Unknown primary, at least 3 different secondaries

Hi Hlta 

I'm very sorry to hear about your husband, this must be a massive shock to you both. Welcome to the online community.  I noticed your post had not yet had a reply so I hope you don't mind me responding, as I have had a different cancer. By responding it will place your post back at the top where it may be seen more more members of this group.

I can see that you have joined a few groups to be able to gather information and members experiences. Just to let you know, there are groups which may be helpful to yourself going through this. Here are some links

 Carers only forum 

 Family and friends forum 

 Supporting someone with incurable cancer forum 

If you feel you need to speak to someone about anything, practical issues, money issues please ring the Macmillan helpline, they are really good. This is the link to contact https://www.macmillan.org.uk/about-us/contact-us

Reach out for help going through this, there is lots of help and support available, it's just a case of knowing where to look and Macmillan will help with that. I wish you both all the best. Best regards.

A x

So sorry to hear what you are going through. I do hope they find the primary and are able to offer your husband some treatment. May I ask how old he is?

My husband’s journey started in exactly the same way with back ache, which we thought was a pulled muscle from gardening. Like you cancer was not even on our radar, but it turned out to be secondary bone cancer. Despite some excellent doctors and nurses they were unable to find the primary. 

You might find some useful information on this website https://cupfoundjo.org/. I wish I had found it whilst my husband was still alive. I am now fundraising for them. 

Praying for a good outcome for you both.

So sorry for your loss. My husband is 58, so not that old! We had an appointment today and they now think the primary is in his salivary gland. However the PET scan didnt show it as the primary but a biopsy suggests it maybe. So we still arent 100% sure. His dentist first found a lump there in 2017, but didnt think it was anything to worry about. Who knows but it does make you wonder. 

Thank you. Trevor was 60, so very similar. I do hope you have lots of support from family and friends - one thing a friend of mine did was set up a WhatsApp group of friends and neighbours so that we could ask for practical support. Things like someone to take Trevor to appointments if I couldn’t and someone to sit with him so I could do some shopping etc. It’s dreadful getting the news that someone has secondary cancer. Particularly in bones and liver. Hopefully now that you have a possible primary the doctors can plan some treatment. Keep updating this group on how you get on. Xx

Hello,

I know just how you feel. I completely lost my appetite and was back and forth to the Dr. Blood tests were worrying. I’ve had CT scan PET scan colonoscopy gastroscopy 2 MRI scans and a biopsy. I couldn’t understand why I needed all these tests but apparently they can’t find the primary cancer. I sat down with the consultant yesterday who said it was CUP and as I’m older had I been frail he wouldn’t have treated it. He has agreed to treat it so I’m not sure what comes next. To say I’m scared frightened and shocked is an understatement. He said he thought it was slow growing which is all I have to hang on to. I’m so worried this is going to spread all over my body and they don’t know the source of it. Like you I feel I’m in the middle of a nightmare that I can’t wake up from. I’m new here and would really welcome any advice. Thank you 

Hi

Last week we had an appointment at The Christie who said that because of the spinal compression Terry needed to have radiotherapy first and they did the first two sessions that day and the third 2 days later. It was quite intense and ten days later he still has a large area of his back and side that looks like he has sunburn.

Yesterday we went back and they have given him a plan for chemo which he will start in 2 weeks. 

Our family and friends are all being so supportive, just keeping everything crossed that things go well and quality of life improves because realistically that's the best outcome. X