2024 --Is anyone currently treating for UPSC?

SSuzanne
SSuzanne Member Posts: 3 Member
edited June 2024 in Uterine/Endometrial Cancer #1

I'm starting chemotherapy January 8th, and not sure how many cycles -- perhaps only three. Since I just turned 82 and my hysterectomy showed no disease, it is questionable how much therapy I should get balanced against the toxicity of the chemotherapy. I had an exploratory hysteroscopy in October (as a result of spotting and an EIN biopsy) and a large polyp and a small mass were removed, along with a complete D&C at that time in October. The papillary serous carcinoma was discovered ONLY in the small mass. However, because of the agressiveness of USC, I underwent a "very complete" robotic hysterectomy removing about all that can be gynecologically removed. My CA-125 was 22. The surgeon thinks a good remedy is to complete 3 cycles of chemotherapy, but never mentioned radiation. I'm feeling fine, the surgery was not difficult -- went to a Christmas tea . in 8 days after. I'm fearing the damages from chemo Mostly, however, I'm so very thankful the USC did not get me sooner with a lifetime of work and raising five daughters.

Comments

  • Forherself
    Forherself Member Posts: 1,018 Member
    #2

    Good evening SSuzanne, welcome. I read you post and thought my story would help you but I cannot read my own profile. Maybe you can. You said you had no disease at hysterectomy. Did your pathology say no malignancy in the hysterectomy specimen? If so, that is what I had. If that is the case there is no set treatment for that stage. The decision is made by you and your doctor. You can read about chemotherapy on this website. Search for it on our page. There is lots of information about icing, etc. I hope there are others who will respond who are having treatment now. I did not have a CA-125. It is only relative for some women, and I don't think they know why. My doctor did not want me to have one. It can be elevated by inflammation in the abdomen for other reasons.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,517 Member
    #3

    Hello SSuzanne, so happy to hear it was found so early. That isn't always the case, but like you, I was diagnosed (dx) with UPSC 1A at 49 yo. Are you working with a gynecologic oncologist? I would suggest asking them what the "standard of care" is for this type and stage.

    Treatment is always the patient's choice, and there is a great thread pinned on "Ladies going through chemo..." and I think the link below should take you there.

    https://csn.cancer.org/node/296461

    It is a little older but still lots of good things there. I had no idea about anything going in so it didn't help me but am glad to see it was created at some point.

    Please let us know how you are doing and don't hesitate to ask questions.

  • maria90
    maria90 Member Posts: 7 Member
    #4
    https://csn.cancer.org/discussion/327529/2024-is-anyone-currently-treating-for-upsc

    Can you tell me more about this exam, I am curious to know.😊

  • maria90
    maria90 Member Posts: 7 Member
    #5

    can you tell me about this treatment

  • Forherself
    Forherself Member Posts: 1,018 Member
    #6
    https://csn.cancer.org/discussion/comment/1716052#Comment_1716052

    Welcome maria90. Are you asking about chemo for UPSC?

  • SSuzanne
    SSuzanne Member Posts: 3 Member
    #7

    Well, my story changed when the steroids given the night before my first chemo raised my blood pressure too high. I became more worried about getting a stroke with four days of the steroids. When they were hooking me up to the chemo, I just decided not to do chemo. Since the surgeries supposedly removed the cancer in one small mass during hysteroscopy — and none was found in the radical hysterectomy specimen, we decided to "observe". My "local oncologist" suggested a test named Signatera (which uses DNA to find very early signs of the identical tumor) in the blood test. It is matched to my DNA specimen and could be treated sooner than waiting to show up otherwise. The Signatera test is made by a company at www.natera.com. In addition to the Signatera test, I've had one CT scan. The Signatera showed 0 which is what I hope continues. However, I have read the serous can return even when it is contained in one small mass, and even in spite of chemotherapy. So since I am already 82, I choose to just observe for now

    I also do the CA125 test with the "surgical oncologist". My numbers have been 5 - 12 and never close to the 39 limit. As I observe, I have been able to forget the issue and enjoy what life I have left. I'm crossing my fingers for all of us, and wish the very best for you. I will let you know if anything changes.

  • ConnieSW
    ConnieSW Member Posts: 1,688 Member
    #8



    I think you have made an educated and thoughtful decision. I wish you all the very best. ,

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