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.

CUP

Clara J
Posted by

My brother tragically passed away aged 46 after a very short battle (just 25 days) from CUP. He started feeling unwell just 2 or 3 weeks prior to that and up to that point was very fit. We would like to raise money specifically for research into this devastating but rare “cancer” to aid speedy diagnosis and treatment. Does anyone know if there are specific charities carrying out research into this?

latchbrook
Posted by

Hi and welcome to the online community

Can I offer my condolences on the death of your brother. It must have been a tremendous shock to the whole family that he was only diagnosed a short time before he passed away.

I have looked online for you and found that the Cancer of Unknown Primary Foundation is trying to raise awareness of CUP so they may be a good starting point.

Sending a supportive ((hug))

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

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Clara J
Posted by

Thank you latchbrook for your kind words and for taking the trouble to look into this so quickly.

I would be pleased to hear from others who have been on the CUP journey before us.

 Thanks again CJ

Sunflowers15
Posted by

Dear Clara J, I too am very sorry to read of your brothers passing. What a shock for you all and how cruel life can be that the time between diagnosis and his passing was only 25 days. I had never heard of CUP until my husbands diagnosis over 2 years ago now, diagnosed at 43 now 45. Since before his final diagnosis when they were extensively searching for the primary and since then I have read up a lot about this cancer type. From final diagnosis we were painted a very grim picture, immediately told it was incurable. Basically it has been a hell of a few years and I know we have got more to come. I suppose my husband is one of the luckier CUP patients in that firstly treatment was an option and secondly he has been responsive to his treatment, not so much the chemo but the immunotherapy his oncologist had to fight to get him as he is a CUP patient. However all these treatments have hammered his body, despite mariculously been stable for 6 months after his treatment was stopped to rare life threatening side effects life is hard as like I said his body has been hammered with treatments, we know that it is going to grow  again and have been told that there will be very  little if any treatment options left available to him. I think it's wonderful that you would like to raise money for research into this cancer type to aid research into the speed of diagnosis and treatment as the time before the diagnosis of cancer and then finally been given the CUP diagnosis and the treatment plan was long and caused a lot of distress and resulted in agreat physical deteriation in my husband. By the time my husband finally received his treatment plan his cancer had grown extensively along with the symptoms. Good luck with your fund raising.

Clara J
Posted by

Hi Sunflowers15. Thank you for your message of support. I am so sorry to hear about the continual nightmare you are living through. Our own journey was brutal but very brief - perhaps we will come to see that as a blessing for my brother in time. To the layman, it is unbelievable that the cancer cannot be be identified quickly - if at all. I wish you and your husband very well and hope for stability and recovery for him.