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"Lisa Steen: The wilderness of the medically unexplained" - GP with cancer misdiagnosed as psych.

Kyla

ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ
Messages
721
Location
Canada
http://blogs.bmj.com/bmj/2016/08/25/lisa-steen-the-wilderness-of-the-medically-unexplained/

excerpt:
This patient perspective essay was written by Lisa Steen. She has since died. We have permission to publish the piece from her husband, Raymond Brown.

I am a GP, formerly a trainee psychiatrist and now 43 years old. In July 2014, I was diagnosed as having kidney cancer with multiple bone metastases. The cancer was extremely rare, associated with a succinate dehydrogenase B (SDHB) mutation. This genetic condition was later also found to be the cause of my carotid body paraganglionoma which had appeared when I was 18 and was finally excised when I was 27.

I had felt unwell in terms of dizziness and visual symptoms since August 2012, and presented to my GP in September 2012, nearly two years before my diagnosis was made in July 2014. So I spent two years wandering in the wilderness of the medically unexplained.

In fact I had been feeling tired for several months even prior to this presentation in August 2012, and had felt like I was lacking concentration. I had been put on a series of antidepressants, each of which caused “side effects” which may have been symptoms of illness all along. Fluoxetine caused headaches, sertraline caused diarrhoea, and dosulepin caused visual disturbance—at least that’s what I thought at the time...
 
I am angry at being left in the medically unexplained wilderness and I did not like the way my colleagues looked at me, when they believed me to have health anxiety. If anyone of the doctors I saw had gone another mile they would’ve stumbled upon it. I almost told them the answer; I repeated over and over my belief of a genetic syndrome linked to the carotid body, something related to it, but they were unable to hear the answer from a patient. They were reluctant to lay their hands on and examine a fellow medic. I was disappointed in finding a very poor appetite for a diagnostic hunt, which may in part be the result of protocolisation and superspecialism.

And if she had that experience, what are the chances of us mere mortals getting decent treatment. :mad:
 

PennyIA

Senior Member
Messages
728
Location
Iowa
I have heard repeatedly that 'something' was impossible, when in fact, it was rare.

In my lifetime, I've experienced 4 medical things that were previously deemed 'impossible' to me or too rare to bother testing me for it, but found after escalating and pushing doctors pushed to do their jobs.

1) at six they found a pocket of skin in my throat (I was six, I'm sure there was a medical term for it, but this is how it was explained to me) (1 out of 200,000 chance)
2) Protein C Deficiency (occurs less than .02% of population) causing blood clots
3) B6 toxicity on 50 mg per day of B6 (no idea, I honestly think this is underdiagnosed because doctors don't test for it until you force them to)
4) My cervix & ovaries were left in after my hysterectomy - and they've decided that the cervix can grow an endometrial lining and function as a miniature uterus (not sufficient to carry a baby to term, but in fact, dangerous because I can have an ectopic pregnancy now post-hysterectomy).(like 1 in a million shot here)

It's great that doctors were given the analogy of 'when you hear hoofbeats, it's probably a horse and not to go looking for a zebra'... BUT what they are missing is that when the treatment doesn't work and you don't know what it is? NOW you start looking for zebras. They may be rare, but you can't rationalize rare as being non-existent.

Oh, and stats for this? Came from doctors who were 'astonished' (and quite pleased with themselves) when they found the items or discussed it later in life.
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
It's great that doctors were given the analogy of 'when you hear hoofbeats, it's probably a horse and not to go looking for a zebra'... BUT what they are missing is that when the treatment doesn't work and you don't know what it is? NOW you start looking for zebras. They may be rare, but you can't rationalize rare as being non-existent.

Even with less rare conditions, it seems to me the lesson of this tragic story is that the psychologized conception of MUS is quite unlike any other misdiagnosis.

If a doctor thinks you have a heart problem when in fact it's your liver, chances are that doctor is eventually going to realise their mistake during attempts at treatment.

But if a doctor thinks you have a somatisation disorder, they're probably never going to change their mind — anything that happens with you can be conveniently 'explained' by your psychological disorder.

That's what's so damned pernicious about the whole MUS/somatisation thing. Once you're filed in that category, the doctor who put you there is never going to let you out, except perhaps at autopsy.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I am reasonably sure this is the second thread on this, the first one dating back several years. These kinds of things occur far too often.

If doctors would only treat the unexplained as unexplained, or not yet understood, or something similar, instead of trying to force misleading labels on things, then I think things would be much better. Claims to psychogenic illness much more resemble a cultish religion than science. Its become a convenient too hard basket.

That doesn't just mean too hard for the doctor, its also about it being too costly for those paying the bills. Its a false saving to sideline patients though, the secondary consequences probably cost society far more. To be clear, its a false saving to society, but it can look good on a minister's report, or to the CEO of an insurance company. Its another case of passing the cost onto the rest of society. Its a case of denial being profitable.
 

Kyla

ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ
Messages
721
Location
Canada
I am reasonably sure this is the second thread on this, the first one dating back several years.

I don't think it could be the same article as this one was published today. And she talks about getting her diagnosis in 2014.

Doesn't surprise me that there have been similar stories published
 

GreyOwl

Dx: strong belief system, avoidance, hypervigilant
Messages
266
I thought it was a tragic story and a powerful article. There was one part that didn't sit right with me:
Mine is a cautionary tale to those treating health professionals, and those of us who are unwell—doctors do get ill, they don’t always know what is wrong with themselves: give them a class A service because it is actually harder getting treated as a doctor than a lay person.
I just do not believe that is true.
 

Richard7

Senior Member
Messages
772
Location
Australia
I thought it was a tragic story and a powerful article. There was one part that didn't sit right with me:

I just do not believe that is true.

I have to agree: there are lots of workplaces that expect people to work too hard; there are lots of workplaces that treat those dealing with chronic illness, particularly mental illness, poorly; most people earn less money and have no chance of going private; and the vast majority lack the expertise to try to work out what is wrong.

Having said that: people should not be working themselves into the grave, etc etc and her story of course is terrible. The problems she notes exist, she is just wrong in thinking them peculiar to her profession, though I imagine that idea might be one that the doctor's reading the article can get behind..
 
Messages
15,786
That's what's so damned pernicious about the whole MUS/somatisation thing. Once you're filed in that category, the doctor who put you there is never going to let you out, except perhaps at autopsy.
Oh, I think there's plenty who would still be claiming there was also a psychosomatic factor, especially at the autopsy. They've contributed to the death of a patient, and they need to find a way to justify that. It's been my observation that ones who will propose and believe a psychosomatic disorder are not much into self-reflection or examining their own errors.
 

garcia

Aristocrat Extraordinaire
Messages
976
Location
UK
I love the way they turn the story into how tragic the situation is for doctors, rather than how tragic the situation is for patients! The fact she was a doctor seems to have blinded her to the fact that patients are treated this badly (and die as a result) all the time. It's normal for us. Only when patients aren't doctors they don't get to have posthumous blog articles published in the BMJ, because the BMJ only cares about doctors not patients.

Let me just take one paragraph:

>"The communication was different, it didn’t go the same way that it would have if I was a non-medic."
Really? So doctors treat other doctors worse than they treat lay-people? I find that very difficult to believe.

>"Doctors do not like being told what to do, and if you try obliquely they don’t notice."
This it true, but doubly so when the person doing the telling doesn't have a bit of paper certifying that they wasted 7 years of their life in medical school memorizing as many unrelated factoids as possible so they can pass the next exam.
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
Oh, I think there's plenty who would still be claiming there was also a psychosomatic factor, especially at the autopsy. They've contributed to the death of a patient, and they need to find a way to justify that. It's been my observation that ones who will propose and believe a psychosomatic disorder are not much into self-reflection or examining their own errors.

I did say 'perhaps'!
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
I love the way they turn the story into how tragic the situation is for doctors, rather than how tragic the situation is for patients! The fact she was a doctor seems to have blinded her to the fact that patients are treated this badly (and die as a result) all the time. It's normal for us. Only when patients aren't doctors they don't get to have posthumous blog articles published in the BMJ, because the BMJ only cares about doctors not patients.

Let me just take one paragraph:

>"The communication was different, it didn’t go the same way that it would have if I was a non-medic."
Really? So doctors treat other doctors worse than they treat lay-people? I find that very difficult to believe.

>"Doctors do not like being told what to do, and if you try obliquely they don’t notice."
This it true, but doubly so when the person doing the telling doesn't have a bit of paper certifying that they wasted 7 years of their life in medical school memorizing as many unrelated factoids as possible so they can pass the next exam.
Hello - not seen you around in a long time! I totally agree with your analyses of this.

Most of this story sounds very similar to what I have experienced. I still, like most of us here, have no idea if I have something very rare or even life threatening - No GP makes any effort at all once you have anxiety on your notes...
 

Dolphin

Senior Member
Messages
17,567
The psychiatrist made a diagnosis of depression and health anxiety.

I did not entirely believe my psychiatrist however, mainly because the visual symptoms were so florid. I considered myself very psychologically aware and was not convinced about the anxiety/depression diagnosis. Though, unfortunately I had proved a highly suggestible subject during the cognitive behavioural assessment, due to having been trained in CBT myself.

The symptoms did indeed get worse with stressful situations, but this was partly because those situations occurred whilst standing—such as presenting patients on the morning ward round
Looks like the CBT didn't help her.

Also

I spent the next few months trying to address my apparent mental health problems with a psychologist, and I mainly considered myself to have a psychosomatic illness maybe some sort of conversion disorder. Unusually, I worked backwards, as it were, to exclude a psychiatric illness so as to realise I had a medical illness.

But I gradually became convinced that exertion and not anxiety caused the visual symptoms to worsen, I also thought that the nature of the symptoms “felt” organic because of the pronounced and ongoing visual symptoms.
 

Dolphin

Senior Member
Messages
17,567
I then started to look for threads, clues, and a way forward to get treatment. This was thwarted by my earlier diagnosis of health anxiety and having medically unexplained symptoms. One could not be dogmatic in further requests for investigations for fear of looking even more “anxious” or suffering from “health anxiety,” aka a hypochondriac.
 

Dolphin

Senior Member
Messages
17,567
The cardiologist was a kindly man, but after exclusion of any cardiac conditions with an echo and 24 hour tape he began to consider the initial health anxiety diagnosis—or at least it looked like that to me. Once again a kind of consulting room glazing occurred and I was left once more looking like a goldfish. My mouth moving but no sound conveyed to the doctor’s ears. This was by now a familiar feeling to me.