Comment by jcims
4 days ago
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.
> 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.
While using this information for comparing clinical trials is fine, I want to emphasize that it would be phenomenally short-sighted to skip first-line approved immunotherapy in order to preserve the option for some random trial later on.
I'm not sure if you're actually suggesting this, but immunotherapies are some of the best cancer therapeutics that exist, so skipping approved drugs for future experiments is just a bad idea.
Well pointed out and I completely agree with your take.
In our case it was a clinical trial that the oncologist was aware of and we got in. I'd obviously heard of clinical trials but that was my introduction to the machinery by which they operate.
This may be a philosophical point of view, but I do not see much personal value in clinical trials. You're banking on there being a significant shift in technology/knowledge that occurs right between the time you are diagnosed and the time you have left to treat it. Just as a Bayesian probability, it's extremely unlikely to be the case.
Most studies that which reach stage 3 will not be approved, and that's because they're found to to be unhelpful or even harmful. So the most likely scenario is you do nothing or even hurt yourself by seeking out clinical studies, all of which will be optimistically framed as promising and potentially revolutionary. This can be particularly dangerous if you're opting into a trial in lieu of the standard treatment, as opposed to in addition to such.
> You're banking on there being a significant shift in technology/knowledge that occurs right between the time you are diagnosed and the time you have left to treat it. Just as a Bayesian probability, it's extremely unlikely to be the case.
The probability that I think you're talking about here is not actually relevant, given that the trial is already underway. Basically, the "potential advance" event has already happened. (Similarly, the probability of getting shot by an arrow is not relevant once the arrow's already poking out of your body.)
Given the trial is already underway, the probability that matters is the fraction of treatment candidates at the phase you are considering that make it all the way through; for phase 3 trials, this is 58-65% [0], which is actually pretty good. Of course, rates for earlier phases are much worse because there's attrition at each phase.
0: https://patentpc.com/blog/clinical-trial-success-rates-how-m...
A treatment being approved doesn't mean it's more effective than existing treatments, only that it is effective. And even then, not always as in the case of the controversial Alzheimer's drugs. Looking up some exact numbers on this, for oncology/cancer about 35% of treatments at stage 3 trials will end up approved/produced. [1] This [2] study looked at the 632 medicines approved (in the French market) and found that 25 ended up providing a substantial clinical benefit relative to existing treatments, so a bit under 4%. Even with just those two multipliers you're looking at around a 1% chance of the outcome most people are aiming for with trials.
[1] - https://academic.oup.com/biostatistics/article/20/2/273/4817...
[2] - https://pmc.ncbi.nlm.nih.gov/articles/PMC10660249/
That’s definitely one way to look at it.
I would just say that ‘dangerous’ is relative and when the standard of care leaves effectively no hope, your tolerance for risk can change. Yes this does increase that chance of shortsighted decisions or manipulation. That just comes with the territory, I’m still very appreciative that we have the option to elect to participate in the peocess.
The bigger problem with trials is not the danger, so much as the fact that they're unlikely to do anything.
As GP noted, most drugs don't work. To make it a bit more specific, even in phase 3, the failure rate for cancer drugs is something like 50%. And that's typically for some non-survival endpoint (assuming you even get the treatment, which is itself a coin flip).
Clinical trials are noble, admirable things to do, but too many people think of them as treatments, when they really are not. They're an experiment that you do with your body when you reach the end of the road and there are no more options.
It always makes me a little sad to hear how patients talk about trials and fight to get into them, as if being in the trial is somehow progress. Expectations are not being managed properly.
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I lost somone to a rare cancer with almost zero chance of survival. A treatment with 65% success was available 30 days after they died. Ill always wonder if things could have been different. Maybe if we looked harder for trials but like you we thought it a hopeless waste of the limited time left.
I’m sorry for your loss. Words from an internet rando don’t mean much, but you did the best that you could so don’t worry about what ifs. Do your best right now.
What do people in those 65% actually experience? Long cancer-free life?
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I think because trials take so long, the probability might be higher than you say.
All ground-breaking treatments/therapies were initially only available as a clinical trial.
> I would simply lie about whether or not a treatment plan was put into place.
Prompt engineering!
Sadly, you learn that honesty is not the best choice always. And an honest answer is best given without too many priors.
(I treat patients at a cancer center, but opinions are my own and not those of my employer.)
I fully encourage any patient who wants another opinion to get one. Definitely really good advice to seek one out before you start on your treatment plan, if it can be done without undue delay. I think of planning cancer treatment like lining up to take off for a flight: some plans even if imperfect are more dangerous to alter than continue if they've already been put in motion. There are--rarely, thankfully--times where we don't end up concurring at all in the diagnosis or treatment, and this is all best sorted out before the first treatment.
But a second opinion isn't a waste just because it agrees with the initial plan. In my experience, that's actually the most common outcome, and I think it's a really good thing if a second opinion can give deserved reassurance that your original team is doing everything by the book. For many common cancers, there's consensus as to the most appropriate first-line treatment because there's peer-reviewed evidence and agreement on how to apply that evidence. When all of it points towards an effective treatment, down to a standardized dose and schedule, and it's a really good thing!
There's some subtlety that arises when there isn't a clear consensus as to which of (say) two reasonable approaches used by different comprehensive cancer centers is best. If you look at guidelines, both of those approaches would be listed as appropriate, but patients might be recommended one plan at center A and a different one at center B.
What it can come down to is that center A delivering treatment A demonstrates comparable results to center B delivering treatment B. In that scenario, if a patient lives down the street from center A and travels hundreds of miles to see me for a second opinion at center B, I would almost always agree with getting treatment A at center A. Not because I'm trying to manage what center A would think of me, but because I'd truly believe it's in that specific patient's best interest. First, all else being equal, I'd have no grounds to think that traveling hundreds of miles to get treatment B at center B would be better than staying local. Second, in general, I'd strongly doubt that getting treatment B at center A (which wouldn't be the plan they'd have the most experience with) would be superior to getting treatment A at center A.
And, yes, I absolutely have recommended when appropriate for patients to transfer care to our center, and I have also recommended when appropriate for patients to leave our center to go elsewhere (for example, for a particularly promising clinical trial option). I've seen every one of my colleagues do the same without hesitation.
This is all just from one person's perspective, of course. I know patients and families can come from different and totally valid vantage points. But to sum it up, please don't worry about managing your doctors' emotions about getting a second opinion, and find a place where you can be confident that the folks giving you their second opinion likewise aren't thinking about managing your doctors' emotions. Hopefully, they'll earn your trust that a concurring opinion means they really do think your original team has laid out the plan that's best for you.
I’m curious: why isn’t a “second opinion” included in the standard medical protocol?
As an engineer, embedding such a check step (basically a PR review for your body!) in the standard workflow feels very natural. But in the medical context, getting a second opinion usually needs extra effort by the patient and often involves awkwardness.
It feels involving too much friction given the high stakes. What is your opinion on this?
Good question!
There is a standard practice at cancer centers which would be more the equivalent of PR review. Often it’s called “tumor board” but names vary (ours is called “case conference”). Depending on the institution and department, all, most (anything but the most straightforward), or some (unusual, advanced, prompted by patient discussion, etc.) cases are brought up for a consensus opinion. Like PR review, the format and formality of this process will differ institutionally, but some version of it is standard as part of the “workflow.”
If the specific department reviews all or most cases as a matter of course, it may not even be mentioned to patients (let alone requiring them to ask for it) unless the consensus opinion alters the original plan. Pathology or radiology consensus interpretations if they occur usually precede the issuance of a final report (so as to avoid giving one interpretation that’s potentially acted on but then amended) and are notated with specific verbiage.
A second opinion generally means transferring records and tissue samples outside the original institution. Think of it more like assigning the same bug report to two teams. There is a role for this, but I wouldn’t think of it as PR review.
I'm not the poster you're responding to, but I suspect (bitterly) that it's because engineers and architects are held liable if their inattentiveness to detail causes someone to die, whereas medical professionals are not unless they do something so wildly negligent that you could prove it led directly to an already sick patient's death. (And even then). In most engineering scenarios, there's a paper trail leading back to every decision, and what you're working on is a determinstic system with known inputs and expected outputs. In the medical field, it seems as if a second opinion is more akin to getting food at a restaurant and then taking it to another restaurant to ask the chef if it's too salty. The inputs are subjective, the results can't definitely be traced to them, and no one expects anyone to live through the meal anyway.
Thanks for writing this. It's really thoughtful. My Dad is being treated for Stage 3 at the moment, and after months of delay was told that he wasn't on "real" chemo, just some sort of palliative treatment. No one can get a clear read on what the doctors told him, and he's fairly confused himself... it's basically a nightmare game of telephone.
When it comes to what the OP was talking about... those of us who are conflict-averse and can't get ourselves to make dozens of unanswered phone calls, are we just shit out of luck if we get into that situation? As much as I hate it now if it involves disputing a mistaken Amazon purchase, I imagine I would just give up if I were already suffering. Is handling bureaucratic gatekeeping the only way to get care, outside a top tier cancer center, in your opinion? My dad's got some money, he's got private insurance. I want to say that if I were him I would have hired an advocate of some sort, to process all of this. I don't even know if a thing like that exists.
We had something similar with my father in law who just passed from pancreatic cancer.
The doctors each saw one small part of the case, he was being passed between multiple doctors and NPs. There was no coherence. At one point he ended up on so many medications that made no sense he passed out. Only at the hospital when a doctor looked at everything together did they realize what a mess had been created and got him back on his feet.
I ended up giving all of his records to an agent and making it the coordinator. It found a bunch of problems. He was being given the wrong pain medication on the wrong schedule, the moment that was fixed he felt a lot better (unfortunately he lost so much weight on the wrong schedule it's what got him in the end). They also use voice transcription software, which led to a key error about what genetic markers he had. Fixing this changed his treatment plan!
In general, I wish we had been much more aggressive with this. Last time we had a major medical issue an NP almost killed my wife. At the time there was no AI, so we just had to recognize things were in decline and start being aggressive about getting in with the right doctors (the moment we found the right one she was diagnosed, had surgery and was cured in weeks).
He started doing better when the AI became the central coordinator and doctors/tests/etc. became their inputs. It was an excellent advocate. And while we have science backgrounds, we aren't doctors. But it could present evidence for actions in ways that the doctors appreciated (his oncologist was impressed and called the AI a member of the team).
Unfortunately his physical reserves were very drained at that point. He probably would have had another 6-12 months with his family if it wasn't for the disorganized mess of a care system that we have.
I’m so sorry you’re dealing with this. One thing I would strongly suggest is look for the patient advocacy/advocate for the organization handling your dad’s care. They helped me in one case with my wife’s care, which unfortunately was beset with incompetence and indifference from the start.
Memorial Sloan Kettering is widely considered one of the best treatment centers for gynecological cancers, and they were completely useless for us. The Dr. spent about 15 minutes talking to us and reviewing the case, gave no advice, said nothing in favor of or against the current plan and just said to reach back out after the current treatment plan played out.
This was six years ago and I still can’t think about it much without raising my blood pressure.
Anyway, patient advocate and phone calls/office visits are about the only tools you have. It can be a full time job keeping things on track.
In the U.S., many hospitals have some sort of patient navigator or advocate. I’m aware of at least some insurance companies even offering such services (although I can’t speak to whether they are necessarily well aligned with patient interests). See if you can request these services.
A trusted family member is always a huge help at appointments: even if it’s infeasible to go in person, ask to listen in remotely. I’ve been in those shoes too.
Be overcommunicative, be the squeaky wheel: for our part, we know the difference between even zealous advocacy (great!) from disruptive behavior (not so great!).
Sorry, the system can suck. I promise you that every oncologist has had to make those unanswered calls too, so we do know something of this end of things. But you and your loved ones don’t deserve to suffer for it, so don’t be shy.
That last point is probably the hardest one to actually follow. When someone you love is sick, I imagine it's easy to turn every waking hour into researching treatments, chasing appointments and etc. It probably feels like doing anything less means giving up
Wouldn't you be able to just not tell that you already have a treatment plan?
Just because the second opinions did not disagree with the first, it does not necessarily follow that they were a waste of time.
I relate it wasn’t clear in my note. There were no second opinions provided. They basically refused to engage because treatment was already underway.
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