Ovarian CarcinoSarcoma

Hi all.

I'm new to this site. In June this summer my mum was diagnosed with stage IIIC ovarian cancer. She's now had lots of chemo and a complete hysterectomy surgery. We've just got her pathology report and discovered she has carcinosarcoma (or ovarian MMT).

I immediately turned to google research. Big mistake. 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. I need someone to tell me they've had it and are as good as gold now. I'm just terrified.

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. Every single cancer is a monstrous beast but this one just seems particularly cruel to me.

Would appreciate anyone's comments.

Mayski

15 Replies

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  • Hi, welcome to this site, you will get plenty of replies from ladies experiencing the same or similar. Stage 3c appears to be the most common stage at diagnosis. My Sandra was stage 3c papillary serous carcinoma which I understand is common. Anyway the treatment is pretty the same for everyone. Taxol and Carboplatin for 6 cycles with surgery in between. It is very effective and hopefully your mother will have a good response. Unfortunately recurrence is common but there are many regimen treatments that will provide further responses so i,m sure your mum will benefit. Its a case of taking it one step at a time and not to get concerned by doctor google. Trust the oncologists to do their best for your mum. Sandra has now endured many recurrences and aftr 4 years is still here. Love Paul xx

  • Dear Mayski,

    I know just how you feel, having looked up carcinosarcoma online. I hope you will feel a little happier when I tell you that I had the same diagnosis at the same stage. My surgery was at the end of Jan 2009, and I had 6 sessions of chemo (carboplatin- I refused taxol) afterwards. By March my ca125 was below 10, and I've been in remission since. I intend not to get it again! My surgery also removed all visible disease, so I am very optimistic.

    I hope your mum has the same experience. Focus on general health and immune support.

    Wishing you both the very best,

    Isadora.

  • Dear Mayski ,

    The web is a wonderful tool but it can also worry you wittless in as much as you tend only to take in the bad info .

    I was diagnose last Jan 12 with a Carcinosarcoma at stage 1c having had a full hysterectomy in Dec 11 .

    I had chemo last year and thankfully ..touch wood ... I am keeping well .

    Isodora is so right in saying to focus on general health and immune support and I do so agree with her on that one .

    I walked a fair bit before OC and still do but now each week I go to exercise classes which is good for me and I enjoy it and don't see it as a chore .

    It sounds as though your mum has a wonderful daughter in you and very carrying too .

    Try and stay positive and take each day as it comes x

    Love Jan xx

  • Stop with the googling, it really doesn't get you anywhere but scared. You need to stays strong for your mum and that's hard enough. Ovarian cancer is in any case classed as a rare cancer, and there are many subtypes making them all relatively rare, then you have specific ones which are rarer still... It gets very detailed and the main thing to do is simply to assume that no one person is a statistic anyway! Stats are, by definition, only relevant for groups, and always out of date.

    As has been mentioned above, 3c is actually the most common stage to be diagnosed - that, in itself, is shocking - but chemo, interval surgery then more chemo is becoming the gold standard treatment path for many types. So they have her on a positive route. Try to regIn the positivity, and take it one day at a time, ok?

    Love

    Sue xxx

    PS - yes, I was 3c, had the same treatment path, and so far clear a year after finishing chemo x

  • Well, the problem might be that statistics apply to groups, and not individuals. There are no statistics for individuals, to quote the exceptionally wise MD, Bernie Siegal. Try googling him and his excellent anti cancer/guided meditation CDs. When I was diagnosed in 2009, I had a 25% chance of surviving for 5 years. More than 4 years later, I am still cancer free, I haven't recurred. I don't know what's going to happen in the future, but I know that my chances of dying by September 2014 from cancer are very slim.

    So, please try not to worry. It have been proved that one of the factors that have a positive effect on ovarian cancer survival is good family support. You sound excellent at that. So, keep on doing what you're doing, and please pass on my very best wishes to your mum.

    Vicky xxx

  • Hi Mayski

    I've just found out my mum has OC and, like you, spent a scary few hours googling horrible statistics. We still don't know what stage or type of cancer mum has but it is likely its at least stage IIIc and it seems to be aggressive judging by her onset of symptoms. However, much of the information I've found says that survival from OC depends on a number of factors, not just the grade and type of tumour, for example the treatment offered, responsiveness to chemo, the skill of the oncologist and surgeon, health of the patient, family support and mental attitude.....so a lot there to influence outcome. It sounds like your mum has had amazing treatment so far and that in itself will put her ahead of the game. Its also fantastic that surgery seems to have got it all.

    Its an awful, anxious time, and I have so much empathy for you as I know what a wreck I can be myself every time I sit and try and think about the 'what ifs'. The key is one day at a time. Statistics can be very misleading and are out of date - even five year stats published this year will be at least five years out of date already.

    Talking to her doctors will help you I'm sure. Fingers crossed they give you some positive information to make you feel better.

    Love winni x

  • Hi everyone

    Thank you so much for your replies. You've no idea how much better they've made me feel. I've gone from tossing and turning all night to finally getting some sleep after I read your responses. Let me also say I'm truly sorry for all your suffering caused by this terrible disease but how wonderful to hear how well you're all doing. I almost typed 'it's good to talk to someone with the same thing as my mum' which it clearly isn't but you know what I mean.

    I will definitely try to focus on getting her better mentally and physically. She has good days and bad days and we're just trying to reduce the bad days as much as possible. Chemo makes it difficult for her to eat and she's lost a lot of weight but I know she wants to be strong and healthy and I'll do all I can to make sure she gets there.

    All my love and best wishes to you all. Thank you so, so, very much. I honestly can't explain how much better I feel having read your responses.

    Mayski xx

  • Dear Mayski,

    I didn't reply earlier because I haven't been diagnosed with a sarcoma (but carcinoma) so I haven't got any experience in a sarcoma I know there are many people on here with different experiences, I am glad you are feeling better though.

    I just wanted to send you and your mum my best wishes love x G x

  • Thank you so much Gwyn I really, really appreciate it. I hope your experience with carcinoma isn't too awful and is one that improves and all my best wishes to you too xx

  • Hi Mayski

    I underline everything said so far. Dr Google can be the ultimate pessimist. When my wife (Angie) was diagnosed I too went through the very same experience and found it terrifying until I joined this forum. Here I found that the stats didn't always portray an accurate picture of individual experience. I learned to read and absorb what I found without assuming anything. Yes, this is an awful disease with a poor prognosis, but that doesn't mean everyone has the same experience and the many positive personal experiences here are testament to that fact. Look for the positives in your mum's own experience. She seems to have had optimal debulking surgery and that is an excellent result. If her chemo has been effective; even better. Now take one day at a time maybe focusing on her health instead of her diagnosis. Angie amazes me with her outlook, "I am living with cancer not dying of it," and "I have cancer, but it does not have me." A great mantra to follow I find, which allows us smiles and happiness instead of gloom and tears. That works for us and I am sure that you will soon find a coping mechanism that works equally well for you and yours.

    Best wishes to you, your mum and your whole family.

    Andy x

  • Hi Andy. Thanks so much for your lovely message. You're absolutely right and I'm starting to understand that now - just because the internet is full of horrors doesn't mean it's the same with everyone and I can see that from all the wonderful responses I've had here. I'm slowly going back to just being grateful at how well she's done so far and as you say, focusing on her health instead of her diagnosis. Your wife Angie sounds incredibly strong and I admire her attitude and outlook - if only she could infect my mum with her positive-ness! But I will work on it. All my very best wishes to you and Angie as well as the rest of your family.xx

  • I have an ovarian carcinosarcoma that was diagnosed 5 yrs ago. I have had 2 sessions of chemo after the surgery. I have been in remission for almost 4 yrs. I feel great, and I know another survivor of the same cancer near my home in the US.

    I got nothing but negative news about my type of cancer on the internet. There are many survivors of this cancer, and we have to get the news out. I am feeling great at 75 yrs of age, and want other women that have been diagnosed to know that survival is a good possibility. Do not allow statistics to take away hope.

  • Hi Willies. How wonderful to hear. Thank you so much for responding to this and I'm both delighted for you and for my own mum to hear your news. May the dreadful thing never, ever come back. Mum is now on her 10th chemo session in total, although she's now only on Avastin (which I'm still not too sure what it actually does) but apart from a couple of scares she's doing brilliantly so far. I've completely stopped looking for statistics on the internet and you're absolute right, I refuse to let them take away hope. All the best of luck to you and your family and thank you again for helping to put my mind at rest. Mayski x

  • Dear Mayski,

    Avastin isn't classed as chemotherapy though... it is a drug often given intravenously (but sometimes orally) to prevent the blood flow going to the tumour thus starving it of any blood supply (so stopping the growth) and is often given for quite a while after finishing chemo, I think for as long as it is tolerated.

    Glad your mum is doing well.

    best wishes love x G x

  • Hi Gwyn. Thank you so much for clearing that up for me - as you can tell I'm pretty confused with it all. She's just done her first Avastin session (is that how you refer to it?) and apart from some fatigue and joint pain she's faring so much better than she was on chemo. I can't help but wonder though, because according to her ca125 (now down to 13) and her scans there are no remaining visible cancer cells/tumours in her body. You mentioned that Avastin stops tumour growth - so if she doesn't have a tumour why is she on Avastin? Can you be put on Avastin even if there aren't any remaining visible tumours? I know I'm being silly and should ask her doctors (I feel silly!) but the fact that I live in a different country and the fact she sometimes evades my questions makes me wonder if there's something she's hiding. Thank you so much and I hope you're doing well. Mayski xx

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