Endometrial Cancer - Positive Pelvic Washings (Peritoneal Washings)

For what it's worth, the very detailed 2023 FIGO endometrial cancer grading makes no mention of positive washing.

I would be very interested in knowing this also, I had hysterctomy 8/29/22 no ovary, no fallopian tube, and lymph node involvement, but wash had A. carcinoma eells, so I was given a 3 chemo, 5 weeks radiation, 2 brachy, then 3 chemo. Last chemo was 4/20 and blood work is still affected by chemo, so hematologist says. Had a scan month or 2 ago showed nothing. However, he decided to run another CA125 test and was 42, I have diverticulosis and have read it affects the test. However, now he wants another scan and another CA125, and more blood work this coming week. I am getting tired of all the negativity. The first 6 weeks after the hysterectomy I felt fantastic till all the chemo and radiation started, now have neuropathy in feet and right hand. Makes me wonder if any of the chemo/radiation is just too much and whether it did anything or caused more damage than what it helped. I really would like more info on whether all this testing is going to do anything but stress me out. He tells me to go to a acupuncturist for the neuropathy, I just don't know what that will do to me.

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I suspect that you may have been given brachytherapy at least in part because of the positive pelvic washings. Otherwise they may not have done any treatment beyond the hysterectomy. Undertreatment is bad, but as terradean noted, overtreatment is bad too. You may have lasting side effects and have no way of knowing whether it was necessary or not.

If the doctors who come up with the treatment guidelines think that positive pelvic washings should not be included in the treatment algorithm, it's unlikely that the people on this board will have much useful to add. I took a quick look at this literature, and it looked like a mess to me.

I agree that being in this situation is upsetting. I am also concerned that my surveillance program (a pelvic exam every 3 months) is unlikely to detect recurrences before they become large and problematic. But I have concluded that I can't do anything about it and that I just have to accept it. I'm thinking positive thoughts and putting it out of my mind.

Do you know the results of the gene tests from your tumor? They should have tested it for a gene called p53 and for 4 genes involved in something called mismatch repair (abbreviated MMR). If those are all negative, a possibility that might make you feel better, IF you got the right result, would be a test for mutations in a gene called POLE. The recurrence rate for POLE-mutated endometrial cancers, which make up ~10% of all endometrial cancers, is extremely low. The national treatment guidelines actually say that endometrial tumors should be tested for POLE, but I learned that in practice, they currently are not in the US. I suspect that this is because insurance won't cover it. I was unwilling to start chemo without having my tumor tested for POLE, so I had my specimen sent to Stanford for the POLE test. It cost me $450 out of pocket in September 2022. It's a bit like buying a lottery ticket: you have a 10%+ chance that the result will be positive, and you will be really happy. If it's negative, you're just out $450 (or whatever the price is now.) Mine was negative, but I'm still glad I did it.

ok, I was FIGO GRADE 1 ptCAT pt3a, MMR Protein MLH1 - loss of nuclear MSH1 - Loss of nuclear MSHC - intact nuclear MSHC Intact nuclear PMS2 -Loss of Expression internal intact - Mismatch MMR Proteins: Loss -(think I'll ask him what all that means when see Hematology on the 31st) -( No Lynch syndrome) which is good
Endometrial adenocarcinoma G1-2 - The Dr. who did the Hysterotomy stated when I did the treatment plan I would be completely done. My gynecologist told me before any of it I would be seen every 6 months for 3 years after hysterectomy. Then all these scans and blood test start very disheartening.

@shay16 I will share what my GYNOncologist told me when I learned that my pelvic washings were positive (I did have a hysteroscopy during the D & C prior to the hysterectomy). In my case I was staged at Stage 1am FIGO Grade 1 after my radical hysterectomy for endometrioid carcinoma by pathology for the actual specimen of uterus, cervix, ovaries, fallopian tubes, and sentinel nodes (these were negative). The pathology report on the pelvic washings (a separate report by a different pathologist) noted that with these cancer cells were present in the washings, the cancer was metastatic and that I was now Stage III. I was in a panic when I read that as I received that pathology report before my appointment with my GYNOncologist. When I talked with her she explained that prior to 2012, FIGO Guidelines were that positive pelvic washings were upstaged and treated with adjuvant therapy. However, since that time the guidelines have been revised and this is no longer the case. As @val64 noted when you read the research literature there is no clear agreement on whether positive washings should result in upstaging. Now, it’s important to note here that not all hospitals, physicians, and practices agree with this or consider this the standard. My doctor explained that my cancer did not require adjuvant treatment, it was Stage 1a and the biology of the kind of cancer I had does not result in these cancer cells basically floating around, attaching to, and growing into a tumor elsewhere. Note though that this does depend on the type of cancer. So, I’m going to assume that if someone is diagnosed with a different type of uterine cancer such as clear cell carcinoma that the decision on whether or not adjuvant treatment is recommended would be different. The key if I am understanding all of this correctly, is that not all uterine cancers are the same and so the biology among these cancers will be different. This is one of those situations where a discussion with the GYNOncologist is necessary and if you aren’t satisfied with that, ask for another opinion based on the evidence.

All of this, by the way, continues to make me anxious. Like @val64 when the anxiety about this pops up I acknowledge it and try to let the anxiety float away. I can’t do anything about this other than return for my cancer surveillance appointments on a regular basis.

I do believe only time will tell. My gynecologist said he didn't expect anything coming up, with all they put me through. However, then hematologist comes up with all the extra testing. And, I just wish could have a month off from all the testing rather than more testing being added. I do thank you all for your thoughts, it has made this journey much easier to go through.

Thank you so much for your reply. As you said, the literature on this is a mess and frustrating that no consensus in the medical community. Helps me to know others have the same anxiety I have. I have not heard of POLE testing so will look into that.How did you have a specimen sent?

I first contacted Stanford to ask about the price and if they would run my sample. (If you google "Stanford POLE testing", you can find an email address, something including "pathologymarketing".). Once I had determined that the price was acceptable, I told the nurse practitioner exactly what I wanted and she ordered it.