Triple Negative - persistent cancer cells after mastectomy.

Rainbowkitten Member Posts: 4
edited May 2019 in General discussion
Hello 👋
I am currently in hospital after having a double mastectomy, axillary clearance & reconstruction. The operation was quite a bit more intense than I imagined, so it’s thrown me around a bit. I’m coming good though after 7 days in hospital. 

The disappointing part is the pathology results.. Obviously I was hoping for a complete pathalogical response, but unfortunately there are persistent cancer cells. All of the lymph nodes which were removed had cancer cells present & the actual breast cancer itself had doubled in size & is a bit of a creeper rather than a contained tumour. I am disappointed to say the least.

My surgeon has suggested we move radiotherapy forward by a few weeks & then look into immunotherapy. 

My question to you guys is, has anyone else been in this position? What did you do moving forward? Any helpful tips? Diet ideas? 

Im feeling a bit naked in the rain..


  • lrb_03
    lrb_03 Member Posts: 1,267
    edited May 2019
    Hi, @Rainbowkitten. I'm taking it from your reaction to the results that you had neoadjuvant chemo? I'm really sorry to hear your results, but I do have some idea of how you feel. Although not tripple negative,  my only response to neoadjuvant chemo was a reduction in the proliferation of the the tumour. I remember how gutted I felt. On the flip side for me, with a hormone receptor positive tumour,  I've now been on hormone suprression forover 3 years. 
    I think you take the advice of your surgeon, have a good talk to your medical oncologist about immunotherapy, and maybe see if there are any clinical trials around. 
    Diet wise, a healthy, balanced diet, and exercise.
    I wish i had more to offer, advice wise
    The other thing I would strongly recommend, is finding a good counsellor/ psychologist to talk to, preferably someone with a knowledge of cancer. If you have a Breast care nurse, ask for recommendations.
    Happy to talk any time
    Take care
  • Rainbowkitten
    Rainbowkitten Member Posts: 4
    Thanks @lrb_03
    yes, I just finished by 5 months of neoadjuvant chemo. I had a scan at about 2 months in & the breast cancer had shrunk to half the size, and the lymph nodes were shrinking. So these recent results were quite a shock.

    Thanks so much for sharing your similar journey. It makes me feel less alone in this. How are you feeling 3 years down the track? And thanks for the other advice. This helps as its hard not to spin out so much that you can’t think straight! 

  • SoldierCrab
    SoldierCrab Member Posts: 3,445
    hi Rainbowkitten do you have facebook? 
    there is a great TNBC group on there which I am part of the ladies are all lovely and we are a closed group. 
  • Rainbowkitten
    Rainbowkitten Member Posts: 4
    Thanks @SoldierCrab - I joined that & it’s very helpful! 👍

    Thanks for sharing your journey @Shellshocked2018_ it is such a mission!! Not dissimilar, what we have gone through, just a different order. Exact same chemo - heavy duty! You are nearly there tho! 🙌 
    Great advice. Thanks so much! I am feeling a bit more positive today, so onward & upward! Gotta keep fighting!! 💪💪💪 xo
  • Shellshocked2018_
    Shellshocked2018_ Member Posts: 283
    Rainbowkitten  WE CAN DO THIS !

    Sending cyber hugs your way xx