Hi all, I have previously posted but it has been a while now but would like feedback from today's appointment my mum has had.
Just briefly, mum diagnosed a couple of years ago with neuro endocrine cancer, no primary identified but significant liver mets. She has had three, I believe, chemo courses over this period of time and several Ct scans but also a Dotate scan down in London.
Now this Dotate scan identified mets also on L3, cancer in ilea loop ?and another area that started something like lymph something or other ( sorry do not have actual access to letter at this time ) and of course the significant mets from the liver.
She has been to Oxford to see specialist but this is too long a story to get into now but just to say at one time they were liaising with our local hospital in Kettering but not sure they continue to do so. Oxford did previously, from another scan type that there was a suggestion of cancer, possibly the primary in the small bowel however..... Kettering dismissed this because they said they could not see any evidence of this !
So today my sister and myself also attended the appointment, the outcome was that following review ct scan all remains stable and has done for past three appointments at three monthly intervals, good news I am not disputing. However, when we asked the question while this is good news does it apply to the other three areas identified from Dotate scan. Apparently not, the review ct scans she is having focus only on the liver mets and to be honest both the locum doctor and nurse initially didn't seem to know what we were talking about.
The doctor looked at the letter containing outcome of Dotate scan, the nurse said....yes this had come up before but we looked all around the small bowel area and could not see anything!!! This was not the point so we asked again, so while this is good news in remaining stable what's going on in the other areas.....no answer other than these liver mets are the most important.
I don't know what to think, mum of course is just so pleased she remains stable and that's it no need to worry about anything else and she is so positive I applaud her, but we are concerned so my question is should we be?
Hi susie60
Being left feeling worried and concerned after your mum's appointment is horrible so I can understand why you want to get some advice from the other members of this group.
As no one has come forward with a similar experience, you could post your question in ask a nurse and one of the specialist nurses will reply within 2 working days.
When you have a minute it would be really useful if could pop something about your mum's journey so far into your profile as it helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit 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.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
