Occult primary anyone?

Hi ladies. I am posting in the hope that someone may have had a similar diagnosis to mine. I was diagnosed after finding an enlarged lymph node in my armpit in Dec 2014. I had the node removed and the results came back as ‘poorly differentiated adenocarcinoma’. Due to the location, a primary breast cancer was suspected. However, after biopsies, Mammogram, ultrasound, MRI, CT, MRI guided biopsy and an endoscopy, nothing was identified in the breast. I had 6 x FEC-T, followed by 15 rads and then axillary node clearance.  The lymph node that was initially removed was ER and PR negative, HER2 positive, so I also had 18 lots of Herceptin. My treatment finished in April. I had another mammogram in May and again, nothing was identified. Because my primary was never found, I worry that there is still something lurking. Most of the time I put these worries to the back of my mind, but it’s difficult when I can never be 100% certain that everything is gone. I have searched the forum, but there are no posts that are similar to my situation. It would be great to hear from anyone who might have had a similar experience xx

So sorry to hear of your experience - no I’ve not heard of yours but your not alone in not finding the primary site in fact for many we go on assuming the ‘lump’ is the primary site without ever giving a thought that it may not be until secondaries set in . The doubt is always there but it does diminish as we get on with our lives and other ‘stuff’ gets in the way.


I really hope you get a response from those who may be able to offer you more relevant advise - dont dispair if the girls on this site havnt responded recovery and Christmas may be getting in the way of them picking up your thread  if necessary post again .


I’d like to urge you to contact the Nurses on this site - they were amazing when I had a problem and unaswered questions I only wished I’d contacted them earlier - I’d got myself into a right state by the time I phoned . They have absolute empathy for our situations in all its varying degrees, please dont go through tis energy sapping  anxiety on your own it will hinder your physical and mental recovery - give them a ring . Hope it all improves and you have a happy and peaceful Christmas.