TNBC
Hi, Just wanting to connect with perhaps post menopausal women who have been diagnosed with Triple Negative BC? Feeling quite alone and it seems TNBC is quite different from the hormonal BCs.
Forum Discussion
Hi Munky, Yes it's all a shock!! AND that whirlwind of endless tests and scans....is overwhelming.
As I type, I am in hospital having just had L) Mastectomy on Thursday. It went well and I am okay. Done. Now have to accept and move on. Actually a relief.
My story is very complicated. I have been to hell and back. Chemo & Immunotherapy nearly killed me. I DID have first 4 rounds, May to July. But I went into Heart Failure & 3rd Degree heart block. And I had PEs.
I got to hospital just in time. I was swelled up like a balloon & had 11 extra litres of fluid in my body and my heart was beating 38 to 42 bpm!!!
I did not go back into sinus rhythm, so had to have a cardiac defibrillator-pacemaker put in.
So I cannot have any more Chemo. And because my defib is in left side? No Radium can be done over it. So even though it appeared I was Stage 2 and it seemed to not have spread...mastectomy was my only option. I got 2 different surgical opinions + my Oncologists. With TNBC...no one would not do mastectomy in my situation. Even though PET & MRI (post the Chemo) showed no cancer, clips there, but nothing around them.
But was told, if I do nothing, 35% chance of coming back in 5 years. Breast off? 1% chance.
No opportunity for Clinical Trials for me.
Anyway feeling relieved everything is over for now. I have to get my heart better and my immune system back on track. I'm on a multitude of drugs....hope they work🙏🙏🙏
SO sorry to read of the hard time you've been thru TannieT xx That's a really tough call :(
Have you joined the TNBC private group? There you can chat with others with the same diagnosis & possible side effects. We have some wonderful ladies in the TNBC group who will be supportive of you xx
I hope you can rest up now following your surgery & recover well xx. Make sure you don't do any 'lifting' (we do stuff without thinking ... picking up the kids, or hanging out the washing .... just DON'T DO IT - for a while anyway! Your surgeon will let you know when you can xx)
Sometimes chemo can cause heart issues too ... so ask your Onc about that xx
Do you have a breast care nurse to chat with as well?
Take care & wishing you all the best.
Yes, I am in that group. I find it really hard to navigate this site. I can't seem to work out how to find different groups. If there is no reply, I can't work out how to find groups. Never mind