Ragged Clown

It's just a shadow you're seeing that he's chasing…


Jul
5
2022

Google versus doctors

I came across yet another of these complaints yesterday from a doctor in the brain tumor discussion group on Twitter.

I won’t embarrass the doctor who posted it but every time I see one of these tweets I shudder a little and thank the heavens that they are not my doctor.

Look, I help to run an online community for patients so I am well acquainted with the people who google “My toe hurts” and end up thinking they have a sarcoma. Smart Patients also gets its share of covid conspiracy theorists who think that the vaccine was all a plot concocted by Bill Gates and the Deep State because of some looney video that they saw on InfoWars. At times, during the pandemic, the kooks and the conspiracists threatened to overrun our ramparts but we survived.

But most people who google their condition are not like those people. When you dismiss my concerns out of hand, you remind me of a certain old-fashioned kind of doctor.

Do doctors learn Aristotle’s Doctrine of the Mean in medical school? Or are they just trained to dismiss patient concerns because the doctor always knows best? Surely there is a middle ground between these two extremes.

e-Patient Dave says it best:

It’s absolutely, demonstrably wrong for a doctor to think that doctors know everything that needs to be known and patients can’t possibly know anything useful. To the contrary, not googling can bring death.

e-Patient Dave at the Society for Participatory Medicine

Most people, when they are first diagnosed with a serious condition, are ignorant, confused and afraid but most learn quickly that there is knowledge in online communities that doctors don’t have access too. Our role as patients is not to find all the answers; it’s to learn enough to ask the right questions. An online community where you can meet other patients who have walked the path that you are on can help you ask the right questions.

An online community for patients and their families.

Let me share some examples. Before my first meeting with my neurosurgeon after my glioma diagnosis, I googled a bit.

I learned that the standard of care for a low-grade glioma was 1) surgery to remove the tumour then 2) a biopsy and, depending on the molecular profile of the of the tumour, 3) radiation followed by 4) chemotherapy. I also knew that the type and effectiveness of the chemotherapy would be determined by the presence of certain mutations and biomarkers. For example, PCV is more effective if you have the 1p19q codeletion while TMZ is easier to tolerate for most patients.

The neurosurgeon recommended that we start with a craniotomy and resection (surgery to remove the tumour) and a biopsy of the tumour would inform what to do next. I asked about the likely deficits from surgery. I’m rather fond of my brain and I would rather not damage it if possible. According to this study, 41% of craniotomies result in neurological deficits such as the inability to speak or walk after surgery, palsy and weakness in the arms. Most (but not all) deficits recover within 3 months of surgery.

I asked if it were possible to biopsy the tumour without a craniotomy. The neurosurgeon said that a needle biopsy was possible but they were very unreliable because of the heterogeneous nature of low-grade gliomas (different parts of the tumour might have different mutations). He said it would be better to do the resection first and biopsy the full tumour.

I asked about the possibility of chemo and he said it was way too early to talk about chemo and, anyway, the chemo for brain tumours is nothing like what I probably imagined. He also made a kind of wave to emphasize that my question was stupid. I googled to find an accurate representation of his wave of dismissal. It was just like this.

I asked for a second opinion but my nurse told me that it’s unlikely that an oncologist would agree to see me without a biopsy.

By the time of our second consultation, I had read just about every paper on Pubmed about low-grade gliomas (LGGs). I learned a lot about how the Extent Of Resection (EOR — how much of the tumour is removed by surgery) has a big impact on expected survival times. 100% EOR is ideal and survival drops off quite rapidly when you get down to 80% EOR. At some point, you have to wonder if the pain and problems of a craniotomy are worth the extra few months that surgery buys you. At least, I wondered about it and I asked my neurosurgeon.

Me: Can you guess at the expected extent of resection from the MRI?
NS: Hmmm… 20%…50% maybe…
Me: Then why are we talking about resection at all?

I asked again for a second opinion and my nurse set me up with the lovely Dr XX. She agreed with me (and Dr Google!) that surgery with 20%-50% resection did not sound like a very good deal. She agreed with me (and Dr Google!) that radiation was probably not possible. She also agreed with me (and Dr Google!) that a needle biopsy was a good next step. The tumour board agreed too.

I’ll share one more example of doctor vs google and then I’ll rant a bit about why things are the way they are.

I was surprised to learn that my smell hallucinations were actually a kind of epileptic seizure. I googled.

Epilepsy is a clinical diagnosis. As with any other seizure, it is most important to make sure that the episode is truly a seizure.

Before deciding on treatment, a doctor will need to confirm that a person is having complex partial seizures. The doctor will need as many details as possible from the person having the seizures as well as from someone who has seen these episodes on a number of occasions. The doctor will need to know what happens before, during, and after each episode.

If a doctor suspects a complex partial seizure, they will usually order a diagnostic test to confirm.

https://www.ncbi.nlm.nih.gov/books/NBK519030/

Everything I read online about complex partial seizures says that seizures are transient: they have a beginning and an end.

A seizure happens when electrical activity in the brain surges suddenly. The brain and body are affected in different ways depending on where the activity occurs. Epilepsy is a condition that is linked to seizures.

Complex partial seizures (CPS) are the most common type of epilepsy in adults. These seizures can last between 30 seconds and 2 minutes.

https://www.cedars-sinai.org/health-library/diseases-and-conditions/c/complex-partial-seizures.html

The main symptom of epilepsy is repeated seizures. These are sudden bursts of electrical activity in the brain that temporarily affect how it works.

https://www.nhs.uk/conditions/epilepsy/symptoms/

I asked my neurosurgeon if it was possible that my phantom smells were not actually seizures since they are not transient. They last from the moment I wake up in the morning to the moment I go to sleep at night. He did that wave thing again and said we can increase the dose of my anti-seizure medication to make them go away.

I told my lovely specialist nurse that the anti-seizure medication is now giving me unpleasant side effects and that I still doubted that my seizures were seizures. She emphasized that the neurosurgeon says they are seizures. Mrs Clown asked if it’s possible to confirm that they are seizures by EEG. The Lovely Nurse said they don’t usually do that because it’s quite common for gliomas to cause seizures but she did refer me to a nurse who was a specialist in epilepsy.

The epilepsy nurse said that the information I read online was wrong because the doctor said I was having seizures. She prescribed another anti-seizure medication. I imagined her doing a little wave over the phone.

Now I am taking two medications to prevent seizures that I don’t think I am having. I don’t really care about the seizures — there are worse things than phantom smells — and maybe they really are seizures. Maybe these medications will save me from The Very Big Seizure that will bring my story to an end but, if we are using the presence of seizures-that-might-not-be-seizures to determine whether the medication is working, surely it’s worth figuring out whether or not they actually are seizures first.

I mentioned this to Dr XX and she said “Hmmm. They don’t sound like seizures to me either. Let me refer you to the Chief of Epilepsy who specialises in brain tumour-related seizures. He’ll figure it out”. Anyway, here we are a few weeks later and I have not yet been referred to the Chief. Mrs Clown called to follow up and the Lovely Nurse referred us back to the epilepsy nurse. I already know what she will say. I wrote it on a piece of paper. After she calls, I’ll tell you if I got it right.

I’m a little bit shocked that things are the way they are. Treatment for brain tumours has barely changed in almost fifty years. There’s no evidence that resection helps with diffuse low-grade tumours like the one I have but the standard of care says to do the resection anyway. The chemo for certain LGGs is PCV. The V stands for vincristine. A bit of googling says there is mixed evidence about whether vincristine crosses the blood-brain barrier and whether it has any effect on gliomas. As far as I can tell, oncologists give vincristine because they have always given vincristine. No one ever thought, until now, to test whether it does any good.

However, the various and severe toxicities of this treatment, including hematologic toxicity from lomustine and peripheral neurotoxicity from vincristine, often result in its reduction or discontinuation in glioma patients. In addition to its toxicity, vincristine is composed of relatively heavy molecules (825 Daltons), and concerns exist about its successful crossing of the blood-brain barrier.

Clinical feasibility of modified procarbazine and lomustine chemotherapy without vincristine as a salvage treatment for recurrent adult glioma

Maybe a little bit of googling would help fill in the gaps of a medical degree after all. As a patient, I don’t want to tell you how to do your job but I would like you to listen to my concerns and answer my questions. If I’m wrong about something, I won’t be offended if you tell me I am wrong. I’ll be annoyed if you just wave me away though.

Prequel

I’m the kind of person who does not go to the doctor unless I am sure that

  1. The condition is serious.
  2. I think the doctor can do something about it.

I explained this to the doctor who treated me for back pain when I could barely walk. She said she had no idea what caused my pain but she prescribed me some horrible medication.

“Will it do any good?” I asked.

“**shrug**” she said.

I didn’t take the medication.

Among the things that I thought were serious enough to see my doctor in California about are a grand-mal seizure, violent, vomit-inducing vertigo, restless leg syndrome, and a sex headache (google it — they are quite unpleasant). Maybe it’s just a coincidence that I had five serious neurological symptoms just before my diagnosis of a brain tumour but my doctor told me to stop googling things so we’ll never know.

Here’s Dave again.

It’s absolutely, demonstrably wrong for a doctor to think that doctors know everything that needs to be known and patients can’t possibly know anything useful. To the contrary, not googling can bring death.

e-Patient Dave at the Society for Participatory Medicine
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10 responses to Google versus doctors

John Dowling July 5, 2022

Hello Kevin
I know Kevin I am a pain in the arse, however I imagine you are exploring every avenue you can, after reading your message I was surprised that you have not mentioned proton therapy, my understanding is that it can shrink the tumor and minimize any damage to healthy cells.

Bonne courage my friend
I wish you well
Johnboy France

Robin Martinez July 5, 2022

You make me thankful that the vast majority of Kaiser doctors are open to patient input. It is part of the Kaiser philosophy. Rocky Mountain Kaiser lives it.

(In fact I actually diagnosed a problem of my late husband’s. The PCP had gotten nowhere over the course of several weeks. I had an idea: Because the intestine shuts down if any foreign object touches it, I surmised something from an earlier surgery was touching the intestine. The PCP listened and sent me to consult with the surgeon. The surgeon listened, agreed, and operated. It turned out to be the correct solution. You can’t beat that for listening to the consumer and responding positively!)

    Ragged Clown July 6, 2022

    I wonder if maybe surgeons get to skip the class on answering patients’ questions.

      Robin Martinez July 6, 2022

      I think that’s true of many surgeons – “Don’t bother me, you’re the patient – let’s get cutting! Who said YOU get a vote?” Surgeons are notoriously not “people persons,” above all very sure they’re right.

      But the Kaiser surgeons I’ve interacted with – six so far, for me, my husband, and my son – have been warm, understanding, explanatory, and very willing to discuss.

      Again, it’s the Kaiser philosophy that patients should take an active role in their own health and that the healthcare team is there to assist with that. It helps that every doctor is part of a unified system of service with great communication within their system and lots of support staff. Everything under one roof.

      Of course, this fits a certain type of patient best. I was surprised to hear two ladies discussing MY surgeon out in the waiting room. They didn’t like him at all. This was the same surgeon who had just shook my hand on entering, explained everything, laughed with us, wowed us with his knowledge and warmth. I wondered what their experience could possibly have been.

      My son’s tricky gallbladder case may be illustrative. Everyone at every visit, including the young and personable surgeon, told us they couldn’t be sure it was the gallbladder causing his problems – important signs were missing. But it was a likely culprit, the operation is considered simple and common, and it might solve some of the issues. With luck, all of them.

      Lots of patients might prefer to hear, “This is the problem; you just relax and leave it to me.” But in reality, medicine is rarely that simple or sure. We never got that “pat you on your little head” treatment, and we didn’t want it. We wanted to know enough about everything, its background and rationale and the options, to make the best possible decision.

      My son decided to have surgery, and it fixed everything. Once it was removed, the gallbladder showed things the scans and tests hadn’t been able to reveal. His unguaranteed decision turned out to be right for him.

      That’s what doctors and surgeons face every day, whether they put on a show of certainty and reassurance or treat you as an equal and level with you. It’s a surprise to some MDs that many patients today insist on the latter. No more “medical deities” for the Smart Patients! Rather, colleagues united for a cause.

      (I should mention that Rocky Mountain Kaiser Permanente is the top-rated Kaiser system. Within it, it helps to be an inquisitive and proactive patient – or as many doctors outside Kaiser still say, pushy and difficult. The difference in attitude is huge.)

      Kevin, you’re seeing how hard and unpopular it is to be that patient; but it is worth the effort. As others have said, stand your ground!

Janet July 6, 2022

My experiences are more like yours than Robin’s. I don’t know why more people don’t talk about the loss of innocence that comes for some of us with repeated encounters with the medicoindustrial complex. The slights and disappointments and failures to communicate add a challenging layer to a situation that is already emotionally and physically and mentally draining.

Like you, I know what kind of person they are thinking of as they wave off your contributions to the discussion. You are not that person. So keep it up. As Robin’s comment makes clear, sometimes you have to do their work for them. It sucks but I think many in the med biz are winging it through their days, with few opportunities afforded or taken to consult with their colleagues or whatever online oracles their respective institutions have subscribed to.

Re: the glitches in exchange of information between departments, clinics, practitioners, labs. Failures in communication are the norm in my experience. Lab reports, referrals, treatment plans, appointment requests go astray, fall through the cracks, insert your cliche of choice here, with disillusioning regularity. I found it helpful during the intense years to think of the communications process as a machine–a machine that nobody is paid to monitor. Unfortunately that means you have to monitor it yourself. You may need an admin assistant to make follow up phone calls for you each week–just half-joking there.

My PCP gave me a printout once about a topic that I apparently had asked so many questions about he decided to just print out his reference material for me to take home and read. A key to the secret source of knowledge. Turns out it’s called UpToDate, clinics pay big bucks for subscriptions, and there is an option for regular folks like us to purchase relatively inexpensive short-term subscriptions. Once or twice a year I buy one so I can see if there’s any new info about my topics of interest, and to sneak preview what my doctor is going to tell me when I go in the next time. Gives me a chance to figure out my questions, do additional research, ahead of time. This is not how I pictured the doctor-patient relationship as being, but nothing about it is as I expected when I first “started in with doctoring” as my grandpa described it. He warned us all. And that was fifty years ago!

Hang in there! You likely know more about your tumor, symptoms, and big-picture standard care and treatment info than anyone you will encounter. Sorry ’bout that, but I hope that will give you confidence and motivation to keep schooling them on it.

    Ragged Clown July 6, 2022

    I think the established communities on Smart Patients like RCC, MM and EC are good at monitoring what comes out of ASCO etc so you are likely to hear of any interesting news. The brain tumour community is not quite there yet, unfortunately.

    The #btsm group on Twitter was a-buzz this week with the results of a trial that demonstrates success with a target therapy if you have a particular BRAF mutation but that is the first real advance in years.

Ragged Clown July 6, 2022

> the Lovely Nurse referred us back to the epilepsy nurse. I already know what she will say. I wrote it on a piece of paper. After she calls, I’ll tell you if I got it right.

Epilepsy nurse called. I got it right.

    Robin Martinez July 6, 2022

    “Second verse, same as the first.” Predictable indeed.

    If your lovely oncology consultant is willing to push for you, the epilepsy expert may yet weigh in on your situation despite the neurosurgeon’s supposedly infallible dictum.

    Push her to push for you? ? Good luck!

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