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
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
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.
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.
