CUP treatment

Hi all

My dad is currently receiving chemo for a CUP. He has secondaries in pelvis, ureter, lymph system and vertebrae. They know the type of cell but not where it originates from. 

Dad was diagnosed in November and is terminal but is persevering with chemo as it isn't having too much of a negative effect on him.

How do docs decide what is the best treatment if the primary is unknown? They have said surgery not appropriate as there are no tumours to remove, just lots of pockets of secondaries.

TIA

Lucie

  • Hi , I’m sorry to hear about your Dad’s diagnosis, it’s confusing isn’t it when the primary isn’t find. You mention that they know the type of cells but not where it originated.

    For me they did a biopsy from a lymph node and the cells most resembled melanoma for me although no original tumour on my skin was found. I found reading the Macmillan booklet on CUP helpful to make more sense of things, I don’t know if you’ve had a look at it, I’ll put the link in incase it helps. It explains things like a cancer found in the liver will have cells that look like breast cancer if that’s where it originated. Doing the biopsies and other tests, as well as knowledge where things usually spread to and the type of cells, gets them closer to knowing how to treat it, and they use their best prediction.

    https://www.macmillan.org.uk/cancer-information-and-support/stories-and-media/ebooks/understanding-cancer-of-the-unknown-primary

    I did not have surgery at first as too many lymph nodes were affected but the systemic treatment I had worked well in reducing the size of the tumours involved. It felt very unsettling waiting for 5hat first scan to see if the treatment was working. I’m glad that the chemo your dad is having hasn’t been to bad for him. 

    I don’t know if you’ve also joined the carers only group or family and friends group they can also be helpful giving you support as you help your Dad. They can be found by clicking the groups button. The ask an expert section or the Macmillan Support line may also be helpful if the CUP booklet doesn’t answer all your concerns.

    Best wishes

    KT 

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