Carcinosarcoma

[Annasp]

I have been diagnosed with ovarian carcinoSarcoma stage 3 c. I am told it is quite rare. Does anyone have any experience of this.

[January-2016-UK]

Hello, I have ovarian carcino-sarcoma, stage 3C also. I had my full diagnosis from a biopsy, in January 2016 although it was known from November 2015 that I had ovarian cancer, but not the type.

What is your treatment plan?

[Annasp in reply to January-2016-UK]

Hi, It was going to be delivered bulking surgery but due to previous surgery there are huge complications and the surgeon said I may be worse off than now after surgery,though he is willing to give it a go if I really want to take the chance. I decided not to have the surgery particularly as I am worried re the permanent stoma I would have. I am seeing the oncologist next week and I think it will be on and off chemo. The surgeon said this would give me about 2 years which did shock me as it isn't long.

Thanks for replying.

[January-2016-UK in reply to Annasp]

I had for four doses of carbo / Taxol before my surgery as the tumour was considered too large to safely operate. It may be that after a few doses of chemo, surgery for you may be less if a problem.

You might also like to consider a second opinion regarding surgery. There are a number of posts here regarding a Prof Fotopoulou who seems to have worked surgical miracles.

[Btte]

Hi Annasp I have same diagnosis, have known since July 2012. 4 rounds of chemotherapy later I am still battling. I don't know details of this type I take my life one day at a time and never Google. The knowledge I have comes from things learnt on this site. Love Bridiexx

[thomas62]

January-16,

You are not a statistic - medics quote statistics! Many ladies have survived much much longer than the statistics (which are generally out of date anyway)and are still her with us.

Best of luck with your treatment and hope it goes well.

Gwen xx

[thomas62]

Apologies - I typed in January-16 when my message was for Annasp.

Need to get my glasses on!

Gwenxx

[Cindyinpg]

There is an excellent Facebook group for MMMT here. facebook.com/groups/carcino....

[Jan76]

Hello there ,

I was diagnosed with stage 1C Carcinosarcoma in 2012 and had the gold standard treatment of Carboplatin and Plaxitaxol . I can endorse the group on Facebook which was set up by someone here in the UK but there are a lot of ladies from the states on there too .

My first port of call for help and Info was the MMMT web site which is very good ... Again mainly used by those in the states but it has a lot of information on it .

There is a nother chap here in the UK that specialises in Carcinosarcoma but with out looking up stairs .... And recovering from a broken foot ... I am not sure if I kept his name .... Will see if I can find my notes ...

I got my 5 year discharge last Feb 17 .... Have to say my GP was on the ball with my care ... She knew something was amiss but little did we know what but one night in severe pain I was admitted to hospital and tests done ... I was waiting to see a consultant by out patients app . CA125 was never a marker as never raised .... By the end of my weeks stay they had enough info to say Ovarian cancer stage 1 but of course they didn't know what type.

Thinking about you ... Keep asking questions ....

Jan

[Elizabethe]

Hi Anna,

I am sorry you are dealing with such difficult news. Yes, our diagnosis is rare but there are quite a few women on here who share it. You're not alone. And OC is very treatable. The survival statistics can sound shocking but it sounds like your surgeon has been a bit brutal. Statistics are just statistics and often out of date. . I was diagnosed three years ago, still very much here and not leaving anytime soon. There are new treatments being developed all the time. My own oncologist is really positive about long term OC treatment and hopefully yours will be the same when you meet him or her.

Like January above I had adjuvant chemo (chemo before surgery) to make surgery possible. But even if surgery is not possible for you, the main treatment for OC is chemo which usually works well especially for high grade (grade c).

Not all surgeons are experienced in dealing with OC and it's definately worth finding one that is a specialist in gynaecological oncology. You can ask to be referred to any of the leading cancer centres in the country.

Of course this is a scary and difficult time for you and I feel for you very much. Best wishes with your treatment and I hope all goes well

Elizabethe x

[gmangen]

I also have stage 3 c ovarian carcinasarcoma. Diagnosed Dec. 2016; debulking surgery Jan 2017 , followed with traditional 6 rounds of carboplatin/taxol. Chemo finished in July 2017. . See gyn oncologist/surgeon every 3 months now. So far so good.

Please also see GCS Project website, specifically for carciasarcoma. You will find hope and encouragement there in addition to this website. These ladies give good advice not to google the disease. Stay in the present with the dedicated blogs. Good luck.

[Sassysal]

I was diagnosed with carcinosarcoma in 2014. Mine was a 5" mass on my ovary which was removed, but because it was stage 3, I have had a variety of chemo's since. Been in and out of remission, but it is now in my liver. Have had multiple procedures on my liver, but, as the quality of my live is diminishing, I have stopped all treatment, and am in hospice care. My oncologist agrees with my decision, and agrees that I've fought the good fight. I gained 4 extra years I may have had otherwise. Just fight this as long as you can........prayers for you... Btw, and in Michigan.....Sally

[January-2016-UK in reply to Sassysal]

That's a great thought, "fought the good fight and gained an extra four years." May you be pain free and happy. Thinking of you Sally.

Best. Helen

[AlanJJMurphy]

Hi Annasp. I am deeply sorry to hear you are going through your illness. My wife was diagnosed with the same stage ovarian cancer in August 2015. What a journey... Ups and downs. If there is any we have learned is that... how you are feeling does not reflect what is going on inside you. When you things are good, they are bad and when you think things are bad they turn out to be good.

We were given 4 years upon diagnoses. remission of 16 - 18 months then it will come back.

She has aggressive carcinoma.

This is what happened.... Well, the first thing we did was to sign up to trials....

August 2015 - Diagnoses

September 2015 - Carboplatin/Carbo-taxol

January 2016 - Debulk

March 2016 - continue with Carbo-taxol

June 2016 - AVASTIN was added in combination with the chemo.

(Avastin starves the tumors of a blood supply and oxygen...)

Scans showed that some tumors were shrisking and some were growing

Chemo was changed to Gemzar (gemcitabine) with Avastin

We found out that this worked in parts.

Then they changed to Caelyx: Doxorubicin. This worked for a while too. There was mixed results on the CT scans.

We were told that the chemo only had limited results.

We were told on our wedding anniversary in 2017 that she had stopped responding to the chemo treatments. There was one more chemo they used which was Vinorelbine (Navelbine®) which served its use for its expected duration of 6 months.

Sue is now at the terminal stage of the illness. 6 weeks to live..

It is a roller coaster of a journey. Remember!! It is different for everybody.. Sue was lucky in that she suffered very little pain along the way...

I wish you the very best. God Bless...

AM

[2002chevy]

I also have stage 3c low grade ovarian cancer. Diagnosed Jan 23 after debulking. Headed for chemo tomorrow. Really nervous about chemo. They got all cancer out except micro scopic pieces. We are going for cure.????