Hi Gymnut and welcome to the BCC forums
In addition to the shared experiences and support here, please feel free to call our helpliners for practical and emotional support, lines are open weekdays 9-5 and Saturday 10-2 on 0808 800 6000
You may also find some of BCC’s other support services helpful and you can read about these here:
breastcancercare.org.uk/breast-cancer-services
Take care
Lucy BCC
Hi gymnut, sorry you find yourself here. Im 40 and also triple neg. Wait til you see the oncologists to see what treatments are really on offer. I’m having chemo followed by radiotherapy and for me, this will reduce my chance of it returning from about 48% to around 22%, so for me it was an easy decision. I’ve stopped reading about tnbc because there are some horrendous stories out there, but then i think those tn ladies who are doing well are just out and about living their lives and not writing on blogs etc so it might not be a fair balance. your oncologist will give you the real facts. I wish you well on your journey xxxx
Hiya gymnut, 6% does sound rather low to me. I used an online tool before I went to oncs which didn’t show a big percent. But my oncologist sat with me with the tool he uses and we inputted all the facts and info we had together. What im trying to say probably is some tools online might not be up to date or like me you might think you have all the relevant info but not quite. Your diagnosis and grade are same as mine I think.
It is blooming frightening, I’m sure if I was hormone positive I’d only be worrying and stressing about some aspect of that! We can’t win with our active minds!!! For me now, it is what it is, ive got breast cancer.
I really empathise with you, its horrible waiting and you can’t help wondering and searching! Breast cancer care is excellent in this country, I’m sure your oncologist will throw everything they can at it! Keep in touch and let me know what happens! Xxxx
Hi Gymnut,
I was diagnosed with a triple neg BC almost 12 years ago, which was almost identical in pathology to yours (1.2cm, grade 3, no lymphs, stage 1, some additional dcis). The difference was that as I was only 31 at the time my onc told they definitely recommended chemo (as well as surgery & radio). I believe in women who are a bit older the case for chemo is not usually so strong with an early stage BC.
I hated the idea of having chemo - I usually don’t even take aspirin & am very into alternative stuff - but I am very glad I did have it - I have been clear for almost 12 years now. The chemo was really unpleasant. But it doesn’t last forever and (in my case at least) there have been no long term side effects. My thinking was that if I didn’t have chemo and then it came back I’d never forgive myself.
If I were you I’d ask your doctors what they would recommend, and what they would do if they were you.
I should also add that I supported myself through the treatment (and beyond) with a really good diet, lots of supplements, destressing stuff like yoga, some massages etc. So I will never know exactly what it was that got me through this, but I wanted to do the best I could for myself.
Best of luck with whatever you do.
Bel x
Hi Rosie
Yes i was dx in 2005 with tnbc right breast grade 3 no nodes. Fec chemo and rads and all ok till 2009 when dx with new er+ primary in exact same spot under lumpectomy scar! Mastectomy and axillary clearance done but all nodes clear again. Very good prognosis then. 92% chance of surviving 10 years (huh!).
Total shock and disbelief last wk when dx with secondary bc right lung and hilar and paratracheal nodes. Having bronchoscopy this morning for biopsy. Need to know which bc its come from before deviding treatment plan. Terrified of the bronchosvopy…anyone else had this done??
So afraid of the future…i know ladies are living longer with this but still terrifies me…i had so much to look fwd to. Mortgage free from sept and was looking fwd to many nice hols. Our daughter and boyfriend just bought a house and we’re currently updating it. They bought it near us as shes a WPC and after shes had children i would have been on hand to help after she returns to work. Prob will never see grandchildren now 
Im a young 57 yr old
Bev xxxx
Thank you so much rosie for your comments. Bronch on tues was horrific in a word…never again! Was so distressed they keptme on ward 3 hrs after and when i got home went straight to bed for rest of day! Then yesterday just as i was coming round a bit at 10am the same hosp rung again to ask if i cd get in by 2 to have hysteroscopy done to check what this suspect growth in my womb was!
The ct scan last wk had shown possible endometrial cancer…turned out it was a harmless polyp which they showed me on monitor…also 2 lovely healthy ovaries. Theyre going to remove polyp in day surgery next wed under a ga.
Thanks for the info about sugar and will def take it on board…so are sweeteners better? Ive heard not. Does that include sugars in food too because nearly everything has sugars in these days!!
Jo - yes the live chatbsounds good. However i may be admitted next tues evening prior to my op first thing on wed. So may not get chance next wk…perhaps tues after. The following weekend then we’re off to greece for 2 wks. But when we get back i’ll be starting treatment and will be looking to chat to other ladies!
Love Bev xxx
By the way Rosie…my tnbc dx was in May 2005 so i had gone 9 years!! The Onc daid she is doubtful that this secondary is from that as its bern so long and they tend to occur in the first 2-3 years from primary dx (although its not impossible) as we all know from reading other posts here.
So mine could be from the 2nd primary in 2005 which was er+ but on both times i had clear lymphnodes so this is why its so hard to accept.
I hope and pray you continue to keep stable for many years…youre so young…same age as my son. Im a (very young!) 57 yr old.
Bev xxx
Sorry typo in last comment…meant to say last primary er+ dx was in 2009 not 2005!
Hi Ange and welcome to the BCC forums
In addition to the support here I am posting a link to further information and support which you and your daughter may find helpful over the coming weeks/months:
breastcancercare.org.uk/younger-women
Our helpliners are here for both of you too on 0808 800 6000, lines open weekdays 9-5 and Saturdays 10-2 so please call to talk things through
Take care
Lucy BCC
Hi Marj…sorry you’ve had to join this group but you’ll find there’s lots of support and encouragement here for you. I was diagnosed 9 years ago with triple neg bc and had s lumpectomy followed by 18 weeks chemo and 4 weeks rads. My tumour was grade 3 aggressive and 2.9cm.
You won’t be given any hormone therapy like Tamoxifen as your triple neg as it wont benefit you.
Do you have any family living nearby that can support you while youre going through treatments and go with you to hospital?
How old are your children?
Sending you a big hug and lots of love
Bev xxxx
Hi Marj
Sounds like you have a very clever 7 yr old!
My story is…and dont think for 1 minute that you’ll be the same…I had another new primary in same spot in same breast 5 yrs ago so had mastectomy and recon a year later. Sadly I had a diagnosis of secondaries on my right lung 2 months ago. But theyve told me its treatable with many many options in front of me yet as new drugs are being developed and used constantly. I was told by my breast care nurse that they almost treat it like a chronic disease nowadays.
I started oral chemo at home 3 wks ago and its very doable and I’ve actually gone back to my part time job.
I know of many ladies who were triple neg including a couple of my friends who are all doing fine…one is 12 years now from dx and the other 13 yrs! They dont take any other medication.
Good luck with your treatment and I know you’ll be absolutely fine. Just stay positive …sending you a big hug ?
love bev xxxx
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I had 6 sessions of FEC 9 yrs ago which a lot of people had
I tolerated the first 2 ok but then my veins collapsed and had to have a picc line fitted. Ws horrified at first but then once fitted it was do much easier to have the chemo and have bloods taken. You dont feel anything! I started to get side effects from around the 3rd one…like weight gain and sleeplessness from steroids and a general feeling of malaise and tiredness which lasted about 3 or 4 days after chemo.
I lost my hair but had a lovely wig…and this didnt bother me really. I think I felt worse coming up to the last one but then felt better knowing it was the last! But everyone has different side effects…you msy not get much at all
I had friends who had less than me.
Radiotherapy was fine…just had some redness under breast at the end and then fatigue in the afternoons which prob lasted for a year but thats not so bad…u get used to that and I was working 4 days a week at the time. Just keep in mind every chemo is 1 step nearer the end and youll be fine.
Good luck sending lots love xxxxxx
Are they any people with large tumour and nodes positive ?
Hi all, I was diagnosed a year ago just after my 40th birthday. Grade 3 tnbc, 3cm tumour no node involvement. A Lumpectomy, 6 chemo’s and a month of radiotherapy later, I’m back to normal ( the new normal post bc that is!) back to work and have a my appointment for my first yearly mammogram. I won’t lie, this isn’t easy to live with especially in the early days but it is do-able. I just try to get on with my life now though it’s made me look at life differently. Good luck to you all starting your journey. Keep strong, smile at least once a day, take it a step at a time 
x x
Hi pam, the chemo is hard going but you just put your head down and get through it. You have to think of the bigger picture and that the treatments are there to give you a bright future. I always saw it that if the chemo made me ill then it was doing its job properly. Now, I’ve come an awful long way in 12 months. its less important to me now that I had tnbc, I simply faced cancer and over came it. I’m getting anxious about my first mammogram but who knows what the future holds for anyone, I try to just live my life the best I can. I wish you the very best on your journey, hang in there, it’ll be worth it x
I have just been diagnosed with grade 2/3 TNBC .this has been caused by treatment received when I was 20 yrs for Hodgkin’s lymphoma. Thye are suggesting chemo first and then surgery. Has anyone else had it this way round, rather than surgery first. I can’t have radiotherapy as I have had it before when I was younger. I am terrified , any others had chemo first ??
Hi Dee,
I was diagnosed with triple neg BC aged 31, over 12 years ago (and have stayed clear since then). I found the whole experience of the shock of diagnosis, the treatment and particularly those first few years after diagnosis really scary a lot of the time. I think fear is a pretty natural response to it all, so if she gets like that every now and again (I still occasionally do even now) I wouldn’t worry too much. But I think it’s also really important, as you suggest, to counter the fear with as many positive stories as you can gather, and for your daughter to believe that she too can be one of these. Which of course she can be, especially as it was caught at an early stage. I was lucky to have had a very supportive oncologist who told me I’d be fine. In fact I ran into her on the street a few weeks ago and we chatted, I told her I was well and she said "of course you are - I knew you’d be.’ I hope this helps to offer a more positive eg of outcome with triple neg. I also suspect there are loads of others like me, who are also fine but busy getting on with life and not posting on this site! If there’s anything else I can do to help her let me know.
Bel
Hi Sarah222, welcome to the BCC forums where I am sure lots of our users will know just how you are feeling right now
In addition to the support here you may find the BCC ‘Moving forward’ information and support helpful and here’s the link:
breastcancercare.org.uk/moving-forward
Our helpliners also on hand for you Sarah so please feel free to call to talk any queries or concerns over, lines open during the week 9-5 and Sat 10-2 on 0808 800 6000
Take care
Lucy BCC
Hi Pam
How are you doing?? As you know I am TNBC too, just home yesterday after bilateral mastectomies. I think that WLE and lumpectomy plus radiotherapy is equal in results to mastectomy. I can’t have radiotherapy and so they recommended mastectomies . But I also think it’s whateveris best for you and what you can cope with. I am sure many others for mastectomy as personal choice ?!
Hope chemo is going ok for you
Sam xxx