processing a carcinosarcoma diagnosis

You are in shock, it's big news and not the news anyone imagined they'd ever hear. I remember feeling really rough and having a lot of pain. Do menion it to your nurse to be checked just in case it's something sinister.

In the menatime focus on seeing friends and chatting, getting fresh air every day and eating as healthily as you can. Getting myself as physically ready for the surgery and treatment ahead made me feel like there was at least something I could be in control of. 

Once you have a treatment plan / things start moving fowards you will feel a bit better, 

Thank you very much for your reply  xx

Hi

It is a worrying time for you and I remember feeling pretty awful at the time. 

Whilst it is understandable to have some physical symptoms from the anxiety, I would recommend that you get some medical advice regarding the chest pain and headaches. If you are experiencing chest pain- for whatever reason- this needs checking out. Why not give NHS111 a call. You are not wasting anyone's time- chest pain is a symptom that needs evaluation. 

You could also give the Macmillan Support Line a call first if it would help to talk things through.

Jane

Hi,

I too was diagnosed with carsinosarcoma last Tuesday,had cat scan and an mri scan today,so don’t know much else yet.I know they say don’t google it but ya do,don’t ya.I wish I hadn’t,I’ve started to prepare my hubby for when I’m gone! It reads so depressingly,anyone have any good news on this shitty disease????

Hi Faydas, now you can see why it’s advised not to Google, even though it’s understandable, as you’re extremely likely to scare yourself and get out of date, irrelevant or even plain wrong info! There are a number of us here who’ve been through a diagnosis, operation and treatment - and are still here! 

Hi Faydas

Welcome to the Womb group. 

I am sorry to hear of your diagnosis of carcinoma sarcoma. I had the same diagnosis in 2022. If you click on my name, my profile will come up. 

I am still here 3 1/2 years post treatment. 

Although carcinoma sarcoma can behave more aggressively than other types of endometrial cancer, it does not necessarily mean that it will. The normal treatment (as long as medically possible) is a hysterectomy. This is normally followed up with some further treatment just to make sure. 

Although it is a mixture of 2 types of cancer cells, it is treated as an endometrial cancer and as it normally responds to the same treatment. Where it is different is that follow up treatment is normally done at an earlier stage. 

It is not a uterine sarcoma which is a completely different cancer. 

It is always tempting to google when first having a diagnosis but it is better to speak to people who have been through the same diagnosis and who have come out the other side. If you do want more information then stick to reputable sites like the NHS, Macmillan and Cancer Research. These sites are regularly reviewed to make sure the information is up to date and accurate. 

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

Jane

Thankyou,Your journey has certainly lifted my spirits,I will await scan results with more hope now.xxx

Thankyou,I will stop googling now! Onwards and upwards,ready for the fight.Will come here for regular inspiration.xx

Try to think of the scan results as a means to fine tune your treatment. They need to know exactly where any cancer is to be able to effectively treat it. For carcinoma sarcoma and some of the other type 2 cancers its normally about surgically removing the cancer and then making sure no stray cells are left behind with adjuvant treatment. Even with some of the more common endometrial cancers- it is normally still surgery and then sometimes follow up treatment. The main difference with the type 2/grade 3 cancers is that the follow up treatment is normally offered from early stages. 

If you go on to have surgery and almost all endometrial cancer is treated with surgery first the post op results will show a final grade/stage and some other molecular details which will determine which further treatment will be best for you. 

Do let us know how you get on and if there is anything you need, then you know where we are. 

Thankyou.My consultant said it would probably be surgery first,then chemo to follow dependant on the test results.I will certainly be keeping in touch as I go through this,it’s helped already so many thanks again.xx