Ovarian carcino-sarcoma

Just found out it's what my mum has. According to my google research it's very rare (1-2% of all ovarian tumours) and very aggressive and prognosis is very poor. My mum had her surgery about a month ago and now undergoing another round of chemo (she had four before the surgery). We think the cancer is all out of her following the surgery although having scared myself brainless with all my googling I realise that there are so many variations and meanings to that phrase. The only thing that sticks with me is how poor the prognosis is conveyed online. I haven't been able to speak to her doctors. I need someone to tell me that it isn't that bad for everyone. Has anyone been unfortunate enough to be affected by ovarian carcinosarcoma (also known as ovarian MMMT)?

I was feeling so happy at her progress after her surgery and now having read her pathology report I just feel terrified and sick to my stomach.

Mayski

xxx

Parents
  • Hello mayski my name is Sally I had an ovarian carcinosarcoma it's been a year since surgery I had a total hysterectomy followed by six cycles of chemotherapy then five weeks of radiotherapy they hit my cancer hard and I've been told by my oncologist that I have just a five percent chance of it coming back which as you can imagine is fantastic news for me don't believe what you read online I would seriously speak to you're mums doctors my cancer was caught very early so the prognosis is excellent but if it is caught late I'm afraid the prognosis is poor and my doctor said if my cancer was to come back it would of within the first 3 months thank god im a year free so far and my doctor said the longer I stay in remission I stand a chance of it never coming back so please talk with the professionals and I am here anytime if I can help all the best to you and you're mum godbless kind regards Sally xx

Reply
  • Hello mayski my name is Sally I had an ovarian carcinosarcoma it's been a year since surgery I had a total hysterectomy followed by six cycles of chemotherapy then five weeks of radiotherapy they hit my cancer hard and I've been told by my oncologist that I have just a five percent chance of it coming back which as you can imagine is fantastic news for me don't believe what you read online I would seriously speak to you're mums doctors my cancer was caught very early so the prognosis is excellent but if it is caught late I'm afraid the prognosis is poor and my doctor said if my cancer was to come back it would of within the first 3 months thank god im a year free so far and my doctor said the longer I stay in remission I stand a chance of it never coming back so please talk with the professionals and I am here anytime if I can help all the best to you and you're mum godbless kind regards Sally xx

Children
  • Hi Sally, thank u for posting your story I'm so happy you're on the road to recovery, it's lovely to hear. My mum was today diagnosed with carcinosarcoma ovarian cancer. She had her ovaries removed 3 weeks ago and has an appointment next week to discuss her treatment plan. They didn't remove her womb as the surgeon said it was healthy and could have resulted in her Losing part of her bowel. After looking online I was very scared as prognoses doesn't look good but after reading your post you have given me hope. Can I ask how old you are? My mum is 65 and going very well after her op but I worry how the chemo will affect her. On top of this she has had breast tissue removed as she had pre cancerous cells but not connected to the ovarian cancer. Take care. Hayley X 

  • Hi how did the chemo effect you was it terribly debilitating?

    I have to decide wether to have it or not. Have been told it's a1 in 10 success rate for me.

    I had a total hysterectomy on 24rd March.

    8 weeks on it has spread to my abdomen on the outside walls of my bowels

    Not looking good.

    Marcoop