Carcinoma sarcoma reoccurrence

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Hi, 

Update on my journey, I was diagnosed with carcinoma sarcoma after having a hysterectomy to get rid of a tumour that was thought to be contained i have just been told it has cone back. I have a 10cm tumour in my pelvis. I am devastated. I only had my op in July and it's back all ready. They say they can't do any more surgery so will give me chemo to shrink and manage it. I'm very scared as its came back so so quick. Just wondering if anyone else has had the same. TIA

Lisa

  • Hi Lisa, aww I have been thinking about you today as I remembered you were getting the results of the CT scan, just to say I’m sorry it’s come back so quickly :( and just to say I’m thinking of you and hope you get through this quickly and the chemo goes well to sort it all out for you lots of love xx 

  • Thank you soo much, I'm in a bit of shock at the minute and just hoping that the chemo does its job. I've been told from the start it's an aggressive cancer but wasn't expecting it to come back so quick. Can't help thinking that if my histology results hadn't taken 3 months to come back I would of been well into my chemo and this tumour wouldn't of had the chance to grow xxx

  • Hi lisa yes it’s normal isn’t it to go back on what’s been happening where are you based and which hospital is it as I am sure you said from North west ?

    xxx

  • I had my operation at Liverpool Women's whonwere amazing with me. My surgeon was great just the histology part let it down. Apparently mynwomb was seen by 12 pathologists and went all over the country as they couldnt fugure what cancer it was. I am now under Clatterbridge at Wirral xx

  • Hi Lisa

    I am sorry to hear that it has come back so quickly. I can understand how devastating it must feel. 

    There have been other ladies on here who have had recurrences and the chemo has been effective in dealing with them. They have had the carboplatin/paclitaxel regime and it has got them to no evidence of cancer. Although surgery is not an option for you at the moment, it may well be that the chemo will effectively do the same job, whilst mopping up any cells who body wise. Sometimes people can get to the stage where the chemo reduces the tumour size to one that can be surgically removed. There are also have treatments that can be tried if needed to manage the cancer. So please do hang in there. 

    The Support Line is there for you as well, if you need to chat. 

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thanks Jane,

    As you can imagine my head is all over the place atm. They are going to ring me back tomorrow to tell me if my stomach needs draining before they start the chemo as there is a lot of fluid in my abdomen too. I just hope they can do this this week then I can start my Chemo ASAP x

  • Hopefully they will be able to drain the fluid and that should make you more comfortable.

    Your head is bound to be all over the place at the moment. Try focussing on one day at a time. Today rest up and do something that you feel up to. Tomorrow - its finding out about the fluid. I would imagine that if they are going to drain it- it will happen quickly.  

    As your chemo was last week, if they are keeping it all the same, then you would be due again in two weeks. By then, anything else should be sorted and you will be back on track. So the fluid is a blip, between the chemo sessions. And blips are not uncommon. I remember being admitted for an infection on one occasion and then had problems with bloods on others and all were resolved in time for chemo to be done again. 

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Yes I'm hoping that tomorrow they say they can drain the fluid this week. I have not started the chemo yet as I had a reaction to it last week. I was due to have a rechallenge today but that has been cancelled now. I just want it started asap as the tumour seems to be growing at a quick rate and i need the chemo to start shrinking it. Just hope I don't have another reaction. im trying to take it day by day but it is so hard when I know this thing is very aggressive and every day that goes past is giving it time to grow and spread. it is nice to hear of success stories I think I need to hear more of them as at the minute my thinking is very negative. thank you so much for your response its so nice to know people are there to talk to. It makes me feel a lot better. x

  • They can give you medication to help prevent a reaction or alter the chemo. It has happened to a few ladies on here, seems to be altering the paclitaxel to one that is similar, or changing the infusion rate can make a difference. Some ladies have had just the carboplatin. I remember my consultant reducing my paclitaxel due to issues and she said it was fine to do- she said to think of it like carboplatin was the cake and doing all the hard work and the paclitaxel was the icing on the cake- you could reduce the amount of icing and it would still be cake. 

    It is understandable that your thinking is negative at the moment- you have had a lot happening, with the diagnosis, surgery and then the issues with pathology working out what type the cancer was. Lots of delays and then a reaction. And now a recurrence. But I hope that things can get back on track for you this week.

    I think also that most ladies on here are people that are undergoing diagnosis and treatment- many of the success stories are likely to eventually move on from the online community- or just pop on occasionally. So the proportion that are on here tend to be the ones going through it rather than to hear regularly about people who have successfully been treated. 

    My carcinoma sarcoma was diagnosed April 2022- I am still here. There are also ladies with other high grade cancers also still here. Hopefully once that fluid is sorted and you have a date for the chemo things will feel a bit more positive as you will be doing something proactive in dealing with the cancer- I always liked to feel I was actively doing the treatment. Fingers crossed you get that phone call early tomorrow about the fluid and then maybe ask when chemo can begin again.

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thank you, I'm hoping the chemo can start again next week. I think they are just going to try the same dose again but with more pre drugs. They also said they will sit with me incase I have a reaction again. I only lasted 7 minutes last time haha. They were going to try the carboplatin but if I'd of had a reaction to that they would of had to give me adrenaline as I had to much Piriton and they didn't want to do that. I'm keeping everything crossed that I don't have a reaction and my body accepts it this time. I have a face to face appointment on Monday to I think to go through the scan results so I will ask all the questions I have then x