Help! does anyone else have carcinosarcoma (MMT) It would be great to talk to you

I have just had a hysterectomy as a the result of a fluke visit to my GP which resulted in a scan and the consultant recommending a op to remove what they thought was a fibroid. Unfortunately it was stage 2 Cacincsarcoma which I haven told id very aggressive and rare. I have looked on line and the prognosis does not appear good. obviously I know that each reposes to treat meant is individual and I am hopeful as they have got it at stage 2 and most of the reporting is on situations that are at stage 3/4.

I am currently on 6 cycles of cargo/taxol and have just completed my 2nd cycle. I would live to hear from anyone who either has this, and /orwhat treatment they are having.

I am keeping positive but feeling unsettled today.

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  • Hi there newlife ...

    I did reply to your post a while back re that I have carcinoscarcoma stage 1c as my Ovarian mass had ruptured in to my plevic area ...not sure if you got the mail or not as never heard back from you ..Do hope you are ok after your op ???

    So very sorry to hear you have this horrible beast but at stage 2 its very positive and if you can at all try and stay positive ...I am sure it helps in the long run ...

    I will admit was worried at first but when I started the chemo I stopped worrying .

    I had just finished my last one yesterday ! really pleased about that ..I have a scan in mid july and will see the consultant in Sept but hoping to get the result before then ...

    How are you coping with the chemo ??? what side effects are you having ??? ...I drink loads of water each day and that is such a big help . Any sicknesss ??

    The carbo /taxol seems to be standard treatment for Ovarian cancer and what we have too , whether in this country or the states .

    all of the ladies I have met with Ovarian cancer have been at further stages like 3 or 4 ... but have not met any one yet with what we have .

    So at stage 1 or 2 is very positive ...

    On the week after my chemo I eat what I fancy and after that go back to my healthy eating that I have always done .

    You will have good days and bad days of feeling positive and then not so its normal to feel like that .

    I try and have a walk each day if feeling ok ..they say its good for your well being. How is your hair doing ??? have you a wig or not bothering ..I did go for a fitting but have got it but have not worn it yet ...stuck with hats and scarfs .... do you have any support at your hospital ie we have a big C centre where people can go and meet who have cancer ..that has been a big help ..I did send you my E mail please feel free to mail me if you want .

    Do you have a support nurse at your hospital that you can ring and chat to ?? .

    Do hope you have some sunshine where you are today .... take very good car now ..

    Best wishes Janet xx

  • Hi Janet,

    i am sorry if i missed the message u sent I have just checked back but can't see it. Using the internet in this way is new to me so i must be looking in the wrong place so apologies again.

    It is good to hear from someone else who has the same thing.Can u send me your email so i can write to you mine is frisbygallagher@sky.com. I have just shaved my head as hair coming out and i am fiddling with scarves and hats but have just gone Au naturale for now. I guess I will use them once my eyebrows go as i understand this can look a bit odd.

    I have a wig fitting on Thurs so will see how that goes

    I have been building my walking to 5 miles x3 times a week since the hysterectomy and want to get to using the gym if possible.

    Please resend your email I would love to chat with you about this

    Donna

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