Any triple negative survivors out there?

[Guest user]

I am ER+ but met a girl at the weekend by pure chance (drunkenly got chatting to her) who had TNBC 7 years ago at the age of 26. I don't know all of the details, but that it was a relatively large tumour and lymph nodes were involved. I was really grateful to meet her as she showed me her recon (which was amazing) and also had gone on to have children, which I am praying to do. She gave me a real boost.

[Carabel]

Hi
I too have grade 3 triple negative breast cancer. Currently two thirds of they way through chemo - 3 x FEC and 3 x Docetaxel followed by rads. Already had wle and lymph node clearance. My mum also had triple negative and is now at three years and doing well. Am awaiting results of genetic testing and will the make some decisions regarding any preventative surgery etc.

[Stitchyboy]

Hi,
I was Dx with Grade 3 Triple Negative 19mm IDC the middle of January this year, I have just finished my last chemo of 3 Fec 3 Docataxel. I know how you all feel I am also frightened by not only having BC but being TN, somethings I read scare me but other things like what have been posted on here give me hope, so thank you. I have also been told that the Tax works well on TN. Feels very surreal when you read that this was not around 10 years ago so I feel very lucky that it is for us now.

I had chemo first and am expecting to see my surgeon soon to discuss surgery. I have told my oncologist that I defiantly want a mx rather than a lumpectomy especially as being TN, then after surgery will find out about nodes and radiotherapy. I will also be tested at a later date for the BRCA1/2 gene.

Although I do find it daunting that we do not have medication to take like others that are HR+ etc I do have one family member and a friend that where on tamoxifen and it still came back, so obviously no guarantees even then.

Thanks again for the positive posts, it really does help.

Sarah x

[horace]

Your chemo is third generation and is currently the very best available for tnbc.I am not on this site very often but if you need me just pm and I will reply.When I was first dx I was so afraid of tn-all the news was bad.The first glimmer came from some canadian research [there was a link on he old site] which said that ,although tn was more aggressive than +++bc for the first few years , if you got to 8 years with no recurrence you were consideed 'cured'.That was when they had just started using taxotere almost routinely for tn.Remember that the term 'triple negative' was not used until about 7 or 8 years ago[certainly in UK].Then,in the last couple of years the goal posts have been moved to 5 years.I couldn't believe it when I got there!
Of course I know that there are no certainties with any bc,no guarantees of 'cure' but at least tn is no longer as terrifying as it was.The problem still remains that tn secondaries are harder to treat than +++ or Her2+ secondaries which is why oncologists tend to 'throw everything at it' when is at primary stage.However there is new research all the time and hopefully there will be new treatments for tn secs soon.
Good Luck all of you
Valx

[Guest user]

I know each case is different and I can't compare my bc to some else's but it does help to know their are survivors out there. Once first diagnosed I searched the web and ended up terrified. Hoping that once the boob is gone and they have zapped it that I will be ok.

[Miadanu]

Hi Rexi and Amylou20,
Just a quick post to say yes there are - I'm one of them. Only 2 years so far but reasonably confident that I'm through the worst and can look forward to the future.
I was diagnosed 31/03/10 at the age of 35 with grade 3 IDC (15mm), Triple neg (ER- PR- HER2-), stage 1 (T1c-N0-M0). I also found that I have a genetic mutation: BRCA1(4327C>T) which predisposes me to BC and OvCa,
From April 2010 onwards I had a lumpectomy & SNB followed by Chemo FEC-T. In November one month after the end of chemo I had bi-lateral mastectomies with immediate DIEP (SIEA/MS2-TRAM) reconstruction. One year later I had my ovaries and tubes removed. Now it's just the check-ups and side-effects of menopause to deal with - but as far as I am concerned the cancer is gone (and long may it stay away).
The regime you are on is third-gen, the 'T' (docetaxol / taxotere) are very good for us triple negative peeps and mean it isn't the death sentence that it once was.
I don't visit this site often but I wish you both all the best with your treatment going forwards. Feel free to PM me if you wish and I would reply to those.
Keep the hope 😉

[Guest user]

Hi hun.
i was diagnosed with triple negative December 30th. had wle and node biopsy on 7th of Feb. have nodes involved, currently having chemotherapy the same ones as you will be having my 5th on Thursday. its stage 3 which was unexpected. after chemotherapy having a double mx and immediate recon then rads but they've not told me how many yet. I would love to hear good stories too as i turned 30 last week and have an 20 month old little boy and a 7 year old daughter. hope you don't mind me posting on your thread x x

[Guest user]

What's third generation chemo? I'm having 3 doxetaxal & 3 fec

[horace]

tried to edit but couldnt my dx was 2cm idc with area of dcis around it[Grade2]no nodes involved and surgeon got clear margins.

[horace]

Hi love I was dx with tnbc in October 2006 so I passed my 5 years post dx last year and am now 5 years post treatment. I had wle,chemo [4xfec and 4xtaxotere] followed by 15 rads.The treatment was hard but I have now been discharged by oncology and am having biennial mammos and annual appts with surgeon.Research has shown that if you get to 5 years recurrence/spread is very unlikely and if you get to 8 years almost unheard of.The difference seems to be what is known as third generation chemo [including taxotere] which can have a devastating effect on tnbc.Come on ladies-it can be done 🙂

[Guest user]

Nobody can say, when our live will end. A healthy man can die now and ill can live long, that is absolutely wish of God. So we should not loss our heart. Pray and hope are very helpful for surviving well.

[charhie]

my friend does not have access to forum but she is now 6 years from dx she was grade 3 stage 2 and she is doing great has had no problems since completing her chemo and rads and living life to its full.
x

[Guest user]

Good to hear from anyone really. All a bit scary at the mo, got 2 more chemo, surgery and rads to get through. What was your diagnosis and treatment?

[Rexi]

Kat,

I can only offer one year at the moment 🙂
Going through a doubting patch at the moment too. Would be great to see responses, however just because they don't answer does not mean they don't exist. They probably will have moved on with their lives, rather than hanging out here 😉

Rexi

[Guest user]

Hi I was diagnosed with triple negative invasive breast cancer with positive lymph nodes on 21st may. Had my 4th blast of chemo on Thursday, due full mascetomy and rads. Just finding it scary that after all this there is nothing else for me to take!

You read so many positive posts regarding getting through 5,8 10 years on here, just wondering if there's any triple negative survivors out there?

Kat