Sometimes I just want to ramble about something and don’t know where to put it… so I’m putting it here. I feel like it’s so confusing trying to track my health. tl;dr because I’m too tired to go into TMI right now but basically I’ve been diagnosed with two genetic disorders which are sort of the same thing? They’re mutations of the same gene, but two different diagnoses, that are sort of like saying the same thing but one is more rarely diagnosed than the other and they have slightly different risks. Anyway, I’ve known about the one diagnosis since my way early 20’s when I got genetic testing. I learned about the second one only about 5 years ago maybe? If that?
I’ve had to do regular preventive screenings every 1-3 years because I forgot to mention my genetic mutation basically 100% causes cancer. It’s less a question of if and more a question of when. I was born with the mutation so I can’t really do anything about it. It’s definitely something you can live through if you catch it early enough and if you get major surgery to remove an organ. Any kids of a gene mutation carrier is 50% likely to be born with the mutation as well, and I have a big family, so lots of people in my family have already gone through the same. Each generation, for some reason, it seems like the mutation becomes more dangerous a decade earlier. So like, my grandma I think got all the shit in her 50’s but fought it off and then later didn’t. My mom’s generation mostly got the surgery in their 40’s. My generation is 30’s.
Where I differ is, at 35, I’m already 3 years older than my brother was when his doctor rushed him to surgery upon diagnosing him. He already got the surgery. I’m actually not sure about my cousins; I tend to know more about my aunts and uncles and mom. But the thing is, every time I had my screening, they said I was mostly fine.
What worries me is I’m overdue for my latest testing. I should’ve gone in at least 1 year ago, if not 2, but I didn’t get notified by my doctor and didn’t realize it had been so long. I only found out because this other doctor I recently started seeing at a new clinic for a totally unrelated (I thought) matter, actually gave a shit about me and asked me lots of questions and looked at my history and told me I was overdue.
So here’s where we’re at now and why I’m in a rambling mood: I’m feeling overwhelmed trying to find a new doctor. Not the great dr I mentioned; I mean one for the screening. The one I had before is fine but I’m realizing he isn’t actually that versed in my specific mutation and genetic issues, and I probably should be seeing someone who knows a bit more about it. He definitely is aware, but he just never really talked in detail about things with me.
So anyway I was recommended this site that tells me a list of medical professionals who are more versed in my specific semi-rare mutation, and it’s a short list, but somehow it’s so hard deciding between people. I thought I knew who I wanted to go to at one hospital, then I looked at the hospital I want to go to and I found a lady there who seems great, and then at a THIRD hospital there’s ANOTHER lady who seems super versed in genetics too. And I’m like, where do I go??? This is the first time in my life I’ve found multiple options of people who may know wtf is going on with me.
The one at the hospital I want to go to seems like she might be good because she has some overlap into other areas I need checked as well, plus she’s part of the same group as the doctor I love, so sharing information would be super easy. But there’s also this lady with the second hospital who’s basically exactly aware of my specific issues and is way versed in genetic clinical nurse capabilities, and I used to go to that hospital years ago back when I first got genetically tested. The third hospital is one I’ve never gone to except for eye things.
I’m feeling overwhelmed, not knowing which is the right choice.
I suppose one way to do further research is determine if there will be a price difference between them, and find out which of them can do the screenings I need, and more. Or I could go to the genetic clinical nurse lady, find out everything I need to have the dr at the hospital I like do, and give them permission to talk.
What’s making me hesitate is I didn’t always have great vibes from the hospital with the well-versed lady, so I kind of don’t want to go back?, meanwhile the new hospital I love saved my dad’s life through early cancer diagnosis and treatment. But the new hospital doesn’t seem to have a whole section devoted specifically to mutations like mine and especially at my age I probably really need someone who knows what’s what.
I’m just rambling, I know… trying to figure this all out seems like so much to me, even though I know it’s dumb.
Also a big problem is my insurance has always billed me full price for the preventive procedures and that’s expensive AFFFFFF so I’m trying to figure out how much I can even afford. New hospital was really helpful trying to help me with coding in the past but I still got hit with a massive fucking bill 10 mos later. Old hospital never did jack shit to help but I don’t remember if I had to pay. Interim doctor I went to who is independent always cost me $2000 each procedure.