1. < Gynecologic Cancers

Pole mutation endometrial cancer lvsi

Posted by ald7519 @ald7519, Mar 27 2:33pm

Recently diagnosed with endometrial cancer had total hysterectomy stage 1a grade 2 with extensive lvsi and tested positive for pole mutation torn on treatment decisions radiologist reccomending 28 external beam treatments due to lvsi they can not treat based on pole mutation because no official guidelines out for pole positive patients as of now study still out
2nd option oncologist torn between vaginal brachytherapy or just monitoring
All literature suggests they are finding pole mutant cases are being over treated and have excellent out comes regardless of adjuvant therapy it says radiation is causing more toxicity to the body than needed i dont want to be left with all the radiation side affects if I didn't need it

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blanchette | @blanchette | Mar 27 3:20pm

Greetings @ald7519 . Welcome to the group. (I just joined a couple of days ago myself.) From everything I have read, POLE mutation is the endometrial cancer that has best outcome. Of course, we can't give medical/treatment advice here, but my research aligns with the research noted in your last paragraph. Only you can decide (with input from your medical team) how much/what kind of treatment you want to pursue. It sounds like you are on top of current thoughts in this area. If you want additional info before making your decision, there are a number of recent continuing medical education presentations on youtube. Lots of top experts talking about POLE mutation. I take naps with these presentations in the background. I now dream of immune checkpoint inhibitors. So many recent advances. Good luck with your decision.

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Mentor
Helen, Volunteer Mentor | @naturegirl5 | Mar 29 7:16am

@ald7519 Hello and welcome to our Support Group. Your initial post shows you did a lot of research. Hearing the word "cancer" is a huge shock. When I was diagnosed with endometrial cancer I got lost on my way home from my gynecologist's office by making a wrong turn on a very familiar route. I found myself in a neighborhood I didn't know existed and I live in a rural area where I thought I knew every town and neighborhood.

@blanchette raised some excellent points including you are the only one who can decide what treatment(s) you want to pursue along with the recommendations from your cancer care team. You are on the "right" track by questioning the treatment recommendations and figuring out the best course for yourself.

Did your oncologist tell you whether your "case" had been discussed at their local tumor board. This is a case conference where the specialists such as oncologists, pathologists, radiation oncologists, and gynecological oncologists get together in one room and discuss their patients. It's a collaborative approach where they will come up with recommendations.

Did you get your second medical opinion at a different medical center. Are you currently getting your care at a practice that is part of an academic medical center? For instance, Mayo Clinic fits this designation as does UC San Francisco and MD Anderson.

This is the website where you can request an appointment with Mayo Clinic at any of the locations (Minnesota, Arizona, or Florida):

-- http://mayocl.in/1mtmR63

Here is the list of the National Cancer Institute Designated Cancer Centers:

-- https://www.cancer.gov/research/infrastructure/cancer-centers/find

When is your next appointment? Will you see the first radiation oncologist again?

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1 reply
gisellef | @gisellef | Mar 30 8:58am
In reply to @naturegirl5 "@ald7519 Hello and welcome to our Support Group. Your initial post shows you did a lot..." + (show)
@naturegirl5

@ald7519 Hello and welcome to our Support Group. Your initial post shows you did a lot of research. Hearing the word "cancer" is a huge shock. When I was diagnosed with endometrial cancer I got lost on my way home from my gynecologist's office by making a wrong turn on a very familiar route. I found myself in a neighborhood I didn't know existed and I live in a rural area where I thought I knew every town and neighborhood.

@blanchette raised some excellent points including you are the only one who can decide what treatment(s) you want to pursue along with the recommendations from your cancer care team. You are on the "right" track by questioning the treatment recommendations and figuring out the best course for yourself.

Did your oncologist tell you whether your "case" had been discussed at their local tumor board. This is a case conference where the specialists such as oncologists, pathologists, radiation oncologists, and gynecological oncologists get together in one room and discuss their patients. It's a collaborative approach where they will come up with recommendations.

Did you get your second medical opinion at a different medical center. Are you currently getting your care at a practice that is part of an academic medical center? For instance, Mayo Clinic fits this designation as does UC San Francisco and MD Anderson.

This is the website where you can request an appointment with Mayo Clinic at any of the locations (Minnesota, Arizona, or Florida):

-- http://mayocl.in/1mtmR63

Here is the list of the National Cancer Institute Designated Cancer Centers:

-- https://www.cancer.gov/research/infrastructure/cancer-centers/find

When is your next appointment? Will you see the first radiation oncologist again?

Jump to this post

This is absolutely gold standard advice. The only comments I would add is do all of this quickly and do not be guided by insurance concerns or if in a public health system what the health authorities would dictate. It is your life and a second opinion from the most advanced sources of knowledge is not that expensive in the grand scheme of things. We often do not hesitate to spend on anything from vacations to home renovations but somehow draw the line when it comes to our health. If we are inclined that way we need to get over it. There is a very wide range in the quality of cancer care and if something doesn’t seem right or feel right search out the alternatives. Good luck and best wishes.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 31 5:05pm

@ald7519, I add my welcome. You may also be interested in this related discussion that @val64 started a little while ago.
- Was your endometrial cancer tested for mutations in the gene POLE?
https://connect.mayoclinic.org/discussion/testing-endometrial-cancer-for-mutations-in-the-gene-pole/

What are your feelings about active surveillance (monitoring)? What would be the trigger for starting treatment?

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