Please help me with my therapy decision, thank you all very much in advance

Susiemaccancer

Hello all, I have been reading some of your excellent comments but I have specific questions and hopefully, one of you wonderful ladies out there can help me make a decision, please :-)

5/13/25 Pap smear discovered atypical cells. Further pathology = HIgh-grade serous endometrial adenocarcinoma, P53-Mutated.

6/27/25 Robotic total hysterectomy and pathology = serous carcinoma, negative ovaries/tubes, negative lymphovascular invasion, negative fibroadipose tissue, negative right/left lymph nodes, not identified myometrial invasion, not identified serosal involvement, not identified lymph/vascular invasion and negative surgical margin for tumor. FIGO Stage IA pT=pT1a pN=pN0

BUT

P53 Aberrant :-( Positive P16 Proficient MMR MS-Stable Not Reactive HER2

Some Immune Markers= CD8, LAG3, PD-L2 and VISTA

My gyno/oncologist has told me that she is recommends VBT 5times and 3-month observations. But today she has also said that the decision to do chemo is something that she can neither recommend or not recommend?? I am not an oncologist, I am a retired 71 yr old secretary. Is there someone out there that has or has had a similar pathology, tell me which course of therapy they followed and then if recurrence was delayed. What was your experience, please. I realize this p-53 mutation is not good ;-(.

I hope that I have given enough info to help you provide guidance. Thank you all in advance, Sue

Susiemaccancer

ps Washings were also negative

MJS19

I'm sorry this happened to you. I was also stage 1 with serous cancer, but mine was papillary (UPSC). I also have the p53 mutation. Everything tested was negative. I am HER2+, which wasn't known at the time, as I think it wasn't automatic 6 years ago to do the complete genetic testing of the tumor with grade 1 cancers, which I believe, but am not sure, that major medical centers like mine do now automatically. I was tested when I recurred about 18-20 months later.

Did your onc/gyn explain and discuss with you why she nis unwilling/unable to make a recommendation about chemo? Mine explained everything to me, and I made a decision to do the chemo, which was his recommendation. That first chemo was two drugs — taxol and carboplatin, which were the standard then. I believe that many women also have a third drug now based on the genetics of their tumor testing or don't have taxol or carboplatin at all. The reason I went with his recommendation was: 1). He was my robotic surgeon and would also be my treatment doctor. I already liked and trusted him immensely. He was Johns Hopkins trained, did a brilliant job on the surgery, which ended up being more complicated then we'd thought it would be, and — very importantly to me — he is so warm and kind. 2) Although I was stage 1, serous cancer is high grade and UPSC recurs more often than many other endometrial cancers, so chemo was the cautious way to go. I don't have diabetes or high blood pressure or high cholesterol or other conditions that might have made chemo harder for me. ( I was 65 at the time.) I also did the VBT 5 times, which was the radiologist's recommendation, although at the time they both told me that there was not strong evidence that it would make a difference for me (or something like that). They both recommended it, so I did it. I was not difficult or painful, and I had no side effects from the VBT at all.

The only guideline I can give you is that if your gyn/onc did not explain her reasoning — in detail — for not advising you one way or another, that is not a good sign, and I think you should ask for the pros and cons of chemo/not chemo that underlie her lack of a recommendation. If you can't that, my take on it is that you should get a second opinion. If I had to guess, my guess is that the reason behind the lack of a recommendation one way or another is that your doctor thinks the odds are that your cancer will not recur based on your overall picture, but there is no guarantee, so the safest thing is to do the chemo. But chemo is no picnic, so it's not a light thing to recommend chemo to someone who doesn't need it — and there is no way at this point in your cancer for them to know for sure whether you need it or not. Your doctor and you can only look at the odds of recurrence vs. the ordeal and side effects of the chemo. But I think it's essential that you look at those things together so that you can really understand the facts and base your decision on what information is available now and based on what is most important to you.

Good luck!

Susiemaccancer

https://csn.cancer.org/discussion/comment/1724337#Comment_1724337

Oh MJS19, I too am sorry that you have had this challenge. I cannot thank you enough for your comments as our conditions are very similar and they shed increasing clarity on the way I must go. As you probably did, I do dread making the chemo decision. I made a second opinion appointment for Sept 8 with Memorial Sloan Kettering. I feel that I needed to hear the rationale from a larger cancer center, even if the end result is the same.

And yes, I believe that you feel, with this darn serous P-53 mutation, that you need to throw everything that is available at the cancer.

If I understood your comment, you say you recurred in 1.5 years, I am sorry for this. You go through it all and as you said there aren't any guarantees. I am so sorry that we have to face this challenge, it is terrifying and thankfully there is this community that can help us not feel alone and as you have done for me, provide some real life feedback and recommendations. I truly thank you so very much for reaching out to me. I will know more after my Sept 8th meeting, but I believe that I will be advised to start chemo. And I guess, the sooner I start, the sooner it will be over 🙏 I hope to be able to reach out to you real soon. Thank you so much again Best of Luck to you!💗

Forherself

Hi Susie MccANcer. Sorry you are dealing with this. It is hard not having definite answers. You don't say where your cancer was. Was it confined to a polyp? It sounds like there was cancer in your biopsy but none was found during surgery. Is that correct? There are guidelines for each stage and grade of cancer. It's possible that the guidelines do not specify chemo. People have a tendency to want to hit it with everything so give the patient the decision. I asked my surgeon what she would do in my position. She said she didn't think she would have treatment. The guidelines say, for me, that chemo or radiation did not improve survival. I had serous endometrial intraepithelial carcinoma. That is it was confined to a polyp only. And for this serous carcinoma with the P53 mutation (I had it) the recommended treatment was observation, or radiation. I chose observation as my surgeon said that is what she would do in my position. That was 7 years ago and I have not had a recurrence. I would ask your surgeon the same question. No one can give you a definitive answer on what you should do. There just isn't one. Good luck!

Susiemaccancer

Good Morning Forherself,

Thank you very much for your reply and sharing your experience with me. At my 2nd opinion at Sloan Kettering yesterday I learned that my cancer was confined to one polyp(didn't know that previously, but not sure if any microscopic cancers cells were remaining elsewhere after the total hysterectomy). This microscopic cell spread is the only reason that I am contemplating chemo. And yes, my cancer was found in the biopsy, and was undetected in all sampling of cavity and sentinel lymph nodes and pelvic washing. The Sloan doc showed me the Sloan "worksheet" that showed Stages 1a+1b =treatment with Chemo + IVRT* . The * stands for :"the role of chemo in Stage 1a with no myometrial invasion is unclear (shared decision making)". I hope to attach the screen shot that I took of her laptop screen.

I am elated for your good news of non-recurrence, so very happy with this news! I am extremely happy that you reached out to me to share your story thus enabling me to find my way along this terrifying path. The Sloan doc said that women in my situation, polyp only, 1a serous endocarcinoma have ~15% chance recurrence and that chemo may reduce to ~10% (because of microscopic cancer cells lodging elsewhere (lungs, lymph, other organs). Some women think this percentage is enough to forego chemo and some choose, as you say, "to hit it with everything" even though the result is unclear and the chemo effects are real. I do not know what chemo will do to me. Other than this cancer, I'm relatively healthy, no drugs, I exercise and my weight is normal. Thank you again Forherself, I can't thank you enough for your help. Continued Good Health and Great Life!! Regards, Susiemac

Forherself

You are welcome. We all remember the uncertainty you are experiencing. It is all very scary and we are here to help you make it through. There are lots of women who have had chemo and radiation here.