Why not join the Living with metastatic private group? Access group via the link here.

Metastatic Group

2

Comments

  • LITHGOW1950
    LITHGOW1950 Member Posts: 314
    @primek. Hope I have entered this correctly.  I was interested in you reply about lymph nodes.  I had 16 removed two weeks ago with 11 containing cancer.  In 2015 I had a lumpectomy and when they checked the sentinel nodes (took five) all was clear.  My diagnosis back in Aug 2015 was tnbc.  Thought I was going well till I found a small lump while  excercising and after a biopsy it showed to contain cancer! And I was doing so well.
    a CT scan a few weeks ago showed two small "marks" on my right lung ( same side as I had the lumpectomy) so oncologist has requested another CT this Fri to see if they have grown big enough to biopsy.  Also there is some confusion with my biopsy results.  I was HER2- the first time around but this time it showed HER2 positive which the oncologist is having rechecked as she believes it's not possible to change from negative to positive.
    so this week I have appointments every day.
    a question .... I with the lymph node removal I am so very sore and uncomfortable especially under the arm. I have started the excises.  Any idea if that is normal? The operation was just over two weeks ago.
    thank you 🌹
  • primek
    primek Member Posts: 5,392
    @LITHGOW1950 I think 2 weeks is a short time for full recovery of lymph node removal so I'd expect you to still be sore but if you are getting a lot of burning and its very red and /or weepy I'd be getting it checked in case of infection. 

    It might be unusual for the cancer to change but it has happened with others and this is why they they rebiopsy all recurrences. Although devastating that a recurrence has occurred (and lets hope  its is just contained to your nodes) if now her2 + it certainly gives you different treatment options. Are they rechecking thus biopsy or your original? I know of someone who was tnbc and ended up with a recurrence of Es+Her2+. 
    So you are now back on the waiting game for results and treatment plan. I expect your sleep is shot to pieces. Know we are thinking of you and will support you any way we can. Kath x
  • LITHGOW1950
    LITHGOW1950 Member Posts: 314
    Thank you so much for your reply.  It's the first time I have used.  @name!  Hope I did it correctly.
    i didn't realise how sore I would be after the nodes were taken out as the lumpectomy was I think fairly pain free.  I'm seeing my surgeon tomorrow although my GP thought all was looking ok. They are checking this biopsy.  But I do remember, three years ago when first diagnosis, they had the same problem and the biopsy had to be checked three times!
    i see oncologist next Tues 23 Oct so yes will find out results and plan.
    Lucky I'm a really good sleeper.   When I feel anxious it hits my tummy.
    once again thank you so much for taking the time to help me with your response..
    🌹🌹🌹
  • primek
    primek Member Posts: 5,392
    @LITHGOW1950 how did your appointment go?
  • LITHGOW1950
    LITHGOW1950 Member Posts: 314
    Thank you so much for your reply.  It's the first time I have
  • LITHGOW1950
    LITHGOW1950 Member Posts: 314
    @primek. I go back to the oncologist next Tues for all the results. I’ll Have a chest Ct scan this morning. A total week of tests!!!
    Thank you for asking. 🌹
  • kmakm
    kmakm Member Posts: 7,974
    Good luck @LITHGOW1950. Crossimg all my bits for you that the results are as good as possible. K xox
  • primek
    primek Member Posts: 5,392
    We are thinking of you @LITHGOW1950 in what we kniw is a difficult week. 
  • Sister
    Sister Member Posts: 4,960
    Fingers crossed for you @LITHGOW1950
  • arpie
    arpie Member Posts: 7,521
    All the best @LITHGOW1950

  • Bubbyc
    Bubbyc Member Posts: 3
    Hi trying to join the Metastatic group but with no success. Hoping someone can help out. I maybe a bit different to a lot of you on here in that my breast cancer actually went to my brachial plexus/axilla so hoping to make contact with someone in the same boat as me as well as others. First Breast cancer diagnosed 28th November 2008 this time 29th May 2018. 
  • lrb_03
    lrb_03 Member Posts: 1,267
    @Giovanna_BCNA, can you help @Bubbyc?
  • Giovanna_BCNA
    Giovanna_BCNA Member Posts: 1,839
    Hello @Bubbyc
    Sending you a private message
  • BoraBora
    BoraBora Member Posts: 49
    @Bubbyc hope you have been able to join group-only way I could rectify problem was to ring BCNA and issue was sorted straight away. If you don’t mind could you tell me how your Mets were diagnosed? I have Mets in my neck area but no actual diagnosis of location.
  • Bubbyc
    Bubbyc Member Posts: 3
    @BoraBoraong story but here goes. December 2016 I fell over got stitches, it got infected. My arm went numb from elbow to wrist put down to the fall. Made perfect sense. Roll on 12 months it got a lot worse now with tingling in my middle and ring finger, orthopaedic surgeon, neurologist couldn’t work it out. 5 months on the neurologist did a MRI on my brachial plexus thinking it was radiation induced neuritis from when I had radiation 9 years prior. Perfect sense again. Results came back with it saying leaning more to malignancy rather than radiation induced neuritis. So my roller coaster began again. PetCT scan showed the tumour entwined so it couldn’t be removed. Fine needle and Core biopsies weren’t successful because of the location. Surgery to remove a part for a biopsy came back that it was definitely ER+ again. Had 6 weeks radiation. Now on letozole and the new drug Kisqali which is not agreeing with my white cell count. Oncologist today to see if I can go to 1 tablet a day. And that is my story nearly 2 years on from my fall. At least I know the radiation has shrunk it as I am not in as much pain now. PetCT scan in a month or 2 to see what’s going on. I also had some dodgy lymph nodes.