How to handle 3 conflicting pathology reports?

Posted by delizzr @delizzr, Mar 12 1:46pm

Hello all,
I am 54. Diagnosed with p53abn, POLE negative, pMMR, ER/PR positive endometrioid adenocarcinoma after hysterectomy in January. Since then, we have been waiting on genomic testing and a third path report (the first 2, from a local hospital and then Stanford). Genomic testing indicates LOH, PikC3a positive, loss of PTEN.

The path reports disagree on grade (either 2 or 3) and myoinvasion (none, minimal, none, but tumor involvement of leiomyoma. As the presence of myoinvasion seems to be the ESGO... criteria for suggesting adjuvant therapy or not, I'm not sure where to go from here. Any advice is appreciated.

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

Profile picture for delizzr @delizzr

@inquirer Thank you! I'm thinking of trying to get a referral to Mayo because I have other complex conditions. I appreciate you taking the time to share.

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@delizzr I thought I would check back in with you. Have you decided on whether you will go ahead with the referral to Mayo Clinic? Or anywhere else?

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Profile picture for inquirer @inquirer

I came here to suggest you assume the worst case scenario when I saw that lathomasmd already done so. I was in a similar situation. After surgery, I was told by UCI that my cancer was only in my uterine lining, then told by UCLA that they found no cancer at all (I was shocked but thrilled), then told by MSK that not only did I have cancer but it had spread beyond the lining into my myometrium (increasing the probability of recurrence). This happened over several weeks so I was just mentally exhausted! Didn't know what to think. Then it all started over again! One said no chemo, the other said chemo, and third said it doesn't matter because it's too late. It was torture! After months of overthinking it all, I just decided to assume the worst case scenario. I have serous endometrial intraepithelial carcinoma (very aggressive). Athough it's too late for chemo, I'm extreme in watching for signs of recurrence.

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@inquirer thank you. I'm sorry you had that experience. I'm now also getting a recommendation to do Brachy alone but they "will offer" chemo (fewer rounds than standard) because I " am interested" (love that framing).

This is so frustrating because the logic of interpreting the path reports and then application of ESTRO guidelines isn't making sense to me. And, now, they are saying I have 2 weeks to decide because after that we ate getting too close to the 4-month window.

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Profile picture for Helen, Volunteer Mentor @naturegirl5

@delizzr I thought I would check back in with you. Have you decided on whether you will go ahead with the referral to Mayo Clinic? Or anywhere else?

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@naturegirl5 I got a referral to Mayo from my primary, but ended up scheduled with another specialty(not oncology). Still trying to get Mayo Onco to look at info.

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Profile picture for delizzr @delizzr

@naturegirl5 I got a referral to Mayo from my primary, but ended up scheduled with another specialty(not oncology). Still trying to get Mayo Onco to look at info.

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@delizzr I've been through a referral process in another department (orthopedics) and it took a few months to get an appointment. Your request is far more urgent. Did ask about the process in oncology to get an appointment? I hope you hear back soon.

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It was confusing to me too, but at MSK, where I get my second opinions, the oncologist believed I should have had chemo within a certain period after surgery (I think it was 3 months). Since 4 months has passed, she thought it was too late and proposed the "wait and see" approach instead. I normally ask a lot of questions to better understand why, but I was so mentally exhausted I could hardly think. At that point (last year), it just was what it was. If the cancer shows up again, I'll just have to fight the best I can.

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Profile picture for delizzr @delizzr

@inquirer thank you. I'm sorry you had that experience. I'm now also getting a recommendation to do Brachy alone but they "will offer" chemo (fewer rounds than standard) because I " am interested" (love that framing).

This is so frustrating because the logic of interpreting the path reports and then application of ESTRO guidelines isn't making sense to me. And, now, they are saying I have 2 weeks to decide because after that we ate getting too close to the 4-month window.

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@delizzr Yes! I just posted a second ago that MSK suggested the "wait and see" approach instead of chemo because it had been 4 months since surgery. Please fact everything I say, but I'll share what I learned that may be helpful to you. Each oncologist (in my case) based their decision to recommend chemo on whether cancer cells existed beyond the uterine lining into the myometrium (muscle layer beneth). If cancer cells were in the myometrium then they could have used the blood vessels and/or lymphatic system that exists in there to spead anywhere in the body. Chemo is then highly recommended, especially for the serous type cancer. My understanding is that stage 1a allows up to 50% invasion into the myometrium, so they were recommending chemo for me even though the invasion was small. If you're 1c, that means there's invasion beyond 50%. Given what I just explained, I would think they would have automatically recommended chemo. The only difference I can think of might be in the type of cancer. Mine was Serous Endometrial Intraepithelial Carcinoma.

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