Hi, this is all new to me.
At the start of October I was diagnosed with adeno-CUP-syndrome. After numerous CT scans and MRIs they still can't find the primary. Next week I am going for an assessment for a pet scan in a last ditch attempt to locate the primary.
Whilst being English I live in Germany, with my wife and 9 year-old grandson.
The cancer (God it's hard to use that word) was found on a lymph node by accident during a routine scan for my COPD and Emphysema which I also have.
The secondary tumor found measures 3.6x3.6x2.7cm and wasn't there in July so it seems to be a little bit aggressive.
I am finding a little bit hard to accept I have cancer and if I am honest I still don't believe it, although there appears to be no doubt in the mind of the specialists I have seen.
The problem is at the moment no one will say what the future holds. All I want is a black and white answer which no one can or will give.
Is any one else dealing with CUP, does it get easier to accept.
Thanks for reading.
Bob
Hi Bob and welcome to the Online Community, although I am sorry to see you finding us and so sorry to hear that you are on the cancer rollercoaster.
I was diagnosed with my type of Lymphoma in 1999 and still have moments were I get surprised that I was diagnosed.
Getting clear information is the best way forward and let’s look for your team to get to the primary.
A cancer diagnosis can bring a lot of stress, confusion and questions on but talking with people who are on the same journey can help a lot.
Can I direct you to this link to our very supportive Unknown primary cancer group as this will open up your concerns to a wider audience who know exactly what you are going through at the moment.
Just follow the link above, hitting ‘Join the Group’ tab just under the main group name, then go to the 'Start a Discussion' tab and set up your own Discussion and introduce yourself to the group - you could just copy an paste what you have in this first post.
All the best.
