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this post was submitted on 04 May 2025
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The arrogance of some doctors can be scary. I used to be a clinical genetic counselor, a job specifically designed to focus on working with doctors as a genetics specialist so that they don't need to know all the intricacies of that on top of everything else. Most doctors I worked with hated me, and saw me as a distraction from work they could handle on their own.
One time a doctor went over my head to order a genetic test for a patient who had a very strong family history of breast cancer. He didn't refer her for a genetic counseling session, which was the protocol so that we could explain to her her own risk and the potential positive result, and give her the option to make an informed choice about whether or not she wanted testing at all. He just offered her the test out of the blue and, not really knowing what it meant, she just accepted by default. Not only did she test positive for a BRCA1 mutation, increasing her lifetime risk of developing breast cancer to over 90%, but the doctor incorrectly interpreted the results of the test, and believed she tested positive for breast cancer itself.
I only learned about the patient because the doctor mentioned her nonchalantly during a review meeting, and I had to correct him about the results of the test and convince him to refer her to me. I think the only reason he agreed was because he was put on the spot in front of the whole oncology department. I was lucky that the doctor hadn't yet incorrectly reported to the patient that she had breast cancer, but I still had to inform this woman, who barely understood why she was here, that she'll likely want to start scheduling yearly mammograms right now, or even consider a mastectomy, while she was still in college. That was the most difficult day of my short time in the field, and a big reason for why I ultimately left.
You know what they call the worst doctor in the class right? Doctor.
From the few people in my vicinity that went to med school (not US), not a lot of emphasis is put on the human side of medecine.
If the worst doctor in the class is good enough to get a license and has great bedside manners, I'd rather have him than a better doctor with a terrible attitude
In the US, another aspect is that the entire medical school system is set up to make it extremely difficult for people who are not already from wealthy families to become doctors.
The US underfunds residencies (due to lobbying by doctors who want to keep their wages high through scarcity). Because residencies are required to become doctors, this limits the number of people who can be let into medical school. Because the numbers are artificially (and harmfully - doctor shortages are ridiculous in rural areas) kept low, admissions also are kept low.
This creates an ultra competitive process where it’s about maintaining as close to a 4.0 GPA as possible while stacking up volunteer hours. (Eg - your best chances are when you don’t have to work, other than some dalliances with scribing.)
I really wanted to be a doctor at one point, but I realized that I would never be a competitive candidate against someone who wasn’t working and had parents paying for tutoring.
I am confused. Outside of not following the rules and reading the test results incorrectly, it sounds as if him giving her the test was a positive thing? Isn't it good that this was caught early? Sorry, maybe it's how I am reading it, but you sound upset that she even received this diagnosis. I also get that the end doesn't justify the means, but it sounds like catching this early can really help her life long-term.
Oh, no, the diagnosis isn't the bad thing, the process by which the patient received it is the bad thing. Genetic testing is a big decision, since it not only affects the patient's entire life, but also the lives of their family members. It's not something you want the patent to suddenly be informed of out of the blue without even fully understanding that they were being tested in the first place. This patient had no time to prepare for the possibility that she could have a high lifetime cancer risk, and didn't even know what that would mean until she already had the result.
This woman went from a normal college student with normal worries to someone who now has to worry about whether or not she wants to risk keeping her breast tissue to maybe one day breastfeed a baby, or simply feel like herself when she looks in the mirror. She has to think about whether she wants to have kids at all because they'd have a 50% chance of inheriting the same mutation. Every time she touches her own breasts for the rest of her life she's going to be scared that she feels a lump.
It's good that she got a diagnosis, but a lot of people choose not to, or at least choose to have it at a time when they're ready to focus on it, and this woman was denied that. She could have simply gotten more mammograms without testing right now, for example, because her family history put her in higher risk in its own. She wasn't even given a heads up that she might be thrust into this reality - the doctor was thinking about her physical well-being, but ignored her mental well-being. That's what the genetic counselors are supposed to be there for, but he ignored us, and the patent suffered for it. A woman walked into my office thinking everything was fine, and walked out with a world of worries on her shoulders.
I can’t imagine having to tell a young person they were a carrier for Huntingtons. That sounds like a brutally difficult thing to do.
Anecdotally - I’ve heard that a lot of genetics classes won’t have students test themselves, not just because “surprise! you are extremely likely to die of cancer” but also “surprise! you were assigned female at birth but are XY” wasn’t appropriate in a class. Can you speak to that?
That “do you really want to know” question is a lot harder than people think - I did 23andme a few years ago and found out that my mother had been lying about my father for almost thirty years. I was apparently enough Native American the entire time, I could have qualified for college scholarships :(
This makes sense! Thank you for explaining. As someone who works in the medical world, but in IT, I know of this position. Where I work they are called genetic counselors and are very sought after. So much so they were the first department to ever allow remote work because it was impossible to find a team local. I wanna say half the staff worked out of Canada as well. I knew the jist of what they did, but this shines even more light on it.
That's... not true, at least not in 2017 when this happened. Yes, a double mastectomy is an available option, and is the one most commonly taken due to the high risk, but another option, at least in the US at the time, is to have yearly mammograms. Often women want to keep their breasts until they have children and get through breastfeeding, then have a double mastectomy as well as an oophorectomy due to the high ovarian cancer risk that also comes with a BRCA1 mutation. I haven't kept up with recommendations since leaving the field in 2019, but at least back then, there were more than one option, and I'd be surprised if it's been constricted to a forced double mastectomy since then.
Ah, you're talking about the news story. Sorry, since you replied to my comment, I thought you were talking about the story I shared, which is of a different person. The woman from the news story wasn't diagnosed with a familial cancer condition like a BRCA mutation. Also, it's important to note that while a double mastectomy would definitely be recommended in the case of a BRCA1 mutation, ultimately the patient obviously gets the final decision on what they go with. It's important to offer it, of course, but it's not something to be forced on a person, regardless of the benefits. People have more going on in their life than what a doctor sees in their office, and can sometimes have something of even greater importance going on at the moment. Treatment is always a discussion to have with the patient, not a decision made on their behalf.