In a state of shock.

Hi Italian Job and a very warm welcome to the Macmillan Community but sorry to hear about your CUP diagnoses and the ongoing challenges you are having g to deal with.

Navigating the cancer journey can be such a stressful and challenging time but getting support from people who have walked the ‘exact same' cancer type journey can help a lot.

As you see the Community is divided into dedicated Cancer Specific Support Groups (Discussion Rooms) and I do see that you have already joined our dedicated Unknown primary cancer and Head and neck cancer support groups. These groups are safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.

To connect in with the group click on these links> Unknown primary cancer and Head and neck cancer then once the group pages open you can introduce yourself by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post.

The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

We also have our Ask an Expert section but do allow a few working days for a reply.

Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and give support to all the family.

Do get back to me if you need further help navigating the community but in the meantime all the very best.

Thank you for replying, I do appreciate it, things have moved along for me as I now have the results of my Pet scan, I’m going for a biopsy under general in a couple of days time to identify the primary cancer but unfortunately it has already spread which has changed things from potentially curable to treatable. An awful lot to come to terms with currently. 

Hi again Italian Job and sorry to hear about the recent developments, it’s a lot to get your head round.

I unfortunately also know this journey rather well as I was diagnosed way back in 1999 with a very rare, incurable but treatable type of cancer…… but I am still here as the amazing NHS keep finding the next tool in their box to keep things under control.

You may find it helpful to join our Living with incurable cancer - incurable patients only support group (Please join the group but for everyone's safety this will then have to be approved by the Macmillan Community Team so will not happen immediately) 

This is a safe place to talk with many others who are navigating the same rollercoaster.

Always around to chat but if we don't chat again, all the very best.

Sorry to read this.  I hope things move quickly on the diagnosis and they can find the primary.  There's the Living with incurable cancer forum - patients only  group too.  We're a friendly bunch on the treatable pathway if you need support around this area too.

Thank you Mike, only my wife, brother and sister currently know the full extent of the news I received recently, I’m doing my best to process and try to move forward… early days I guess. I’ll ask to join the group you have suggested. Thank you.