high grade cancer, but does not show well on CT

kimberly sue 63

Hi everyone, I have not been on for a while. I scanned the posts and there are so many new names.  I am on my 3rd recurrence. I have found that my cancer even though I am having symptoms and unstable CT it is not appering on my CT scan. I think this has always been the truth because I have had two surgeries and both times my surgeon was surprised on how much disease I had compared to the preoperative scans. Has anyone else had similar issues? Because my disease is not measurable, it makes me unqulified for most clinical trials. Kim

Tethys41

PET scan

Do you have the option of a PET scan?

kimberly sue 63

Yes I had a pet scan and it

Yes I had a pet scan and it showed disease right where pain is. The problem is that clinical trials won't accept pet scan. You have to have measurable disease from CT. Kim

 

lovesanimals

Dear Kim

I haven't had similar issues but am sending lots of good wishes and big hugs your way as you fight this.

Warmly,

Kelly

 

Tethys41

Measurable Disease

Kim,

Are you a member of Inspire?  A friend of mine is in a similar situation.  Evidently, quite a few women are.  Anyway, she recently started this thread on Inspire.  You might find it interesting.

https://www.inspire.com/groups/ovarian-cancer/discussion/exclusion-from-clinical-trials-due-to-non-measurable-disease/reply/7235517/?msg_activity=reply_posted

Good luck