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Really worried

GCS Project Home Forum Share Your Story Really worried

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    • #7820
      Gaynor Forman
      Participant

      I was diagnosed with CS of the endometrium in August 2018.Stage 1b . I had a hysterectomy in October but they failed to remove some of the lymph nodes they wanted because of previous radiation damage from 10 years ago .I am now 7 weeks post op and have no plan from my oncologist to start any treatment any time soon . She seems to be of the opinion that it wont make any difference if I have chemo or not which is contrary to everything I have read .I have tried to get another oncologist but its not that easy in the UK so it looks like I might be stuck with the one Ive got that doesnt think chemo is a good idea . All my instincts are screaming at me to have chemo but I dont know what I can do . Im really worried that there were lymph that couldnt be taken and so havent been tested . Any advice gratefully received .

    • #7821
      Betty Halpern
      Participant

      I do not about oncology in the UK. I was Grade 3 , stage 1A, uterine carcinosarcoma, after surgery with negative lymph nodes was given 6 rounds of Chemo with Carboplatin and Paxil then 5 brachytherapy radiation treatments. This seems to be standard, there are other people on this site from the UK , look to see who they are and who they went to. Sorry I can not help further

    • #7946
      denne
      Participant

      Gaynor,
      I had a stage 1b and it sadly metastasized to my lungs after chemo with carbo and taxol
      . In my pathology report, it stated that I had extensive lympho vascular invasion of the uterine wall. I felt that this was an important factor. Look closely at your path report and get chemo if you can. I am doing well at this time on the 2nd line chemo…ifosamide.. it shrunk the tumors and is now stable disease. 1b is definitely questionable as to whether to go forward to chemo. Just get it, if you can and I would ask for a ct scan after 3 months which I wish I would have done.
      i feel very well between chemo treatment and have enjoyed life in a big way… I’m glad that the GCS Project is launching a trial. I’m hopeful!
      Look carefully at your path report and state in touch.
      sincerely,
      Linda denne

    • #7975
      Anonymous
      Inactive

      I was diagnosed with Stage 3 MMMT Endometrial cancer in April. No cancer in my lymph nodes. I did 6 rounds of chemo (Carboplatin and Taxol) 25 radiation sessions and 3 Brachytherapy sessions. On October 11th after my CTScan, I was told there were no lesions and no evidence of lesions. I am from the US.

    • #8003
      ann
      Participant

      Gaynor,
      I encourage you to try to find someone who can give you the chemo treatments. Everything I read, too, encouraged chemo even if they thought they had gotten all the cancer.

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