New Diagnosis and Consumed by Fear

jazpgh8 Member Posts: 2 Member

Hi Everyone. First, I want to recognize all of you as warriors. As I start my own journey, I hope to be half as courageous as all of you.

But for now, I am just consumed with fear and need help, guidance and words of wisdom.

Diagnosis 6/13/24: Stage IVB, Figo Grade 3, dMMR, Endometriod Adenocarcinoma.

Had hysterectomy/debulking 6/14. Evidence of tumors in lymph nodes, omentum(removed), appendix (removed); on diaphram, bladder, within perotineum of abdomen (and I’m sure other places, but no Mets to lungs/liver). Surgeon optimistic about outcome of surgery, proclaimed all visible cancer removed. Discussed next steps during post op visit 6/26, which included chemo and immunotherapy (due to dMMR status) starting 7/18. THEN…had baseline CT scan 7/5, and radiologist noted a 4x3 cm nodule on bladder and 7mm nodule on messentary….three weeks after successful surgery.

Has anyone seen or heard of anything like this? I’m so scared that all the optimism my gyn onc expressed is wiped out by this ultra fast occurrence. I was clinging to chemo/immunotherapy as being a silver bullet - but assumed we were outrunning new growths…now we aren’t.

Words of wisdom appreciated!


  • Forherself
    Forherself Member Posts: 999 Member

    Welcome. I am so sorry you have to deal with this. It IS scary, but there is hope. You are a statistic of one so stats may not be you. I don't read any studies that are older than about 5 years. Treatment has improved so much with immunotherapy. It sounds like your doctors are organized and planning a good treatment strategy. We have other members who have been stage IVB and are still with us. They will hopefully respond to you. The board has been kind of quiet lately.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,444 Member

    jazpgh8, everything you are feeling is normal. While that may not be comforting, try and take a breath. The dMMR is very responsive to immuneotherapy so that is a positive. You are a statistic of one, so continue to take care of yourself. Please let us know how you do with the treatment. Hugs dear one.

  • Spikecancer
    Spikecancer Member Posts: 1 Member

    I feel the same, so scary , unknown, alone. Every path is different, yet similar, we need to share and support. I started immunotherapy, taxol and carbo on 6.12.24. Also dMMR .Had hysterectomy in 2016, no chemo. Took 8 years, started having back pain and then blood clots in urine long story seems endometrial cancer back. My chemo has been fine, very mild side effects. Worst is testing,bad news,testing. Actually relieved once a plan started. After 9 weeks of tx will have a CT to determine size compared to start.

    Yes feeling alone, as no one has my exact situation, yet this board and friends help.