Hello I’ve just been diagnosed with Primary Peritoneal Cancer and as I have a very high tumour marker (CEA blood test =199) I have been told by Basingstoke Peritoneal Malignancy Institute that I will be in the 40% of people where it will come back after 1-2 years. I’ve been told that they can remove everything except the small bowel because you can’t live without this - so some of the disease will be left behind and then grow again - so my prognosis is not good at all unfortunately. Has anyone else been through similar circumstances to me? Thank you for reading this…
Hi Puntoelx and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I'm not a member of this forum but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.
While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
There is a lot they can do these days. Surgery, chemo and maintenance treatments are so helpful. We can have cancer and remission more than once. I hope the best for you. Let us know how your progress is going. I know it can be scary especially in the beginning. I’m glad this support site is here. It’s the only one I’ve found.
I have PPC stage 3C and had a high CA125 too. My doctor who is a serious person says at every appointment “this cancer likes to come back 80-90% of the time.” I was at 2 years at my lab test in on February 4th. My CA125 jumped from 4.0 to 35.0 in 1 month. My other CBC labs weren’t too good either. I have scans, labs, an infusion and an oncology appointment this month.
I am doing pretty well. When chemo was finished I felt lost. Now after 2 years sometimes I just have cancer treatment burnout. With the extra appointments and GP appointments I will have 11 appointments this month.
Diana
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