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@val64

I did manage to get a POLE mutation test on my tumor by having it sent to Stanford ($450 as of Sept. 2022; I didn't mess with trying to get insurance to pay for it). This is the only place in the country that I could find that is advertising a single gene test for POLE and is interested in taking outside specimens.

However, most academic medical centers sequence POLE as part of a "next-generation sequencing panel", where they sequence dozens to a few hundred different genes in a single test. I would have rather had a sequencing panel done, but it took a long, educational investigation to figure out how much this would cost if insurance wouldn't pay for it (which they almost certainly wouldn't at my stage. Insurance is more likely to pay for a sequencing panel for advanced or recurrent cancers such as @mimito6's. I know this kind of thing because I'm a molecular biologist who used to work in a lab that did these panel tests.).

The hospital where I'm being treated has a "price transparency" spreadsheet that lists the cash price for such a panel at well above $10,000. I contacted the lab (which you're not supposed to do as a patient, but I was super-frustrated), and eventually they got back to me and said that I could self-pay for the panel for less than $1000 if the correct procedure was followed. So much for price transparency.

Anyway, my POLE test was negative, which is not the good outcome, so now I have to decide what to do.

I'm interested in what people think. My tumor is a Stage 1B, FIGO grade 3 endometrioid endometrial cancer. My current Dr. has recommended 3-6 cycles of chemo plus vaginal brachytherapy. I'm scheduled to start chemo next week. My insurance won't cover a second opinion at any of the very highly rated non-local hospitals, so I got a second opinion at the second large local hospital system, and they recommended pelvic radiation therapy; no chemo. I have an appointment for a 3rd opinion at a cancer center belonging to a third local hospital system next week, less than 24 hours before I'm scheduled to start chemo. I'm planning to decide for certain what to do after that, but am currently thinking that I will go ahead and start chemo.

What do you think has fewer long-term side effects? Chemo or pelvic radiation? I'll put up with the short term side effects, but would rather not be dealing with peripheral neuropathy, lymphedema, urinary, bowel problems, etc. for the rest of my life.

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Replies to "I did manage to get a POLE mutation test on my tumor by having it sent..."

Chemo. I am suffering from radiation side effects since I had my radiation + vb. I have a lot of small intestine cramping and diarrhea due to the effects of radiation. I am now on TPN for my nutrition because I am unable to eat due to the damage to my intestines done by radiation. Chemo was a piece of cake compared to this.