Cancer Research UK main site

Ovarian carcino-sarcoma

Mayski
Offline

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

  • Offline

    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

  • Offline in reply to SallyD

    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 

  • Offline in reply to SallyD

    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

  • Offline

    I was diagnosed with this cancer eight years and three months ago. I had surgery and six rounds of standard chemotherapy. I have had no treatment since. I am fit and well for my age and have not looked back. ( I am 77) I was given two years maximum and in my case three months. Treatment has moved on since then so do not look on the black side. I understand your feelings, people in our position do but I am an example that there are exceptions.Please use every avenue to keep you and your mum in a positive frame of mind. Complementary therapies helped me no end. Colour me beautiful, the hat shop, reiki, reflexology, Massage and counceling from a local cancer charity.

    Keep well and smile as much as possible.

    Hope all will be well.

  • Offline in reply to joken

     

    I was recently diagnosed with stage 1a uterine carcino sarcoma and am due to speak with consultant next Wednesday to discuss chemotherapy treatment .

    it is hard to find anyone who has had a similar diagnosis as it is so rare.Well done on your continued recovery that is great to hear.I shall look into some of your suggested therapies they may help with my anxiety.

Speak to a nurse

Quick links

Follow us

Registered with Fundraising Regulator (logo)
Cancer Research UK is a registered charity in England and Wales (1089464), Scotland (SC041666), the Isle of Man (1103) and Jersey (247). A company limited by guarantee. Registered company in England and Wales (4325234) and the Isle of Man (5713F). Registered address: 2 Redman Place, London, E20 1JQ.