I Need Some Questions Answered - Can You Help?

[Janeb]

Dear Friends

I was diagnosed with metastatic neck cancer, unknown primary in February 2009. Finding this website has been my lifeline.

After surgery and radiation I really began to research CUP and was utterly astounded by its invisiblity in Australia. As a health professional I decided that something needed to be done about this. CUP only features in the statistics. CUP in Australia is defined by the word 'lack' - lack of research, clinical trials, patient information and support, clinical guidelines, specialist clinics and pracitioners, lack of any representation, lack of public awareness, lack of a great website like Jo's Friends.

I have been in contact with key people and organisations around Australia. John gave me the encouragement to start to change things and now people are begining to talk about this cancer. I need your help. I have not spoken to one person to date who has CUP.

1) Can you suggest any strategies to contact other CUP survivors in Australia? I want to form a lobby group to push for a better deal for those of us with this diagnosis. CUP voices need to be heard. I have been unsuccessful to date despite putting my story on the web and through an article in the patient representative e-newsletter - no replies to either.
2)Do people in the UK actually get given a CUP diagnosis? I was told the primary could not be found and gradually, through my research, came to realise there was a group I fitted into - CUP.
3)How visible is CUP in the UK in terms of public awareness, knowledge of health care workers, availability of patient info etc?
4)Are there any CUP-specific clinics/specialists in the UK?
Maybe that's enough for now. I'd love to hear from you.

[John Symons]

Let me start by picking-up on Q2 and hopefully others will join in to answer your excellent Qs.

Cancer of unknown primary (CUP) does not have a discrete classification within the International Classification of Disease (ICD) . The ICD codes which will usually cover registrations of CUP are ICD C77 to C80. Unfortunately, as there is no agreed definition of CUP, these codes may not capture CUP, or people may be included within other ICD codes.

C77 Secondary and unspecified malignant neoplasm of lymph nodes
C78 Secondary malignant neoplasm of respiratory and digestive sytems
C79 Secondary malignant neoplasm of other sites
C80 Malignant neoplasm without specification of site

I know this is a somewhat technical answer but guess that you are used to the way hospital events are captured.This poor coding is part of the problem.

In reality I guess that many older patients, particularly those with co-orbidity who are not fully investigated, will not get labelled CUP for simplicity. I guess that some patients will be given a mets diagnosis in the hope that a primary will be found quickly; and some will be told about CUP. I have sensed a reluctance to use a CUP diagnosis as it can be seen as a failure of diagnosis and doctors, like all of us, don't like to be seen not to be able to answer the questions. So CUP has been swept under the carpet for too long! It should be a diagnosis in its own right otherwise patients will be marginalised.

The NICE Guideline on management and treatment of CUP that is coming out for England and Wales (end July) will increase the visibility considerably.It should help the diagnosis issue by establishing better hospital event categorisation but it will have no impact on the ICD codes that need WHO to change them. How does that happen!?

[Arcticnurse]

I can understand your frustration, trying to find other CUP patients. I contacted our Cancer Society (Canada) and waited months before I received a phone call from British Colombia. I live in Ontario in Eastern Canada.

Yes there are survivors but it difficult to find them. I finished my chemo two years ago and to date there has been no recurrance.

What did we do to survive this? That is my next question.
I had the gunshot approach - three chemos at the same time. It was very difficult . In retrospect I am glad I had it.

Dianne
Another CUP cake

[Janeb]

Thanks so much Dianne and John for your replies. It's great to hear from both of you. I have been trying to get a picture of CUP in other countries such as the UK and USA and I've now added Canada to my list.

Dianne, it's great to have contact with another CUP survivor. I hope you are continuing to do well.

Have you had contact with any other people with CUP? Is CUP visibile in Canada? Who are the experts in your country? Is there any sort of international CUP alliance?

I seem to have never-ending questions. It's my frustration at feeling so isolated!!

Thank you John for all the work you do. I feel less alone when I can tap in here and also have a read of what's going on in the UK.

cheers

Jane