Newly diagnosed with ovarian carcinosarcoma

[Pinky-g]

Just got diagnosed with stage 3c Ovarian Carcinosarcoma. I had surgery last week where the doctor feels he got 99% of cancer. I start chemo in 2 weeks. Cancer is very rare and aggressive with not a great prognosis. Any one have any experience with this ?

[Heatheri1015]

Yes! Same stage...ovarian. I had my original debulking December 2017. That was followed starting January of 2018 with 6 rounds of carbo and taxol. I did very well for a year and a 1/2 and ended up with a recurrence which i had another debulking done.. that was followed by carbo textol and avastin. I recurred while on chemotherapy and went on to 5 weeks of pelvic radiation.

[Pinky-g in reply to Heatheri1015]

Hi Heather,Thanks for response. That’s the same plan I am on and will start in 2 weeks. I am still pretty sore from debulking and hysterectomy etc. I am only 10 days out so I guess to be expected. I was fortunate to have it done laparoscopically with robotics. Not going to lie that I am very scared especially after reading statistics but hearing other survivors stories give me hope.

[nettiebobs]

Can I ask why some have the debulking before chemotherapy and some prior to surgery and after?

[Heatheri1015 in reply to nettiebobs]

Surgery may not be an option up front due to extent of disease. So chemo first to reduce tumor burden, Surgery flowed by more chemo. 😉

[nettiebobs in reply to Heatheri1015]

Thank you for the explanation.

[Hidden]

Hi Pinky,

I’m sorry that you are going through such a tough time. Try not to read anything about OC, unless it’s on this site. Other information is dreadfully out of date and most likely not relevant to you at all.

I’m BRCA1. My OC was first diagnosed in 2015. I had TAH BSO Hysterectomy. Chemo 1 was Taxol, Carboplatin & Avastin. Recurrence 2018. I had a small op to remove a tumour from my liver. I had other bits & pieces, including lymph nodes. Second Line chemo was Carboplatin, Gemzar & Avastin. I’m fine at the moment. I’ve been on Olaparib since May 2019.

Hopefully chemo will work well for you. There are loads of treatment options these days.

I’m thinking of you and wishing you well.

Try to stay positive. Hopefully you have a good oncologist who will explore every avenue for you. Let us know how you’re getting on.

Anne 🤗

[Amerthist]

Hi pinky g. So sorry you have this rare type of cancer .It's really good that the surgeon was able to remove so much of it.

I was diagnosed with carsinosarcoma August 2017 stage 3 c. I didn't have surgery due to the spread of the disease, the surgeon didn't think he could get it all.I had chemo carbo/ taxol. I was very lucky as I had a really good response to the chemo. Since then I have been stable. I have had no further treatment but have a ct scan every 3 months ,so far it's continued to remain stable. I have been able to do all the usual normal a activities and feel reasonably well.

Because it so rare it's hard to find out much about carsinosarcoma but

Try to avoid googling ,its often out of date.

Hope everything continues to go well

Best wishes Anne x

[anjr1 in reply to Amerthist]

Hi Amerthist-congratulations first. Also, did you have surgery at all or was it just chemo?

[Amerthist in reply to anjr1]

Hi anjr1, I just had chemo, no surgery at all

[Pinky-g in reply to Amerthist]

Thank you Amerthist for your reply. I’m praying that I too have a good reaction to chemo. Will add avastin the second round. I am learning to not google and get my support from others who have this rare disease. Thank you

Lisa

[Audrey25a]

Hello. I have peritoneal carcinoma stage 3. Also high grade serous carcinoma involving the ovaries and omentum. Istarted with weekly chemotherapy - 12 weeks then a week before lockdown - how lucky was that I had - I had debulking surgery + bowel resection, hysterectomy and removal of peritoneal nodules. Followed by another course of weekly chemo. At the moment my CA125 are remaining stable. I am on a Olaparib. Which is not really my friend but as long as it keeps things at bay I will stick with it. Quite a few side effects.Audrey

[January-2016-UK]

Hello, I was diagnosed with ovarian carcinosarcoma just over six years ago. Also stage 3C. I had 3 chemo then the op and then more chemo. Note some of your replies relate to carcinoma which is not the same as carcinosarcoma but the treatments see the same. I’ve had numerous treatments and four different trials.

I’ve found the best thing is to try and live life as I did before diagnosis.Of course, trying to live life normally with pandemic restrictions isn’t easy. I remember doing very gentle exercises after my op. Good luck!

[Pinky-g in reply to January-2016-UK]

Thank you for your reply! Still healing from surgery. It’s been 12 days and still sore but everyday is a little better. I have first chemo February 10th. It helps hearing others stories

[Fifii in reply to January-2016-UK]

Can you tell us about your different treatments and trials? Do you know of any sites specifically for ovarian carcinosarcoma?

[Fifii]

We are in the same boat....where are you in the world? I was hiking three weeks after the operation....good to try to keep fit.