Hi I had double mastectomy on 28th Oct after finding a lump in my left breast and have gone flat, best decision I made as I'm so happy with the scars :) I opted to also have right one off as I have BRCA2 gene and my mum and sister have both had the same cancer Triple Negative grade 3, both in left breasts. When it was tested it was 1.3cm clear margins and 3 nodes taken were all clear :) I'm seeing my oncologist on 2nd dec and they want me to have 3 x FEC and 3 x FEC-T every 3 weeks for 18 weeks from january. I'm really steering towards declining the Chemo due to many factors, first one was my mum and sister both had chemo which didn't work, my sister in 2015 before surgery and it just grew to 5cm, they stopped chemo have 3 x FEC and she had a mastectomy, then some radio, but no more Chemo. My mum 18 years ago had left breast off then FEC plus FEC-T, which didn't work as 12 months later it had spread to her lung. I have then researched as much as I can and I'm finding out that specifically with TNBC it seems to becoming resistance to Chemo in some reports, TNBC can come back more aggressive and faster after Chemo as the immune system is lacking, the Chemo kills most cancer cells but not the stem cells, which survive and can seed new tumours that resist chemo. On Predict risk calculator it states I have a 86% chance of survival with surgery only and if I have 3rd gen chemo it goes up to 89%, so that's only 3% extra for a chance it won't even work and I'll feel completely ill while going through Chemo. Then there's a risk if it did come back that the Chemo I've already had won't work 2nd time around as it may have become resistant :( Has anyone researched more into off-label drugs such as Metformin, Loratadine or Propranolol etc?
I suppose I wanted anyone else's journey, where you may have refused Chemo or looked in to any further research before deciding on whether to have Chemo or not. On Predict, as I'm post-menopausal (due to having my ovaries out in 2017 at 44), it states I could take Bisphosonates and they would give me an extra 2% on their own (88%) so wondered if anyone had taken those? I am already in Osteopenia so they may help my bones too. Any feedback would be greatly appreciated thanks Zoe x
Morning Zoe /
Warm welcome to the Mac Community, not that like seeing so many new members :-/
You have certainly been through the mill getting lumbered with BRCA2 and TNBC.
Deciding whether to go ahead with what is a long period of chemo is a tough call especially where TN is concerned as there are no follow up meds only surgery and rads. Most given this will bite the bullet and accept this is needed to further reduce recurrence risks.
Using Predict (or similar) chucks a % at you but these are only averages and everyone is different so they really don't count for much individually.
Truth is no one knows if they will fall foul of recurrence or secondaries post treatment, you just sort of hope you never have to cross that bridge but we all know it can and does happen. You can get one person who has minimal treatment, recovers and lives a near normal life until old age, whereas another can have everything going chucked at their cancer, only for it to return within a couple of years 
There is no reasoning or logic behind it ?
You have researched the options well but at the end of the day this is your decision to make with no regrets either way. TN has a higher recurrence rate as you know from past experience with your mum and sister and that must be swaying your options to decline. There are a few members who have not accepted chemo but I'm unsure if these were diagnosed TN and/or brca.
Maybe you would get a lot more replies if you joined and posted this in the Main Breast Group (link) as this group isn't very active - Nearly all TN ladies have joined both so your question would reach them. Maybe by even replying here this will 'bump' your post and gather some more opinions but covering both groups would be of more benefit to you.
Fingers crossed whatever choice you eventually make works out being the right one for you.
Hugs, G n' J
Hi Zoe, hope you’re well. I’ve just been diagnosed with TNBC, 26mm and try to figure out what to do in order to beat it!
Reading your post gives me a bit of clarity about this type of cancer.
Next week I’ll meet the oncologist and will decide the plan. In the meantime I do some research to be prepared and to know what to ask the doctor.
How are you feeling?
Lots of love and hugs 
Hi,
I was diagnosed with TNBC late Feb 27mm tumour like you my treatment plan was 6 cycles of chemo FEC-T followed by surgery then radio theraphy.
The chemo first was to shrink the tumour to preserve the breast however this may change from a lumpectomy to a mastectomy dependant on my genetic test results.
I have had 2 rounds of chemo so far first 26 March second yesterday. My lump has definatley shrunk quite a lot. I have lost my hair and there are side effects which with you can get help with. My oncology centre closed for outpatients but relocated to a floor in a dental hospital.
No one can tell you what to do especially in these unusual times but knowing my lump is shrinking with the chemo has helped me.
Best of luck, stay safe 
