Forum Discussion

LITHGOW1950's avatar
LITHGOW1950
Member
7 years ago

HER2- or HER2+.

Back back in 2015 when I was diagnosed with TNBC I was diagnosed as HER2- (no lymph nodes involvement)  This year 2018 back in September I had 16 lymph nodes removed and 11 were cancer again a TN. 
However the biopsy showed the nodes they removed were HER2+. 
I also had a biopsy in September to a small node on my lung which was also TN and HER2-    I can recall another lady from our group saying in my previous discussion a similar thing happen to her. Wish I could remember who it was.

so following my visit to the oncologist yesterday she is having the lymph nodes re tested. I have started treatment again but obviously if the nodes are really negative it wil change my treatment.

im feeling so frustrated as this testing has been going on since Mid September. 

Just wondering if anyone has had a similar thing happen to them.
thank you.  ðŸŒ¹
her2

6 Replies

  • LITHGOW1950's avatar
    LITHGOW1950
    Member
    7 years ago
    @StarGirl. Just found your comment.  Sorry I for some reason had trouble locating it.
    Thank you for your reply. My oncologist gave no reason other then it can happen.  She took my case to the team meeting but nothing was resolved.  Anyways I'm on perfecta and herceptin for 12 months.  Just finished three months of taxol.  
    Take can and thanks again for your reply.  ðŸŒ¹ 
  • StarGirl's avatar
    StarGirl
    Member
    7 years ago
    @LITHGOW1950 not sure if this is what you meant but I also have two different cancers. My original cancer was HER2+ and ER- and PR- (no hormone receptors at all) when I had a recurrence a few years later the new primary and lymph nodes were HER2- but we’re ER+ and PR+. They said I might have had two cancers all along and it just happens that only one type was biopsied. Or, it might have been that the background DCIS left behind after chemo subsequently produced a new cancer. Not sure if that’s helpful at all? Wishing you all the best
  • LITHGOW1950's avatar
    LITHGOW1950
    Member
    7 years ago
    Thank you ladies for your replies.  I'll keep you posted on the results next week. 🌹🌹🌹
  • Afraser's avatar
    Afraser
    Member
    7 years ago
    Not sure if this is the same issue but my primary tumour was HER2 negative. My one affected lymph node was HER2 positive. My treatment following mastectomy and axillary clearance was chemo, herceptin and hormonal therapy. It appears that HER2 status can change, which is why retesting may be called for. Cancer is a slippery customer, but I sympathise, your situation must be very frustrating. Best wishes. 
  • primek's avatar
    primek
    Member
    7 years ago
    I've had a read through search bar but unable to find the discussion you referred to.  Maybe they privately messaged you or it's in your private group.
    How frustrating and confusing this unclear diagnosis must be for you and your team. X
  • poodlejules's avatar
    poodlejules
    Member
    7 years ago
    Hi @LITHGOW1950 so sorry to hear this . I was HER2 + with lumpectomy and sentinel node removal but yours sounds way different to that. Someone might know the other lady you are talking about and jump on.I'm only checking in every couple of days myself as its a busy time of year. So hang in there, sending you big virtual hugs!