Womb

Hi - I have carsinosarcoma grade 3- I had a hysterectomy and lymph nodes removed in June - my lymph nodes weren't cancerous but a later scan showed I have 2 lymph nodes in my pelvis that are- I am currently having chemotherapy and then will have radiotherapy. They have just done another scan as I am halfway through so just waiting for the results. Its very scary but all I can say is keep positive - It takes a bit of coming to terms with but there are people on here that are 2 years down the line which I find reassuring .

Hi its just how rare and aggressive it is having to wait a week to see if nodes are involed before my surgery its very stressful 

I know it is a shock and I am sure you are thinking the worst but you are in good hands and they will keep a close eye on you as it is so aggresive.

Hi Alibongo

If you click on my name, my profile will come up and it will show you my diagnosis and treatment for carcinoma sarcoma. 

I had my treatment in 2022. I remain well, have not had any recurrences. I was checked every 12 weeks for 2 years and am now on patient led follow up. 

It is scary when they tell you it is one of the more aggressive ones. 

Carcinoma sarcoma tends to respond to the same treatment as endometrial cancer but they tend to treat it more aggressively at an earlier stage to prevent recurrence. So for a stage 1a cancer of a lower grade, surgery may be enough but for a higher grade, some form of follow up treatment is normally advised. 

It can be stressful waiting for results but it is important that they know exactly what is going on and where so they can decide on the best possible treatment to offer you. 

If there is anything you want to ask, please do so.

Jane

Hi Ronny,

I am 2 years post treatment for carcinoma sarcoma and remain well. Have had 2 years of check ups, every 12 weeks and have now been put on patient led referral. 

I wish you well with your remaining treatment.

Jane

Hi jane I have carcinos sarcoma it that the same as yours or slightly different as nurse said it was very rare and I have to go to a different hospital for treatment x

Jane - your story has helped me so much - Thank you for sharing x

Yes, and yes it is very rare. Its a biphasic cancer and has mixed cells- carcinoma and sarcoma cells. It responds to standard endometrial cancer treatment but they tend to do the extra treatment at an earlier stage. 

I wouldn't worry too much about them sending you to a different hospital for the treatment, sometimes it just depends where the experts are. The main thing is that you get the most effective treatment. 

if the lymph nodes in your groin to turn out to have cancer in them, although the staging would change to stage 3- it is still very treatable and the treatment would likely still be the same. 

The treatment would most likely to be hysterectomy plus follow up treatment- either chemo, radiotherapy or both- but it will depend on your individual circumstances and wishes. When they look at the chemo and/or radiotherapy there are several genetic and other markers that they look into- and these would help decide the best approach. Mine was normal MMR, p53 wild type and oestrogen/progesterone positive.