Apologoes in advance for the essay!
Rust I was grade 3, stage 2. I was only stage 2 because I had 3 tumours, otherwise I would have been stage 1, as the size was so small (the biggest tumour was 1cm, the others about 3mm each). No node involvement.
I had chemo first (4 x EC and 12 x Tax with some carboplatin thrown in for good measure) and then a double MX and immediate implant recon (I wanted a TUG flap operation but my legs were too skinny, apparently). TBH I am happy I had the implants now - it's allowed me to get straight back into life, work, children etc., and they look amazing compared to the pre-op boobs (3 babies breast feeding in 3 years did not leave me nice ones!)
The positives are for us TN ladies are that because we can't have any hormonal treatment, we don't have the side effects which comes with taking Tamoxifen or similar for 10 years. Obviously I would prefer to have that option, to prevent it coming back, rather than not, but if you can't have it, at least think about not having a daily reminder about having had cancer, and all the side effects which comes from the drugs you have to take (some only have mild side effects but others suffer a bit more I think. Another positive is that TN usually reacts really well to chemo - it really soaks it up - so you can get away with less surgery in the end, if you want to try to conserve your breasts. I didn't want to, mainly for symmetry reasons (I would look really lop sided if I'd had even a lumpectomy, as my pre-surgery breasts were so small/saggy).
Also there is something called the TNBC paradox, where if you get a complete pathological response (after chemo), you actually have a better prognosis than other BC ladies with hormone receptors I have a proper scientific report written by a friend who did her PhD in TNBC which goes into more detail, but in a nutshell, TNBC can actually be less harmful than other BCs, depending on the type of TNBC you have, if you have the most 'aggressive' treatment). The thing is TNBC isn't actually a type in itself, it's describing what it's NOT (i.e. it's not got receptors for certain hormones) and it's actually a really heterogeneous disease with lots of different sub-sets and features (mine was "medullary") and thus it's really hard to say what each of our individual prognoses will be, as there is more that is different about us, than is the same (unlike other BCs). But if you can find out what your pathology is from your tumour, you can get an idea of what your prognosis might be and it could be better than other types of BC.
Because TNBC is classed as one of the more aggressive types to have, you generally have the most aggressive treatment paths, and thus they throw everything including the kitchen sink at you in terms of chemo (and possibly surgery) which again improves your chances of keeping it gone forever. I had 16 rounds of chemo including tax and carbo which TN reacts really well to.
I was surprised it had stayed away because I had read too many blogs which had women like me who had had TNBC and then died from a recurrence less than a year after getting their NED. It was very sad and I was very scared. But they weren't me, I didn't have their specific type of TNBC, and I was having a different treatment path, so I really shouldn't have been so surprised that we had different outcomes at our 6 months scans, but sometimes I am pessimist!
And because TNBC is one of the more aggressive and less well understood BCs (because it is so heterogenous) it has a lot of money being poured into research for it, so there is a lot of work being done to find answers for our particular nemesis, which is good too.
Do you have the gene do you know?
I have some personal bits of advice, which are probably more cancer related than TN related, and obviously everyone is different so what worked for me could be different for you, but I can REALLY recommend exercising as much as possible. I did HIIT all the way through chemo, and it kept my body and mind really strong for the treatment. I read a lot of research about doing high-intensity training as a way to combat fatigue and nausea and it really helped, I believe.
Cold capping was awful for me. Honestly, some women seemed to breeze through it, but because I had 12 weekly doses of chemo after the initial 4 (spaced out every 3 weeks seemed a lot more do-able) I had to endue the freeze brain every week for 3 months and it nearly sent me over the edge. BUT. I am soooo glad I did it. My kids never knew I was ill (we didn't really tell them - only that I had a poorly boob which needed medicine through my "plug" (very obvious portacath in my chest) and that I had to travel to the UK for this medicine); I was able to hide the bald patches with this miracle product called Toppik (see before and after photos) and at the end of treatment, although my hair was a state, I at least had a running start to get a decent pixie crop (see final pic, about 3 months after treatment had finished)... so I am glad I persevered even though I hated it!
I hope that's all helpful. I don't know what stage you are at in your journey (sounds like you are about to start chemo?) and so am not sure what advice is most helpful for you, but am happy to answer any and all questions. This really is the worst part - waiting for treatment to start, but once it does you get into a rhythm. I joined the Young Breast Cancer Network (for women under 45) on FB and it was a goldmine for advice on how to deal with the side effects of chemo, hair loss, make up etc. Oh that's my other advice - I don't know if you wear lots of make up, but I never wore anything, and so went to Bobbi Brown and had a 45 min make up tutorial, bought EVERYTHING he recommended (about 500 quid!) and then at least made myself look pretty on the days I felt like shit. And now I still know how to do make up! So what with that and my new pixie crop, and double D boobs, DH now says I have had a cancer make over and look great on it! Silver linings and all...
Let me know if you want that paper on TNBC - it's obviously scientific but you can get a lot out of it, if you like knowing the science behind everything...
Excuse typos!