I was diagnosed with 3 c carsinosarcoma in Aug 2017, didn't have surgery, had 18 weekly chemo taxol/carbol. Chemo finished may 2018. Since then I have remained stable with 3 monthly scans and have been well.
Lately I have not felt quite as well and am able to eat only very small amounts before feeling very full. I wondered if it could be ascites. Does this sound like ascites?
Sorry I meant to add I would be grateful for any advice.
Hi, I had ascites at diagnosis. My stomach was bloated / swollen and although I'm quite plump I looked increasingly pregnant. It was hard to the touch. I was only able to eat small amounts.Have you been in touch with your oncology team; I'm assuming you are asking for urgent appointment, scans etc. Really hoping this is something else and you remain in remission, Sara xxx
When I was first diagnosed with OC I had ascities. I didn't realise what it was at the time except that my abdomen had swollen hugely and when I went to the GP she said I looked about 9 months pregnant, however she didn't make any connection at that point. It was really uncomfortable e.g unable to eat large amounts, painful constipation etc.
I went to A&E two days later as I was in so much pain. They diagnosed me very quickly by means of a scan and the ascities was removed (6 Litres).
When I had a reoccurrence about 2 years later the ascities came back over a few days and I just went to A&E again and was readmitted to the oncology ward. I knew it was back as my clothes became very tight and I had episodes of vomiting.
Hope you manage to get things sorted. I'm afraid my GP was not well informed at the time so I never went there again. All problems and help I have received has been through the wonderful oncology department at the hospital I attend. Take care xx
Hi mrstadpole, Thank you for your reply. I am sorry you have had such an awful time with the ascites. I don't think I do have it really, my stomach isn't to swollen it was more about not being able to eat much, I am full so soon,but I think I am being over anxious. I will go to go if I continue to be concerned.Anne x
It was ascites that led to me going to my GP initially and that eventually resulted in my ovarian cancer diagnosis. I was bloated and as others said looked pregnant because it is in your abdomen and solid to the touch. Also I gained weight despite eating less because each litre of fluid weighs a kilo. My GP diagnosed it by the echo noise when she tapped my tummy and an ultrasound confirmed it. Hopefully it is something completely innocent going on for you but get it checked out xx
Hi Modini. Thank you for your reply. From reading your symptons I think I am being h over anxious as my stomach isn't all that swollen, it's just the getting full so quickly which was one of my symptoms when first diagnosed. I will wait and see how it goes and see the go if I am still anxious.Anne x
Hi Sara, I am 4 years in with this. I’ve had my stomach drained twice almost 8 ltrs of fluid each time. My stomach is currently swollen and I’m having an emergency scan in Friday. I haven’t been able to eat for over 5 weeks If I attempt it I only throw it up some time later, bowels haven’t been working either. I feel for you with all the discomfort. You need to speak with your Onc. or nurse. I don’t think they realise the huge discomfort we endure. You’ll feel so much better when it’s drained. Thinking of you.
Hi Amethist. Like you I was diagnosed with ovarian carcinosarcoma stage 3c in 2017. I did have full debulking surgery and then six treatments of carbo/taxol. I was NED for two years and then a recurrence in 2020. To date I have had no sign of ascites🤞. I had a period when I felt full quickly after eating plus nausea but it wasn't ascites it was to do with my electrolyte levels, so I can't help you there really. However, like others have suggested, please speak to your Oncologist or nurse as there could be other reasons. Ask for a CT scan but please get it checked out. You mentioned you didn't have surgery. May I ask, was this not an option. Hope I am not raking over old coals. I hope you get this resolved quickly. Hugs. Jackie
Hi Jackie thank you for replying. When I think rationallyI am being over anxious. Because I have had such a good run I keep expecting a recurrence which is making me over anxious.
're no surgery, because there were so very many nodules of disease spread over a wide area in addition to the main tumour, the surgeon said he wouldn't be able to get all of them , it would also require a stoma and overall I could come out of it worse off, though he was willing to do it.
It was a very difficult decision and I did aganise over it. However I decided not to do it. fear of the stoma was a factor, also that he would be leaving quite a lot at disease.I
Hugs Anne
Hi Anne. I was warned I might have to have a stoma during surgery. I asked for a resection if necessary and they did that, successfully, but the wound got a resistant infection and my bowel shut down so I ended up with emergency surgery and a stoma anyway. In defence of stomas (mine's called Sid) it's not so bad and it did save my life. I only had to make a few minor adjustments to my life and things got back to normal very quickly. There are some situations these days where it is a positive advantage to have a stoma 🤭. At my recurrence I was in a similar situation to you. There was a tumour close to my bowel and lots of nodules all over abdomen and a few on liver and spleen. They offered ultra radical surgery but there would have been lots of complications not least from the resistant ecoli infection. Like you I decided the not to go ahead; the risks seemed greater than the advantages. Chemo, however, has shrunk the tumour and nodules significantly and some have disappeared. To date disease appears to be stable.
Your feelings of anxiousness regarding a recurrence are quite normal. I don't think many of us could say we don't have that little niggle in the back of our minds. However, if you are at all concerned, I would get it checked our with your Onc - better for your peace of mind.
How do you find things with carcinosarcoma? I know it's fairly rare but there are a few of us posting on here. Did you respond well to chemo? Doctors couldn't tell me much so I have been trying to keep up to date with any research/trials. It's a crazy journey we have embarked on but I am going to deal with this little invader on my terms. Let us know how you are doing. 🤗 Jackie
Hi Jackie . Sorry I have taken so long to reply to you. Hope you are still keeping well.You asked how I responded to chemo, I was very fortunate the tumour shrunk quite alot and also some of the nodules. I finished the chemo in May 2018 and have had no further treatment since. I have had 3 monthly scans and it's been stable each time . My next scan is next month, so as always I am a little anxious.
When I was told it was carsinosarcoma I looked it up and It said it was very aggressive, however so far it hasn't been.
It's difficult to find anything out about it and the oncologist told nothing except that it's rare. Thinking a out the future I asked about available trials and was told none because of its rarety, little research h has been done.
It's good to find someone else with carsinosarcoma and who also hasn't had the surgery. Perhaps we could keep in with if that's ok with you.
Anne x
Yep I agree with you that carcinosarcoma is not, at the moment, as aggressive as I thought it would be. I was two years NED before my first recurrence. The tumour and nodules shrunk very well after 2nd line treatment but didn't completely disappear. I'm perhaps a bit further down the line than you but I do pray that you remain stable for a very long time. It might not be as aggressive as we thought but it's a persistent little devil. However I am still feeling quite well at the moment It's started growing again so I am in the process of preparing for third line chemo but also looking at trials at the moment.
There is a trial at Royal Marsden and may also be at the Christie in Manchester. It is the ATARI trial and lists carcinosarcoma as one of the prerequisite cancers for consideration for eligiblity to get in the trial. Cancer Research UK has a list of the criteria for this trial in their website, in plain English!
I have PM'd you - a more private contact if you need it. Hope you are still feeling well. Take care.
Anne, even if you don’t have a scores, please get checked out because not being able to eat much is a symptom on its own. Xx
I agree with Delia2 … I left it too late to report my symptoms and got into lots of trouble with my recurrence. Please report to your team, if it’s nothing that’s great but better safe than sorry xx
I had ascites when I was first diagnosed, it’s an awful feeling! When it got really bad, it felt like there was a cup of water sloshing around in my stomach. Try measuring your stomach with a string every morning. If you are gaining a cm or more each day, it will be easier to tell its ascites. Hopefully it’s not but it will at least put you at ease and give you data to share with your doc! I also found that when I was really anxious, eating became uncomfortable. Either way, talk to your doctor about all your symptoms. I’m rooting for you! 🥰
Many thanks for your reply,I will try the string thing , and see what happens it's a good idea.Anne x
Hi Anne,
I would gently but firmly encourage you to raise this with your Consultant or Clinical Nurse Specialist. This is a symptom in it's own right and they will know whether they want to bring you in for a closer look or not. It may be nothing, but if it is something, it is better and more easily treated now than later. If if it nothing, they will be able to reassure you - which I'm sure will help ease your mind. We have so many other things to worry about!!
Very best wishes, Annie xx
Hi Annie. Many thanks for your reply. I don't know the specialist nurse but I will mention how I am to my gp. I do think I am being over anxious which is unusual as I am not a worrier and It is really just the not eating much that has bothered me.Best wishes
Anne
Please contact your CNS or chemo team in the first instance, and also your GP, although you may have to wait for a referral if you go to the GP. The main symptom of ascites is bloating and you don't mention that, but loss of appetite is always significant and should be investigated.
My story followed the same as yours and suddenly I began to feel unwell. Symptoms exactly as Sassy answered you. Could only eat small amounts. Abdomen very swollen and hard looked seven months pregnant.put up with this asking for scan took two months to get them to agree I think because of covid this was end of last year. Eventually got scan cancer was all growing again and booked in for ascites drainage. 6 litres drained off felt better. But had to be drained again two months later. After four chemos fluid stopped building up. I hope this helps you. Good luck.
Hi iwillbeatit,Thank you for your reply I hope that things have settled and are more positive for you now. I am going to see how I am in the next few days and if no improvement I will speak to the gp. Best wishes Anne
Ascites
Ascites
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