Good afternoon Iam posting here to introduce myself and to explaine what’s been going on with me I hope it’s not to long winded for the readers.

I am also hoping that I can get some advice from anyone who has had this type of cancer as it seems very rare & I cannot find much about it on the internet 
Iam in the UK 61 year old female just retired from social care when this all happened. 

I had been attending orthopaedics for two years with excruciating shoulder pain but kept being told it was wear & tear ( bone on bone ) comes with age etc. they done X-rays sent me to physio 

The pain became unbearable I was calling the orthopaedic secritary regularly begging for an appointment explaining how much pain I was in , I was never out of the GP surgery , I was crying all the time with the pain,

I was swallowing pain killers like sweets and nothing was helping , I spent so much money on neck pillows , freezer packs, pain meds, sprays, gells etc but this orthopaedic still said it’s wear and tear and there isn’t much they could do & he discharged me ! 

I noticed one day a swelling at my left shoulder but nearest to my neck,  swelling was very noticeable so off I pop again to GP , she referred me for an ultrasound scan ( I think she knew at this point what it was ) ultrasound was done and they then sent me to ENT where I got a biopsy and the cancer was discovered ,secondary Adenocarcinoma of left supraclavicular fossa with bone destruction, with no obvious primary but suspected from lung. 

I was sent for PET scan and no other cancer was found , I began 20 fractions of radiotherapy, I couldn’t get chemo because in the middle of all of the above I had emergency surgery for a bowel perforation & had a stoma and wounds healing but that’s another story !

I finished my radiotherapy in August 2023 and the pain has definitely subsided and suspect the mass has shrank back  thank goodness for that ! But I don’t know yet how much of an impact it’s had on the cancer as I have had one scan since the radiotherapy and oncologist says it’s hard to distinguish whether it’s the cancer or scar tissue from the radiotherapy that she can see, she has examined all around my neck and says it looks like the radiotherapy has done what she wanted it to do and I will get a scan this May .

I worry where the primary is as nothing can be found, oncologists says it could have just dispersed on its own but most definitely the lung would be where it started, I know that ppl on these forums will know the absolute nightmare it has been, I have been through every emotion and had to get antidepressant’s as I was sinking so low , now I just wait for that next scan, I feel in limbo , I worry constantly it’s like my life has stopped and I cannot believe that this shoulder pain turned out to be cancer! Anybody with any similar cancers to chat with would be great & wish everyone going through this horrible disease hope and love 

thank you for reading x