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.
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.
(fuck cancer)
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.
Of course, if additional tests are done by the second doctor and new information is uncovered, that helps.
My ex-wife was diagnosed with thyroid cancer, and the first doctor said that urgent surgery was needed and both thyroids need to be removed.
She obtained a second opinion from a well-known oncologist, who said that only part of one thyroid needs to be removed, and it wasn't so urgent.
Because everyone wanted to believe the second doctor, that was the option she went for.
This was a very expensive doctor. Shortly after the surgery, he notified her that, in fact, the cancer had spread to both thyroids, and the other one had to urgently be removed as well. This led to double the medical bill, opening up her neck twice, and all the accompanying inconvenience of two surgeries.
It was a strange situation where an incorrect assessment by the doctor directly led to that doctor making more money.
Also, it highlights the tough decision in terms of how you decide between two conflicting opinions if there are no additional diagnostic results to assist.
I don’t regret it.
So, unless the first two opinions are completely identical - yeah, definitely get the third. Better to go for people with slightly different specializations if relevant.
My late wife was treated for metastatic melanoma at MSK. Their approach is to have clinical teams and a tumor board that are assigned patients with related cancers. They are seeing many patients and there’s a warm hand off between specialists. Your radiation oncologist, medical oncologist and surgery / neuro specialists are on a team and know each other and are often familiar with the cases. In my wife’s case the community oncologist was wonderful, but he was a sole practitioner for this particular cancer.
In the second opinion scenario, they get to use that experience and caseload to look at a case with some perspective. Your community oncologist likely works on a small team and may not have the luxury of time and exposure to trials, etc.
Think of it as a second set of eyes.
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.
Current frontier LLMs are incredibly powerful diagnosticians. They will generally give you the best assessment that can be made on the basis of the information you include in the prompt. So it's important to make sure that information is accurate, and also that it's phrased well enough to allow the model to weigh the importance of each detail.
Unsurprisingly, the same tips are important when communicating with your actual doctors.
I don't recall the specifics, but there were symptoms of an ENT infection, nothing serious. I remember being concerned about a white lump on one of my tonsils. The doctor's diagnosis? A stuck piece of rice.
No, it was not a piece of rice. It was a tonsil stone. It happens almost every time I get sick. And I guarantee that if I shared my symptoms and a photo with AI, it would render the same conclusion.
Would it be dumb to blindly trust everything a model says? Sure. Should you trust it alone, especially for major issues? No. But having received such a stupid and brain-dead diagnosis from a supposed "professional" doctor in the past, I would never give them the automatic benefit of the doubt.
This is literally life-and-death. My recommendation is for full transparency, it was crucial for us.