The second opinion advice is great, and what I tell everyone I know who gets cancer.

My mom was diagnosed with stage 1 cancer in 2006 in Idaho. I was a PhD student at MIT at the time and a friend in lab helped me get an appointment at Dana-Farber. I thought it was probably overkill (it was a common cancer) but we did it anyway. They said everything in Idaho was standard of care but suggested one extra test, which Idaho team then reluctantly did, which revealed distant metastasis (stage 4! ), dramatically changing her treatment trajectory. She lived another 15 years (I miss you Mom).

Asking for a second opinion sucks. A lot of us are preconditioned from birth to trust our clinicians. But you're going on a journey and your life (or the life of your loved one) is on the line. Insurance often covers it. Your doctor will NOT be offended.

Think of it this way : if you were deploying code to the mars rover, and your colleague asked to do a code review before you pushed go, would you be offended? This is even more important than that.

The second opinion thing has something I learned along the way. Get it BEFORE you have a treatment plan from the initial diagnosis. We got two second opinions (one for her first diagnosis and one for her recurrence) for my wife's ovarian cancer from Cleveland Clinic and MSK and in both cases the doctors would not advise/override the original doctor's treatment plan.

They were complete no-ops and a waste of time. Faced with that same situation today I would simply lie about whether or not a treatment plan was put into place.

Second bit of advice is to try as best you can to go into clinical trials with an understanding of the landscape of disqualifying treatments. Any immunotherapy treatment, for example, will disqualify you from nearly all subsequent clinical trials for immunotherapy.

Lastly the thing I would recommend for partners of loved ones in the crucible, don't get too distracted by trying to 'save the patient' that you miss opportunities stay connected with them in the process. It's not your responsibility to save their life, as much as it might feel that way when you're in the thick of it.

Yeah absolutely on the 2nd opinion, my dad went into his GP and said “I think I have lung cancer”, after a period of difficulty breathing and low energy. The GP diagnosed him with low iron and gave him some iron supplements, didn’t even get a scan. A few months later he had to have a couple of litres of fluid drained from his lungs while on holiday, turned out to be mesothelioma. Obviously we’d prefer it to be low iron, but better to know what is going on and be able to respond to it.

Other story, for balance: My father was diagnosed (again, in Idaho) with a rare ocuclar melanoma. Very few cases, but highly treatable. The specialist was in SF where I lived at the time. We went there, and it was a very different experience from Dana-Farber. The clinician was an academic who only saw patients like once a week. People were sitting on the floor lined up out the door.

His staff was gruff, there was such limited information as we progressed through the system, there were so many patients there from all over the western part of the US. For many of them it was their first time with cancer, and sitting there in the waiting room with my (non-medical!!!) bio training my Dad would often offer my services to "explain" something. Which I did, and I think I helped, but it was all rough.

The main doctor was so gruff and obnoxious that I emailed my MD friends in Boston (was still in grad school) asking how I could file a complaint.

But at the end of the day that process helped my father (and many of those other people ) get state-of-the-art proton beam therapy, covered by insurance.

Sadly my dad's cancer came back a short time later and he passed away (miss you too Dad).

But now, 15 years later, having been through the healthcare system in so many ways, and having many friends who are academic specialist MDs, I recognize that the doctor in SF was operating with incredible constraints, finite resources, and probably tired. And my Dad got the best possible treatment technology as a result of the second opinion.

But at the time I wanted to strangle the doctor.

I'm writing this just to say that sometimes the second opinion is tough. Sometimes it's in a far-away place or the doctors are jerks. Maybe even borderline unprofessional. They're the bastard operator from hell in their own little world. But again, this is life-and-death.

GET THAT SECOND OPINION EVEN IF THE DOCTOR IS A DICK.

Been through this with my girlfriend who was diagnosed with TNBC in 2015. The second opinion amounted to "guys your doctor is a rock star, there's nothing here that's amiss and you are on a good path". She was cured and remains cancer-free to this day. This doctor had the confidence to say that he would cure it, and as you can imagine myself and my girlfriend were cynical but that's what actually happened. Was round about the time David Bowie died.

When opinions conflict, if the first opinion is right and the second opinion is wrong you could end up receiving an unnecessary treatment that could hurt you. So I think you need to know for sure why the first opinion is incorrect, or at least avoid accepting the second opinion blindly, because the first doctor won't be there to push back.

Of course, I know nothing is ever certain here. Still, having two opinions or more data can be valuable, but only when whoever makes the final decision can actually use that information: detecting any bias and deciding with a good balance between risks and rewards.

Is it ok/recommended to tell the doctor that you're getting 2nd opinion from that you're coming to them for a 2nd opinion?

The only people who trust clinicians are people who haven't been through the healthcare system. There's the before time and after time. It changes you. Every field has good people, bad people and mediocre people. Doctors are no different.

Anyway, I would say I actually had relatively positive experience with Thyroid cancer. I had been seeing my Endo for 10 years at that point since I had hypothyroidism. His nurse was on top of everything. Very calm and reassuring during the whole process.

But all my experiences with the healthcare system outside of that were just disappointing. I had RCVS 2 years ago and I was in the ER and the radiologist summarized the report wrong even though he has read it correctly. They were starting me on stroke protocol and giving me these drugs but I had ChatGPT read it and it was like this is wrong. It's supposed to say no significant stenosis in the neck. It actually said significant stenosis in the neck. The dr reported it immediately and the radiologist corrected it. What a shit show. No one could even give me a straight answer on if I could go back to exercising or when I can get off a medication. Every doctor I saw was completely different. Have a few other stories like that pre LLM's. But you have to advocate for yourself. And always double check the doctors with LLM's now a days.