Carcinosarcoma

Hi Gal68 and a warm welcome to the Online Community. When we get a cancer diagnosis of any kind our world seems to stop, anxiety and stress levels go through the roof but if anyone can hold your hand and reassure you on this scary journey the ladies here will. We're all at the start, in the middle or the end of what can only be described as a roller-coaster ride. The ride no-one wants to get on.

There are ladies here diagnosed with carcinosarcoma so hopefully they'll be along to chat. I myself was stage 1b, grade 3 serous (aggressive) I just had 3 x Brachytherapy sessions.

It’s always helpful to others if you write a little something (or a lot) about yourself and your journey to date. You can enter it into your profile (click on your username and select “Profile”) It’s helpful to other members with a similar diagnosis who can then hopefully answer your questions. It also means that you don't have to keep repeating yourself. You can amend or update it at any time. If you’re not sure what to write, just click on my username.

If you want to ask any of us any questions please come back and do so. There's always someone around and we can offer a shoulder to cry on, a hand to hold or listen to a rant, we’re here for you, you're not alone in this, we all support each other.

It might also be a good idea to download this booklet Understanding Womb (Endometrial) Cancer. I found it invaluable on my journey. 

Click on the link I’ve created to find out more information covering diagnosis and treatments for Womb cancer.

You might also find this link to what to take in my overnight bag useful for when you have surgery.

It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear. It's free to call on 0808 808 00 00  8am to 8pm, 7 days a week. Have a look to see what is available by Clicking here .

There is also an Ask an Expert section, but you should allow two working days for replies from our expert team.

Sending you welcoming hugs, Barb xx 

Hi Barb,

Thank you so much for your warm welcome and advice. I’m feeling overwhelmed and isolated despite having people around me. It’s impossible to talk to friends and family because everyone gets so upset. I will update my details. 
Take care.

G

Hi there, I’m not out the other side yet unfortunately ( still awaiting my treatment plan) but think we have a similar diagnosis. Totally understand what you mean about family and friends- confess I’ve stopped calls for a bit to breathe. I’m also struggling to stay positive at moment - it’s just such a total shock isn’t it? Keep expecting to wake up. 

I am also reaching out to people who are happily and healthily out the other side as I need that positivity - I know I can’t offer you that (yet) but I’m here if you need a friend going through it at same time xx

I have leiomyosarcoma which was in the womb. I had a total open hysterectomy including my ovaries and tubes. I do have lymphovascular space invasion but my sarcoma consultant said it doesn't need treatment as chemo and radiotherapy doesn't work. I am having 3 monthly CT scans and consultations probably for the rest of my life. The idea being that such regular scan will show up early and hopefully will be treatable. I asked if I should say that I have cancer or that the cancer has gone. He said that I am in remission but there is always the likelihood that it could go to my lungs or liver and it usually returns within the first two years. All my husband heard was remission and thinks that's it for ever. I spoke to a lady on here who also had carcinomasarcoma so I asked if she was under a sarcoma team but she said it isn't strictly sarcoma so she wasn't. I hope you get your treatment plan sorted out soon. Take care, Deb

Hi Cbwc,

Yesterday was a particularly low day for me, so you reaching out helped me to climb out of the funk I was in. Weekends for some reason seem so much harder. We try to fill the day up as much as possible and try to tire ourselves out.. anything to stop dwelling too much. My chemotherapy starts next week. Please do stay in touch. It would be good to have a friend to talk to. Let me know what is happening with you. Xx

Thank you Deb.

I need to hear these positive things. X

Hi hope you are well.  I have been told I have gone from a stage 1-2 to stage 3-4 because lymph nodes are bulking.  I too have bad days and get myself into a funk.  I am currently waiting to see if I can have surgery as I am high risk because of my weight so I may not be much help but I’m always here if you need a chat. X

Yes, definately. I have such lovely friends but it is one of those isolating journey's where you just don't get it until you get it.

Here any time you need to talk (rarely sleeping so don't worry about what time it is!) xx

Sorry to hear this. Have you had hysterectomy as yet or is that the surgery you're waiting to hear about? xxx

That is the surgery I’m waiting to hear about, I’ve had the pre op done, had a breathing test done and I have an appointment on Thursday for a heart scan then just wait to see if they will operate or not. X