Hi everybody. I have primary triple negative primary breast cancer grade three. The tumor was in my left armpit. Nothing has been found in my breast so far but I have just had an MRI and a PET scan and will be getting results at my next appointment on the 7th of March. Have had 6 months of chemo and immunotherapy which has been quite successful but there is still a little bit of the tumor remaining. I have been advised to have all my lymph nodes removed and either and a mastectomy or radiotherapy of the breast. I am trying to weigh up all the pros and cons so would be interested to hear what treatment other people decided on. However my main concern is that I may have surgery and that the cancer may return. So I would be very interested to hear if you have had a recurrence and how long after surgery this happened. As I am 68 years old I wouldn’t like to go through surgery and then find that a couple of years afterwards I have a secondary! It was originally thought that I was secondary as I had lung nodules but these didn’t change after chemo and immuno so they have decided they must be benign. However because of this I was started on the palliative dose of chemo and immuno and stayed on that because I seem to be responding well.
Hi BiRo,
So sorry to hear you’re now in this awful place.
I had TNBC in 2020, had 6 cycles of chemo first to shrink the tumour, then surgery all magins and nodes were clear,lastly 5 radiotherapy sessions.
All good until my 3yr mammogram last Aug when a new Primary BC was discovered.
Er+ and Pr+ in right breast ,first was left breast.
I am now cancer free again.
No one knows whats in store for us down the line. Just keep positive take advice from the professionals and do whats right for you.
All the best. Wishing you well.
Take care
Xx:hugs:
Thank you so much! So sorry you had a different cancer in the other breast after only three years 
. Did you get lymphedema and/ or nerve pain? I think that’s what is worrying me most.
Hiya BiRo,
Luckily I have not had lymphodema, I did the excersises they give you, and that helped, I had a small amount of swelling in the breast 2nd cancer, but my BCN said it would sort itself out which it did. Had cording with my 1st cancer thats a tight feeling in armpit but massaging the armpit every day soon got rid of that.
I do a bit of gentle pilates anyway so that helped. Basically daily gentle arm movements will help keep lymphodema at bay.
1st cancer my BCN advised twice daily massaging there is a youtube video after Breast surgery to stop lymphodema which I did however, 2nd cancer my surgeon said not to massage but to just let it sort itself out?
Try not to worry.I know that is difficult but staying positive really does help recovery and if you do need help your BCN, the BC Nurses here and everyone on these sitss is here to help and support you.
Xxx❤️
Thank you! That is encouraging! The thing is I am 68 years old and have all sorts of chronic health conditions. So I already have lymphedema in my legs and muscle pain from fibromyalgia. However I am quite fit for my age and determined to keep fit! I have asked my breast cancer nurse to sit in with me at my next appointment with the oncologist if she can, so that we can go over what he says afterwards. I am getting a new onc. because the one I had is leaving at the end of this month. I was interested to read that you had radiotherapy after your surgery for TNBC. I think that’s just an extra measure to try and prevent it coming back. So I will ask about that. I suppose your second breast cancer was not a recurrence of your tnbc. I’m guessing it was nothing to do with the tnbc and was just really bad luck. Glad you are doing ok now.
Hi @BiRo
I’ve just had a left side mastectomy for TNBC, radiotherapy has been advised simply because I had one lymph node involvement and because it’s TNBC. I would definitely ask if it’s an option and if not then why not etc, I’ve been very lucky that my team have allowed me to have every option available to me and I haven’t had to argue for much but sometimes you do need to be pushy. Hopefully your BCN will be able to help you through your appointment with your oncologist. Hope it goes well! X
Thanks. Glad your surgery went well and that you had radiotherapy as well. I have TMBC but only in my L armpit lymph nodes. Chemo and immuno has reduced the lump in the armpit so there is only a tiny amount left. Surgeon and oncologist wants me to have an axillary node clearance but surgeon advised radiotherapy to L breast and onc advised mastectomy. Because of difference of opinion surgeon ordered MRI of breasts and once ordered PET - CT scan! Had both of these last week. If these show cancer in L breast I can understand that I might need mastectomy - but I can’t understand why I would need this if there is nothing there! The other thing that concerns me is the possibility of a local recurrence which I suppose
would be in the L breast (maybe that’s why they want to do radiotherapy or mastectomy?!) or a secondary e.g. in lungs. Has this happened to any of you after surgery for TNBC?
Hi Biro,
Sorry to hear of your diagnosis. The whole experience is so anxiety provoking.
I have just completed treatment for my second diagnosis of TNBC (April2023). This was in left breast, grade 3, stage 2. I had lumpectomy, followed by chemotherapy then finally radiotherapy. The oncologist decided on this way round as the cancer at grade 3 is most aggressive. She also advised I have zoledronic acid infusions every 6mths for three years - to protect my bones from becoming very weak and to give some protection against cancer there too.
My first TNBC was diagnosed Dec 2017. Right breast grade 2, stage 3. I had chemotherapy, followed by lumpectomy then radiotherapy. But I chose not to have the zoledronic. The whole thing was a complete success and all tests for five years were clear. Until April 2023 - this time I took everything offered to me.
However, there are no guarantees for any one of us. I suggest you listen to the advice of the specialists as they will base their advice on your own individual health. Each of us is different, there are so many factors and variables involved.
There is the constant worry of it returning elsewhere. I’m trying very hard to live life as much as I can to the full and feel reassured that I will be monitored regularly by an excellent team of specialists. I have good days and bad days of real anxiety but I talk to my family and friends - the team at the hospital are just a phone call away.
Good luck and take all the help available. Xx
Hi Tess. Thanks so much for your reply. So sorry to hear that you got to cancer in the opposite breast and that it was another triple negative. Mine was in the left armpit. I never had anything in my breast. I had chemo and immunotherapy which is more or less got rid of the tumor. Both the oncologist and the surgeon are recommending removal of all the lymph nodes. However the surgeon recommends radiotherapy of the breast and the oncologist recommends mastectomy! This is to try and prevent recurrence in my left breast. I think I am going to go with the oncologist and have the mastectomy. Unfortunately my next appointment with him has been cancelled, probably due to the junior doctors strike. I had a PET scan which didn’t show any cancer in either breast or the other armpit. I am still waiting for the results of an MRI scan of the breasts. I am worried about getting lymphedema and /or nerve pain but I know I will be given help to deal with these if I do get them. I will try not to worry about getting a recurrence. I know I will be monitored regularly for this.