Carcinoma sarcoma reoccurrence

Yes I've tried ringing, they have said if I'm down on the list she will ring me. Not much help but all I can do is wait. I just feel loke all this waiting it less time I have to get it sorted xx

Oh my goodness, I wouldn’t be suprised if you are beyond frustrated right now, I know I would be. Don’t they have other CNS on shift? I took like 3 CNS numbers when I called the department a few days ago (unfortunately all of them were also off that day, yay.). 

Was your bloating the main red flag for your recurrence? Sorry if I’m asking these questions, you don’t have to answer them if you don’t feel up to it.

Anyway, I really hope they get back to you and discuss your treatment plan asap. I know how frustrating and anxiety inducing it is to keep waiting. 

I've just spoke to the consultant she has requested my Chemo now. I had a pressure feeling when I was going the toilet that was what started it. The bloating now I'm guessing is the tumours along with some swelling I think. Ask anything you like it's good to talk about it xx

Am so glad you were able to get hold of the consultant; it is difficult when we are waiting for things x

Hi Lisa, I’m pretty sure I’ve got the same cancer as you, but not in the pelvis (as far as I know) I haven’t come across anyone else who’s got this, so although it’s vile, I’m glad to have someone to talk to about it.

I haven’t updated my profile, so I’ll give you a quick synopsis: 2 years ago I was diagnosed with a high grade serous endometrial sarcoma. It took them ages (at the Bham Sarcoma Unit) to actually diagnose it because it starts as a carcinoma and then forms a sarcoma nucleus. At the same time I also developed a TN carcinoma in my left breast, which was completely unrelated to the endometrial sarcoma. I had 2 ops within 3 weeks - mastectomy then hysterectomy with ovaries. A month later I started chemo -Pacletaxol and Carboplatin for 3 months, followed by another 3 months of more chemo, can’t remember what it was now. I had a scan 6 months later, all clear. I later found out that the chemo was only for the BC, and nothing for the sarcoma, which I hadn’t realised due to a breakdown in communication between the two consultants-which is shocking.

Then a few months later I had some bleeding, the cancer was back in my vagina and the top of the cervix, but not yet to the pelvis, so in April this year I had an ‘exoneration’ to remove it all. I now have no vagina or bladder and a large part of my colon. I’ve been completely up sewn below and have 2 stoma bags. I’ve had 6 weeks of radio 5x per week, and now 6 months of Carboplatin and Caelyx to try and keep it at bay - because although they removed all visible cancer they couldn't get clear margins as it was up to the bone.

Id be very interested to know what chemo they are going to give you, and I’d also advise getting in contact with the Sarcoma Society - and every other cancer charity to see what trials are running, as you probably know NICE don’t have a recommended chemo drug for this. However, I heard from a previous consultant about a lady who had it in the pelvis and has been in remission for 4 years, so please try and remain positive. 
Julia xx

Just saw the consultant. My Chemo starts next Tuesday they are going to do 3 sessions and then scan me to see if it has worked. She examined me and said I did have a bit of fluid in my abdomen and some tumours that was what was causing the pain. She has given me some Steroids to help. Feel a lot more positive tonight xx

Hi Lisa

Glad you are feeling more positive. And not too long before chemo gets underway. Hope the steroids help.

Jane

Thanks Jane so do I. I'll keep you posted. And thanks again for being there xx

So glad you have a date now - hope the pain diminishes soon; thank goodness  the pain told you there was a problem to get checked out; why we should always listen to our bodies I guess. 

Yes definetly, i knew something wasn't right. Fingers crossed the chemo shrinks the tumours  xx