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
11 Replies
Dear TannieT - just wanted to let you know you aren't quite alone - I am also TNBC post-menopausal - so there is at least one more out there - although we are in a minority inside another minority!
I have just (10 days ago) received my diagnosis of TNBC and mine is at Stage 3 Grade 3 (metastatic cells in lymph) with a very high Ki-67 proliferation index.
This TNBC was symptom free (no palpable lump) and was only picked up in a routine, regular mammogram.
The last 10 days have been a total shock and mental & emotional whirlwind as I've processed the diagnosis - and all the new information - that seems to land daily. Not to mention back to back scans each day and having marker clips inserted. Every referral had "Urgent" written on it with masses of highlighter around the word - that rattled me a bit too.
You might want to explore the option of a clinical trial if there is one close to you. I have been offered a place in the Neo-N clinical trial and I have decided to do it. The usual recommendation for TNBC is neo-adjuvant chemo, then surgery, then radiation. The trial will be immuno + chemo therapies, then surgery then more immuno.
The entire team here in our hospital Cancer Clinic has been absolutely amazing and I feel very fortunate to have access to them.
I do hope that you have a good team available for you too! Sending you my very best wishes.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 xxDo you have a breast care nurse to chat with as well?
Take care & wishing you all the best.
Hi again,
Does anyone know if they ever do only lumpectomy for TNBC. I am stage 2. and I do not appear to have any infiltration into lymph nodes. Would they ever consider just doing a lumpectomy and watching me??
Hi TannieT ,
Just reaching out as I saw your request for our choosing breast reconstruction group. (check your messages there is one there in regards to that). Also I have just shared a post in the general discussion about my survivorship. My first triple negative diagnosis was 16 years ago. I have tagged you in the post but will share a link here. It can be a tough road but there are many ladies on this site who have been diagnosed with triple neg.
Sending you a big hug.
Paula xx
HiTannieT i have been diagnosed with TNBC. I was sort of perimenopausal before diagnosis but now have chemically induced menopause thanks to chemo. I too felt alone after diagnosis, are you at the start of your journey? This place is great for community and support so you’re in the right place.
I’m here if you want to chat or vent or ask any questions 😊 Also check out @iamkellythomas on Instagram if you’re on socials. She was diagnosed with TNBC years ago and has created a community of TNBC thrivers with great podcasts and stories of survivorship as she too felt alone after her diagnosis. Following her story gave me lots of hope ♥️😊TannieT Thankyou for starting the conversation. You are right that TNBC is a little less common, however we have a strong community of people with this diagnosis who you can connect with. If you haven't already we encourage yo to join the TNBC private group!
While we wait for others to share their own lived experience, we thought you may like to watch our great webcast Triple Negative Early Breast Cancer
Please feel free to contact BCNA's Helpline 1800 500 258 if we can assist further.
Thank you. Appreciate this.
