Metastatic Adenocarinoma

Hi Jojo and welcome to our community. I personally don’t have experience if this but I have a friend who is in a remarkably similar position with different markers showing up in her biopsies too. I’ll tag her and see if she can drop in to chat with you 

Zarasmum

Tanya? 

Welcome to this group. I don’t have the same experience as my primary was found. You have come to the right place, you will get support and replies from others who can hopefully give you the benefit of their experience/s

I can't help with the actual situation you find yourself in, but I have experience of them not finding the primary.  Often these cancers are very small and sometimes they never show on the scans.  I think CT looks to around a 5mm object and a modern MRI down to 1mm.  Interestingly I've just had a discussion with my consultant and he says PET scans also work on bulk of tumour so small tumours are often lost in the background take-up of the radioactive tracer used.  You learn something new at every appointment!

Although not totally at a tangent I've had various bits removed looking for the cancer.  I've had all the lymph nodes removed from my right neck - they never found any sign of the cancer.  They did not take any muscle.  That was a relatively easy operation to recover from.  It was finally found by visual inspection after 18 months.  They have also removed my tonsils and had a go at my tongue.  My only sign was an initial lymph node and, finally, a slight swelling in my tongue that unless I'd had the history I do have would have been ignored until it got more prominent.

Sometimes our bodies are just "difficult"; mine has lead them a merry dance!  It is not that ENT (or any other team) are not competent.  It may just be that the symptoms and clues in histopathology are confusing.  Sometimes it is a lucky break that finally resolves the real issue.

A few of us fall off the well trodden treatment path for these cancers; you may be joining that club.  Keep with it and ask questions, we're here to support you.

Hi Jojo

Thanks, Beesuit

Yes,  I have the same issue as yourself with regards to the tumour markers and different teams competing to not be the one!.   In October last year, I had surgery to remove lymph nodes in my neck, surgery was due to swelling causing issues with jugular veins and blood clots.  The pathology found that I had Squamous cell carcinoma in that node. Tumour markers post-op showed--- Small lung cancer, cervical cancer and bowel cancer, however, my PET scan showed no evidence of cancer in any of those or any other organs.  It did show several enlarged lymph nodes throughout my body in particular, neck, chest and abdomen.   I was referred to all three specialities, including head and neck.  Each department ruled out cancer in its speciality.  I had six rounds of chemotherapy, last one March this year, both my 3 month and 6-month scan reviews have shown no evidence of cancer anywhere and lymph nodes returned to normal, I did have some dodgy blood results but my oncologist says scans tell the truth, the blood results guide.   When I saw my oncologist in September I asked him about being referred to the different teams but as he said, if they can't see anything, they can't really treat it as such.  I have three monthly CT scans and bi-annual PET scans, the next one being in January.  ENT discharged me, despite finding cancer in my neck and being my first port of call,  as my markers are not associated with H&N cancers.   Cancer Unknown Primary is really hard to get your head around. Other people find it strange that you do not know where or what your cancer is, but I have discovered it is more common than you might think. I have also learnt to not Dr Google.   You may find that once the whole lymph node is removed you may get a clearer answer as they will be able to do more investigations on the tissue removed.  Please feel free to ask any questions or message me if you need to.