I am new here. My husband is diagnosed with CUP.

Hi. I'm kind of new myself with CUP diagnosis you can read my profile. Which needs to be updated as since Thursday I was told my cancer is incurable, treatment will control it.

I just want clarify I'm reading your post right. Is the cancer incurable? If so then I would suggest joining the "incurable cancer group" for family as well as this group. I only saw those groups the other day.

I was told the same with my primary. After several tests can't be found so either it's tiny, hiding or gone. 

It's just awful for your husband & yourself. All these groups are very supportive & we are all here for each other. Xx

hi. we are told the cancer is not curable. they are to try and control it with palliative radiotherapy.. i have only just begun my journey in this, so my research so far is at a very early stage. also he has only had 2 radiotherapy sessions so i have no clear idea of how this will pan out today. i am waiting to see what happens and how he responds. i am hoping he can live with the cancer.......but i just do not know yet. will update as time goes on and i learn more about the cancer and the treatments.

I really hope everything goes ok. Keep us updated. Xx

Hi sally 

I myself have been on immune suppressant treatment for chrones disease since 2013 , I have had pain in my shoulder area for nearly two years I had been attending the orthopaedics  in this time but he could not find anything apart from wear and tear he said , anyway there was a visible swelling one day and went to my GP who sent me for an ultra sound scan which then led onto a biopsy where cancer was diagnosed in my clevical area I have just finished four weeks of radiotherapy as it cannot be removed because of where it is the mass is amongs nerves etc the radiotherapy which was every day of those four weeks , my oncologist told me that it is a secondary but they cannot find the primary ! Iam now worried out of my mind wondering where it is , Iam sure my immune suppressant treatment has caused this , maybe not but I have a feeling it has

regards Margaret  

Sorry o meant to mention I have had all the scans there are including the PET scan and they cannot find anything else in my body 

Yes. The same pretty much happened to my husband. My humble opinion is that the immune suppressant drugs caused this too. Surgery is not possible here either as his tumours are too near his lung and heart etc etc. Anyway.......so radiotherapy is where we are at as I write. I have no great words of wisdom or advice to offer at this point as we do not yet know how the radiotherapy is going to work out. In our case I do know it is not the last option, though we are still just getting to the end of the radiotherapy  and that is as far as we are thinking at this time. At the end of 10 treatments they will wait 3 months before a scan to find out if the tumors have shrunk (or even been contained?) This is the aim at the moment. Too shrink the damn things. If more than that happens even better!!!! but at this time this is as far as we can get with this.

By the way....I do not think they will ever find my husband's primary either. again...I think the immune suppressant drugs have possibly messed with his system so much his body has reabsorbed the  primary cancer. Like I said it is only my humble opinion.  So we/I are not going to worry about what is not there and concentrate on what we do know. . 

I was diagnosed with rheumatoid arthritis in my early 30’s and diagnosed with squamous cell carcinoma of unknown primary 21 months ago. I’m now 40 years old. I have also been on methotrexate and biological treatment which was stopped when I got my cancer diagnosis and started chemo. I’ve been told my cancer is incurable. I’m now off chemo and back on methotrexate to help with arthritic pain. It’s so hard dealing with cancer full stop but other health conditions on top make it so hard to navigate symptoms.