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

Recurrence in lymph nodes

Hi everyone,
I was diagnosed with TN Inflammatory BC in late Oct 2017. Treatment was 5 mths of Chemo ( 8wks fortnightly A/C, followed by 12 weeks weekly Taxol) then modified radical mastectomy (rt breast and 3 lymph nodes) which showed only a tiny amount (1.3mm) of residual disease with excellent margins. There had been evidence of activity in the lymphnodes. Surgery was followed by 5 weeks radiation and then I had what I refer to as my bonus chemo - 4 months of Capecitabine (Xeloda). That all took me to Christmas 2018.
Since then I have been feeling better each day and looking fabulous (according to my dear friends and family!). On an o/s trip in early June I noticed the onset of lymphoedema in the right arm - sad but not completely unexpected after the radiation. As soon as I got home I booked in to see my surgeon, who is wonderful and always says to see him asap if anything changes. He sent me for an ultrasound, having said he didn't expect anything sinister. Unfortunately the ultrasound shows at least three lymphnodes appear enlarged and diseased - I go back on Wednesday for a Fine Needle Biopsy, but the radiologist made it pretty clear she thinks it's not going to be good news. I have to wait until next Monday 22nd for the results and to know what I'm looking at in the way of further diagnostics/prognosis/a treatment plan etc. I know there's not much advice anyone can give at this stage, but am just having a little freak out and trying very hard to stay calm for my darling husband, so I thought you would all understand if I had a little figurative scream in this forum!! 
I am searching my self for the inner strength to do this all again - in some ways easier when you know what it entails, and in some ways so much harder for the same reason.
Worried and sad, but trying to be strong.


  • Afraser
    Afraser Member Posts: 4,327
    Best wishes for the results, this is not something anyone wants to go through. I had several very enlarged nodes and the biopsied one was positive. 17 were removed, which seemed fair enough in the circumstances but the only one affected was the biopsied one. The rest were reacting (ie irritated) but OK. Hope there is a simple and gentle answer for you. 
  • sallylovestosing
    sallylovestosing Member Posts: 31
    Thanks @Afraser, I hope so too!
  • BlackWidow
    BlackWidow Member Posts: 268
    Sending big hugs to help you get through this week of waiting   <3
  • sallylovestosing
    sallylovestosing Member Posts: 31
    Thanks @BlackWidow - the waiting really is a torture all of its own! SO nice to have a place where I know people really understand what I'm feeling.  :) 

  • Zoffiel
    Zoffiel Member Posts: 3,372
    Hi Sally, 
    I had a recurrence in the my armpit 10 years after my first diagnosis. A large tumour that had previously been dismissed as scar tissue and another 5 affected nodes. It's very disappointing and challenging to contemplate going through the whole thing again. Despite some rather discouraging comments from a surgeon (not mine) who predicted 'That will be just the tip of the iceberg' I'm still here nearly three years later and not showing any signs of progression. For now.
    Hang in there, this is not that uncommon--yet another reason we don't want this shitty disease.
  • sallylovestosing
    sallylovestosing Member Posts: 31
    @Zoffiel thanks for your support - I love to hear positive words like yours  :)
  • poodlejules
    poodlejules Member Posts: 393
    Good luck Sally, one day at a time. Sending you all the best! Julie xo
  • Sister
    Sister Member Posts: 4,960
    Shitty thing to happen - thinking of you, @sallylovestosing
  • primek
    primek Member Posts: 5,392
    @mum2jj had a recurrence inside 2 years and now 8 years free tnbc (I think) We all get how devasted and how gutted you feel given treatment not finishing long ago. Please keep us up to date on what's happening next. Hopefully it's still considered locally advanced and chemo again may be the option. 
  • sallylovestosing
    sallylovestosing Member Posts: 31
    Thanks for thinking of me @primek. Great to know it’s not an impossible dream!! 
  • sallylovestosing
    sallylovestosing Member Posts: 31
    Oh Paula thanks for messaging - I so needed to hear your good news story! Keeping everything crossed that I can be as brave as you and be encouraging someone else in eight years time 🤗
  • mum2jj
    mum2jj Member Posts: 4,322
    edited July 2019
    You’re you  welcome and I have everything crossed for you to. 
  • TonyaM
    TonyaM Member Posts: 2,832
    Hi Sally, we always jump to worst scenario which is a normal reaction. I had a recurrence in the same breast 7yrs after first cancer diagnosis so had to jump through all the hoops again.I was so worried it would be in the bones but it was all clear. That was 9 yrs ago and I’m fine- no more cancer scares.I have a lady in my bc support group who had a recurrence in her lymph nodes and that was 17 yrs ago. She’s been on various meds and her oncologist keeps her monitored.The cancer stays put and hasn’t travelled for 17yrs! Sometimes nodes enlarge when you are fighting a virus.I hope you are cancer free but if not,take heart from all our positive stories.xx
  • sallylovestosing
    sallylovestosing Member Posts: 31
    Thanks Tonya and everybody who has commented on this thread - I really am taking heart from your presence ! Every cheery comment and positive story has helped restore my equilibrium!! You’re all gorgeous to take the time and energy xxxxx