I was diagnosed with TNBC in Feb 2010. I had a 3.5 cm tumor and no lymph node involvement. I had a lumpectomy and then chemo and radiation. Like a lot of you I live in fear that it may return. Every ache, pain, etc gets me going. I carried my cell phone in my bra right above where the tumor was found so I am now also participating in a study out of California involving cell phones and breast cancer. But like the Doctor said that is doing the study…“it took 40 years to link smoking to lung cancer so this will take a long time” but at least something is being done to research it. I have no family history anywhere of breast cancer on either side. I have some info I printed off of a triple negative breast cancer site and it said that most women with TNBC never have a reoccurrance and any other type of cancer after treatment so I am trying to hang on to those words!!!
Hi Ladies
I do not post very often as I can’t find my way around this forum,but I would like to know if anybody is taking Exemestane and being T/N.I have secondries to the sternum and a soft tissue mass to the chest wall that I had cyberknife treatment for in November 2012.I have seen the onco today for results of first scan since treatment and pleased to say the result was no further progression it is stable and no other spread.I was dx in 2007 with primary and it was ER5 PR- HER- I had WLE AND RADS and arimadex, now ER2 and told because it is weakly positive that it is T/N but Exemestane could help.If any of you ladies have been taking this I would love to hear if it has worked for you and are the side effects the same as all H/T drugs,wishing you all good luck with your treatments.
Linda G.
I am just bumping this to see if any body can give me any feed back x x
HI
Had results of WLE is IDC grade 3 TNBC again a new primary. Having SNB on July 17th then Chemo Rads again. Consultant has started the ball rolling to see if I have faulty gene as now had same in both breasts, and only 2 years apart.
More waiting!!!
Jill
Macie
Sorry I have no answer to your questions Hope someone comes along to help soon
Macie,
So far, only primary here, so can’t help you, but I just wanted to suggest you also post in the “secondaries” section of the site. You may well find there’s somebody there with experience of the same regime??
Oh btw, my recent ultrasound confirmed fibrocystic and glandular disease only in my remaining breast, with no evidence for malignancy, so agreed with what two doctors had told me on physical examination. I finally believe it, 
, but am still of the opinion that I would like prophylactic mastectomy on the right (a la Ms Jolie), and my BS doesn’t seem to think this unreasonable, and is referringe to plastics!
I had my last taxol today, and am tired but will be ready for rads next month!!
Hi ladies, I had TNBC grade 3 in March 2011. Had surgery with tissue expander, had active nodes. Had 3 rounds FEC and Tax. Had reconstruction by Diep flap in January 2013. I am clinically in remission. I know how frightening it all is but I had travelled to Nepal, India, Thailand, Bali, Spain and Canaries since my diagnosis. I live everyday with the fear it will come back, just like all of you. However Cancer should not define you or stop you persuing your dreams. Laugh in its face and go out and grab life, keep positive and ENJOY your Love and light to all of you xxxxx
I have been told my cancer is not related to hormones or Her2. Does that make it TNBC?
Kaz
tnbc has no hormone or her 2 receptors so tamoxifen and herceptin arent effective for these cancers… If this what yours is like then i would say yes its likly to be TNBC… But you would be best to ask your team or bcn to confirm that… eg they may still be waiting for results.
x
Hi lulu yes i was told that no hormone or her2 so wouldnt be needing tablets after treatment. Have been trying to read up on this today as the main reason I am so worried is that the onc said that recurrence is very high after treatment which I was quite shocked at. x
Kaz its not high… Its more common in tnbc and higher than people with hormone pos bc…
surgeons and oncs tend not to get worried about recurrence they look more at survival… Bet they wouldnt be saying that if they were on our side of the doctors desk though!
so in survival terms early stage hormone pos bc has a survival at 5 years of about 90% but for tnbc its about 75% so its significantly less and that is why the say that its bad… But to my mind 75% is still pretty good after all i was thinking when diagnosed it would be about 75% risk of dying from what i had read.
its more likely to return within the first two years following diagnosis… I got a recurrence two years later. But by 5 years its very rare to recur and they say that if you make it to 8 years you could consider yourself cured! Not sure i quite believe the last bit but it sounds very good to me and those with hormone pos bc never get told they are cured so there are some benefits to tnbc too… As well as not needing to take hormones and deal with those side efects… Unless like me you have had hormone pos bc as well (im just greedy… Lol).
my very dear friend also had gd3 tnbc… She had 12/20 positive nodes affected too… she is now 5 1/2 years since dx with no recurrence. So even with a poor prognosis it doesnt mean anything is a definite.
hugs xxx
Thank you Lulu24 I need to get myself back on my feet and start to feel more positive. I have a CT scan to come yet which may be worse but was told that if anything showed up on ct my treatment with chemo would be the same they would just be keeping an eye on other things. I think i was more shocked than anything when I was told about recurrence and that seems to be the only thing I can think about. xx
Hi Everyone, Just wanted to join your conversation. I was dx with IDC Grade 3, TN in july 2011. I had WLE SLNB 0/5 nodes with clear margins. My treatment was 3 x FEC & 3 x Tax followed by 20 Rad sess, then Nothing, which freaked me out to start with! I was forever checking myself and every twinge pain and ache messed with my head big time!
Then i decided to take control of the situation, I cut back on my obsessive checking and worrying about things above and beyond my control and started to move on from BC and make the most of my life. I do come onto this site as i feel it does help from all the positive feedbacks, but i backed off from coming on to often as i feel it sometimes drags back my fears which haven’t gone but are now on the back burner.
I know that i’m a little further down the line from you, but i’m by no means out of the woods yet. However i’d rather stay positive and look forward to the future rather than worrying about what may or may not happen.
Yesterday i had the results of my 2nd mamogramme since dx and it was all clear!
Hope your keeping well ,Good Luck and stay positive xXx
Great post KittyPxx and very encouraging x
Thanks Kittypxxx
Mxxx
Thanks Kittypxxx its good to hear your story. xx
Hi everyone, I hope I am not treading on anyine’s toes but is there any way we could ‘rename’ this thread? It has given me lots of info but as i am newly diagnosed the title really upset me as it impies that ‘survivors’ are not common when that really is not true according to my bc nurse?
Thanks, Sue x
I know it’s a little late but wanted to add a couple of comments. One, don’t worry too much (as if) about joint and leg pain - I had it for a good six months after my chemo finished (6xTAC). I too was paranoid and requested scans but all ok and it did go away. Two, I am now four years clear, and have had a second child since treatment ( my first was 8 weeks on diagnosis). There is life after, and these days I only really return here every jan due to oncology follow-up induced paranoia!
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I’ve just seen this thread, which I realise started ages ago, but just wanted to say that I am a triple neg survivor, now coming up to 12 years (with no recurrences since my original diagnosis).
Best of luck to you & everyone else.
Bel
That’s great Bel, thank you so much for posting again. I wish you well xxxx