Diagnosis

hi Jules,

Sorry to hear your news. It’s quite a shock to get something rare with, usually, a grim prognosis of 9-12 months. A lot of us experience very blunt feedback with little that can be done except for generic chemo that is highly unlikely to work.

Please read my previous posts.  9-12 months for cup is an average for everyone and is not specific to the individual. I’m aware of cup patients that are still going strong 5 years on with no treatment.  To be fair, there are also some individuals that expire within days of diagnosis. 

have a look on Cancer Research Uk for active trials. I’m on a trial at The Royal Marsden in London (even though I live in Manchester). This is an immunotherapy trial for cup. All 4 of my cancers have shrunk by over 50%.

One of the other guys on here (also Peter) has had several operations and is still going strong.

a positive attitude and a will to live goes a long way.  Don’t give up.

Where are you? Can you give us an overview of your partners diagnosis and where his cancers are.

best wishes

peter

Hi Jules

Sorry to find you here, but hopefully we can make this journey a little easier for you and your husband.  It sounds like a pretty rough diagnosis for your husband; certainly more so than my diagnosis.  My cancer was found in a lymph node and they spent around 15 months looking for a primary until they found one in my tongue - only for it to disappear again.

Generally I've been fit and well, only had surgery so far as there was no point in radio/chemo without a target for a head and neck cancer (at least in my opinion and my clinical team agreed).

Hopefully from the secondaries they will have a good idea what the cancer is (they did with mine) and be able to formulate a treatment plan.  It may be that your husband is never cured of cancer, but can live a good quality life with cancer - a lot of people do.

Hi. Hoping it's going ok with your husband. I too have CUP.  TWO years now with two lots of chemo treatment and I'm doing ok. I fully expect to have more chemo and whilst I'm not looking forwards to it, anything that gives me additional time with my family is worth it. Best wishes to you both