets better every day, remaining calm and still gives you a break from pain and I can understand it myself easily.
I went with the recommended treatment of chemo & radiation. I was spared permanent loss of taste, voice & swallowing. And one year and one month onward, I'm still in no evidence of disease status. This is a powerful example of what can happen quickly if one avoids the tried and true. Sure, some incredible therapies seem imminent. I read about the researcher who reportedly cure her own breastfeeding cancer. I keep tabs on the progress of these seeming breakthroughs. But I realize that hesitation during Summer 2023 would have almost certainly led to death.
So good. I feel seen : - ). This is exactly it - "The cost of “doing your own research” may be less time spent hearing what the person who is willing to sit in front of you thinks. "
You described a real frustration I have had with these kinds of alternative or social media medical diagnoses and treatments. I have to know so much; it's my job. But I can't know everything. So when patients find something really radical or out there, they will often express dismay when I say I don't know about it or haven't heard about it. "You call yourself an immunologist and you don't know about basophil suppression sensitivity therapy?"* So when I haven't heard of the most recent snake oil, you can see that these patients lose respect for the genuine knowledge and expertise that I do have.
*I made up that term but it's not far off from the relatively random stuff I hear on a regular basis...
Fantastic post, thank you. Brutal situations, complicated by misguided charlatans. I think the charlatans believe in their magic, as to question it is to question their core identity. As a patient buys in we witness double harm from the illness itself and the betrayal of trust in a supposed healer. And then there is the transactional loss of money and life.
Thank you for sharing about your experience with a misdiagnosis. I, too, have made mistakes and wrote about them here. It is awful to know that our mistakes impact people and I'm sorry that you were one of them. Being a physician is being confident in what you know, but also to know what you don't know. Honest communication about that is important.
I’ve been playing Bob Seger for the last year. Such a great storyteller with an amazing voice!!
I always encourage ‘alternative’ breast cancer people to find out the cure and survival rates of patients with the same cancer from the ‘doctor’ before committing. It feels like some people just have a death wish . . .
I like that approach, Lessly. Encouraging people to dig just slightly below the surface will uncover the truth about their "miracle" cures.
I hope - if cancer ever knocks on my door - that I will have access to you. I can relate to snake oil salesmen and women 100% in my field (addiction and chronic non cancer pain). I came from a bit of a different side of “evidence” which was misinformation by docs and pharma to make money. I clearly remember the Porter and Jick “evidence” and watched pain specialists lapping up huge profits. Meanwhile I was lauded for “allowing my patients to suffer” for helping them get off of opioids, change lifestyle, help with the head shrinking traumas that exacerbated their pain, etc. Addiction and opioid induced hyperalgesia were poo pooed by many “experts” but understood when I saw the $ involved. I also saw “ultra rapid detox” as a thing. None of it worked and we see where we are with opioids of today.
In your case, however, denial in the patient became the tool of division - he wanted an easier softer way and went for it. Not your fault and certainly nothing you could say could convince him in any other way. I know how denial works and it’s a disease unto itself imo.
I sure appreciate you listing the conundrum you as the provider who KNOWS went through. It’s hard to see people smugly walking out the door to a likely miserable death. I saw it a lot over my career. The ones I remember today are the ones who came back and said, “Yeah, I think you might be right here and I’ll go thru what I need to.”
A clinician who does not bullshit or paint rosy pictures who is - HUMAN - is rare. I’m glad to know you are fighting this fight because you are clearly the right kind of doctor for such a terrible ordeal of treatment.
Jim- you are so kind.
You were hugely helpful without even knowing it with my daughter’s journey with melanoma. She’s currently cancer free! 🤞🏽
Excellent essay. Unfortunately, it also applies to some MDs who don't check their biases. We discussed this often when I taught med students.
Every talk I used to give started with “I’m Jim and here are my biases. Now let’s get to checking em!”
😔Unfortunately, yes.
This is a really helpful perspective. When I first found out I had cancer (early stage rectal, considered removed with surgery), and that I'm at increased risk for cancer (I have Lynch Syndrome), I went online desperately looking for something I could "do" to fight cancer. This website, "Chris Beat Cancer" kept popping up. I bought his book and watched a lot of survivor stories and interviews he has on the site. He mostly advocates for radically changing diet and is skeptical of chemo (he refused chemo after having a stage 3 colon cancer removed via surgery), but is careful to not say outright to not do chemo. I did and still do follow all my oncologists' advice, but I'm interested in how in depth you think oncologists should go on diet and nutrition (or can go?) and what you think of things like Chris Beat Cancer along the lines of what you spell out in this post.
Thank you so much for this comment and question! It's so hard to keep track of what patients are reading and sometime the latest trend doesn't reach me until a patient asks about it.
There is not great evidence that what we eat contributes to the formation of cancer at an individual level. Certainly, there are supplements that can decrease the effectiveness of cancer treatment (Vitamins A,C,E come to mind) as shown in randomized trials.
I refer patients to our cancer dietitian for detailed questions. It's a free service at most medium to large size cancer centers and they do a great job of keeping up with the current data. If that's not available or patients want to hear more, I direct them to The Cancer Dietitian. https://cancerdietitian.com/.
Thank you for reading and again for your comment!
A terrific post, Dr. Wentworth. So needed, especially at this moment in US history.
Thank you, Marcia!
There are a number of reputable licensed Canadian doctors on YouTube that are doing a good job of explaining things doctors don't have time for one on one. Us non doctors never had so many goo sources of information before.
I have been told by a doctor "you should have googled it yourself, you'd know I wasn't going to help" and off I went. I don't see a doctor unless I've googled it and think there is a medication of surgery that I would benefit from, rarely.
I can’t believe a doctor told you that, Chris!! 😱There are some wonderful doctors on social media doing the Lord’s work of trying to get good information out there. I’m in awe of their commitment and creativity!
I think doctors struggle with things they really can't treat. In my case I'd had pain in a testicle 3 years before I suggested a urologist. Up to then the best I got was a suggestion I was an anxious person and not to come back, I wasn't dying. Right at the start I'd already ruled out cancer so I knew I wasn't dying I just was in pain every day.
After google it yourself doctor and no further help from my GP I switched GP's which took some time. My new GP just repeated the same process I had googled and sent me to another eurologist. This one introduced himself with "how bad is it, are you doing the paperwork to buy a gun" and quicly inturupted to tell me it didn't matter. He suggested it was nerve pain and assured me it would never get better and sent me on my way.
If it is nerve pain there aren't really good treatments. I have on my own and with some help from physiotherapists managed to either make it a little better to at least manage it better. I'm 8 years in and it does seem it will never go away. I still don't know it's nerve pain but it doesn't matter unless it's something that is treatable.
None of the doctors I talked to over the years could tell me the 3 or 4 possible causes, explain that they aren't treatable and suggest some ways to reduce it or live with it better. I can only defend that they are short on time, don't have the knowledge and by the time they do they've built up some separation from other people's pain.
When I broke some ribs a few years ago I got a lot more sympathy and follow up but really there isn't anything for them to do but an x-ray gives them a quick answer and when you wince they can see it hurts, you don't have to convince them of it. This is actually the easy pain to get through, it gets better every day, remaining calm and still gives you a break from pain and I can understand it myself easily.
I went with the recommended treatment of chemo & radiation. I was spared permanent loss of taste, voice & swallowing. And one year and one month onward, I'm still in no evidence of disease status. This is a powerful example of what can happen quickly if one avoids the tried and true. Sure, some incredible therapies seem imminent. I read about the researcher who reportedly cure her own breastfeeding cancer. I keep tabs on the progress of these seeming breakthroughs. But I realize that hesitation during Summer 2023 would have almost certainly led to death.
So good. I feel seen : - ). This is exactly it - "The cost of “doing your own research” may be less time spent hearing what the person who is willing to sit in front of you thinks. "
PS I was denounced, not lauded for my views on the overuse of opioids for CNCP! 🤦🏻♂️
lol I am just a few days post op from a huge abdominal surgery and didn’t want to re-type! 🤣🤣🤣
You described a real frustration I have had with these kinds of alternative or social media medical diagnoses and treatments. I have to know so much; it's my job. But I can't know everything. So when patients find something really radical or out there, they will often express dismay when I say I don't know about it or haven't heard about it. "You call yourself an immunologist and you don't know about basophil suppression sensitivity therapy?"* So when I haven't heard of the most recent snake oil, you can see that these patients lose respect for the genuine knowledge and expertise that I do have.
*I made up that term but it's not far off from the relatively random stuff I hear on a regular basis...
Fantastic post, thank you. Brutal situations, complicated by misguided charlatans. I think the charlatans believe in their magic, as to question it is to question their core identity. As a patient buys in we witness double harm from the illness itself and the betrayal of trust in a supposed healer. And then there is the transactional loss of money and life.
Thank you for sharing about your experience with a misdiagnosis. I, too, have made mistakes and wrote about them here. It is awful to know that our mistakes impact people and I'm sorry that you were one of them. Being a physician is being confident in what you know, but also to know what you don't know. Honest communication about that is important.