Unknown primary cancer

Cancer of unknown primary (CUP) is when cancer has spread, but it is not known where in the body it started from. This is a place for people affected by CUP to get together, ask questions, share experiences and support each other.

How long for answers?

northern gypsy
Posted by

Hi.  I am new here. 

2 Weeks ago after routine tests on my autoimmune liver disease and bowel disease, my Gastro said that my known disease has progressed so fast of late and my tumor markers are now continually high that he has spoken with a Hepatologist and their major fear is 'Occult Malignancy'.    He said it was cancer and thought I should prepare myself whilst he arranged further tests and referred me to specialist doctors in a different hospital. 

I looked in the type of cancer and found it was CUP... I was shocked beyond belief but thought best wait for confirmation. 

I had a scan on the trunk of my body...  forgotten the name but Gastro said that for 'his part' he could not see anything so has sent it to hepatologist and pancreatic specialists...    I asked if I could rule out cancer but he says not. 

This was 2 weeks ago... I am at my wit's end waiting. I am a single mum and feel so poorly. I am having to leave my home because I cannot afford it now not working and I just need answers. 

Please can anyone tell me how long they normally take to get answers?   Apparently I am complex because I have so many different illnesses so there are 'crossovers'..  Does that mean that I have to wait while they all find time to get together and discuss me? 

I am presuming they would not tell me this news lightly and I do need to prepare for the worst.  My tumor markers have been raised for months now and it was me that brought it to their attention to start with..   I am a little scared that the waiting and trying to be positive is not doing me any favours..

Sorry if I have posted on here prematurely... I just cannot get anyone who understands me. Family are annoying me and saying stupid things and friends avoid me because I am moody and irratable. 

Any help and advice welcome and I hope everyone here is doing good xx

latchbrook
Posted by

Hi and a warm welcome to the online community although I'm sorry you've had to find us.

Waiting for results and a diagnosis is extremely stressful and I wish I could tell you how long you'll have to wait for but, unfortunately, I can't. It depends on lots of things including how many tests it takes before they have a clear picture of what's going on. You might find this information on tests and scans for CUP helpful in understanding what tests you might have.

Once all the test results are back there will be a multidisciplinary team (MDT) meeting where a group of doctors and specialists in treating CUP will get together to plan your treatment. After this meeting you should have an appointment where you will be told what the treatment plan is. This is also your chance to ask questions and you might find these suggested questions useful to print out and take with you. It's also a good idea to take someone with you as I can guarantee you won't remember everything that is said and two pairs of ears are better than one!

I hope you don't have too much longer to wait and do come back and tell us how you get on.

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

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Sunflowers15
Posted by

Hello Northern Gypsy, so sorry to read of your ill health. My husband was diagnosed with CUP over 2 years ago. The time for final diagnosis I.e. been told he had cancer and given the final diagnosis of CUP took approximately 3 months for us. It was a frustrating and very stressful time as we didn't know what was going to happen. It took this long due to extensive but necessary searching for the primary as ultimately treating cancer effectively  is improved by knowing where the primary is, knowing what type of cancer and where it started. He had a lot of different scans and biopsies taken from a few areas despite all this they never found the primary but have a strong suspicion from the spread of the cancer that it started in the head and neck area and thus treatment was finally planned with this in mind. I hope you get some answers soon.Macmillan were really extremely  helpful in regards to financial advice you may want to contact them in regards to this. Take care x