I’m newly diagnosed with OC and wrote a post a few days ago about the need to have chemo for a stage 1A. However, after meeting my oncologist, I now better understand why. The final biopsy of the cyst they removed from my left ovary revealed it was a carcinosarcoma. My stage is thus 1A, grade C. After an almost complete hysterectomy (I only keep my right ovary, the rest is gobe). I will thus go through 6 rounds of carbo/taxol in the next few months.
Since I know it is carcinosarcoma, I did a lot of research on Google and what I found is, I admit, quite scary, given its a very agressive type of tumor and also, because it is rare, they don’t have much data on it so far. Plus, the statistics on prognosis are so scarced that I don’t think I can rely on them to have an idea about what to except.
I am thus writing a post with the hope of getting advice and testimony of those of you who had to deal with this type of cancer at an early or more advanced stage. Thus, if you have any info to share about successful treatment, type of chemo you had or choose, recurrence, and the way you cope with the disease, I will be happy ti ear from you😉. I’m writing this post today with the hope that I will also be able (in a couple of months) to give a positive and encouraging testimony to anyone who is dealing with an OC carcinosarcoma ovarian cancer.
Thanks for reading me😇.
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coconut123
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Hit, I was diagnosed with ovarian carcinasarcoma in Dec. 2016...3C. Metastized to the peritoneum. Complete removal of everything. 6 rounds of taxol/carboplatin...dose dense. Had some issues with low WBC, and that shifted my schedule somewhat. But overall I did not have a bad chemo experience....worked straight through, never missed a beat. Post chemo, scan showed no evidence of tumors, CA 125 fell to 6 . CA 125 was approx. 690 before surgery, post surgery 195, and then post chemo 6. I completed chemo in July 2017. Then went to 3 month internal exams and CA 125 blood tests. First two stayed at 6 and 7. My last one trended up to 26. I am re-doing it this week to see if it was just a fluke or if the trend is indicative of something more. Have not re-done the scan yet. My oncologist has indicated he cannot find evidence of tumor growth on internal exams.
I too, found the info on the internet very scary....but please remember most of it is very old and does not seem to be reflective of recent improvements. Yes, our cancer is very icky! But we can only move forward, do what they tell us to do and hope for the best. I have a tendency to be a very realistic person .....want to know as much as possible...but at the end of the day, we live one day at a time.
Take a deep breath, life goes on....challenges await. I will be thinking of you...wishing you the best. All my best,
Thank you so much for your reply Gloria. It is encouraging for me to read your post given that things are good for you since the end of your chemo. Its great! You are right in saying that we have to live one day at the time and that the info on the net should be consider carefully. Thing is that it was the only info I was able to get so far on the carcinosarcoma but with your experience and that of others, I will hopefully be able to see things differently and more positively.
When you get a moment, also pls go to the website for GCS Project. A lot of good information there. It is affiliated with Dr. Michael Birrer, one of the most knowledgeable oncologists re carcinasarcoma.
Hello, I was diagnosed with ovarian carcinosarcoma Stage IIIC, grade 3 in January 2016. My diagnosis was confirmed from a biopsy taken December 2015 with a CA-125 of 1250. I had four cycles of carbo/Taxol initially as the tumour was considered too large to viably operate. After the successful operation, no visible disease, I had a further two chemo. No evidence of disease and a CA-125 of 35. I since recurred and have been on a trial (Avelumab) and recently also have had weekly taxol. I am now hoping to shortly go on another trial. Apart from some peripheral neuropathy of hands and feet, I have little if any side effects from either the chemos or trial drug.
It's true the cancer is considered aggressive and because of its rarity it's unclear how best to treat it but you have a great deal going for you in that it has been caught so early without spread. Are you being treated in a major cancer centre? I think this is essential. If not, ask how many other carcinosarcoma patients they have treated and if other oncologists have been consulted. You could always seek a second opinion especially having regard to keeping the remaining ovary. Just ask for the reasoning to keep it, all the pros and cons.
The information on the internet is usually out of date if for no other reason than five year survival rates must be for patients who were diagnosed well over five years ago, allowing for data collection and presentation etc. Things move quickly in the cancer drug and treatment field. I think carcinosarcomas used to be treated as sarcomas and now they mirror the epithelial carcinoma route.
So I've been well for two and a half years and with a Stage IIIC diagnosis. I think the first report I read on the internet following diagnosis, said seven months survival. This before I'd learned to first read the date the report was published.
Thank you for the information and advices January-2016. Its good to know you have been well since 2 years and that you had very few side effects from the chemo. I hope things will be good for the trial you are on now. As to myself, given the city I actually live in, I’ll be treated in a hospital associated with a specialized cancer unit of another bigger hospital. I kept my right ovary because the gyn that performed the first operation was not a gyn-oncologist and she did not want to put me to menopausis. However, my onco told me that that the comittee of oncologists who meet to discuss my case are now thinking about removing the right ovary after they’ve seen results of the first 3 rounds of chemo. I’m seeing my oncologist again in a week so I’ll definitively questionned her about the other carcinosarcoma cases she had seen and treated.
I don't have the same type of ovarian cancer as you, but I do have another rare type, so was frustrated by being unable to find much info on the internet. And when I did find something, it could be out of date, too scientific to easily understand, or scary. Some people suggest avoiding dr google because of this, but I was still tempted to keep looking. Eventually someone on this site with the same type as me pointed me to an organisation doing research into it, which has a useful & informative website. So I hope you find good help & info. Di
Hi Di, I think its a good idea to be careful about the reading on the internet, which I’m planning to put aside for the next few weeks. As my chemo treatement are starting in 2 weeks, I’ll concentrate on getting through them now.
I think that's a great idea, Coconut. Just concentrate on yourself and chemo. Pop in here to get tips if you need them on dealing with symptoms associated with the chemo (there's a powerhouse of practical info here, like dealing with constipation, neuropathy (if you get it) etc.) but otherwise, try and quiet your mind and just deal with you. Hugs.
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