I was diagnosed with Triple Negative Breast Cancer in December 2007 and am undergoing chemo AC x4 followed by Taxotere x4, then surgery and then rads. I was feeling quite positive about beating this horrible disease, but after reading yet another article (in the newspapers/women’s weekly magazines) sensationalising this form of breast cancer and how it is more aggressive and more likely to spread etc, it seems my positivety has completely gone. Would love to hear from other women who have been diagnosed with Triple Negative and whether you feel the prognosis for this type of BC is less good than with other types of Breast Cancer.
Hi ,
I’m not triple negative but if you type “triple negative” into the search bit on this site you will see many postings from people who are - their comments may help.
Janeyb
x
I am triple negative had exactly same treatment as you.Was given a prognosis of 85% chance of 10year+ survival.There are no ‘good’ breast cancers but ours is not all negative.There are other threads which go into detail I will try to find the most recent and bring it to the top for you.Good Luck,horacexx
Triple Negative:
Hi there doyle j ,
I was diagnosed september 2005 Triple negative I did chemo /rads and had a grade 3 stage 2 breast cancer .It was a hard road but on the mend now doing the walk for breast cancer in june I have had 2 mamograms and there is no evidence of disease (ned) as yet so things have been good on that front everyone is different but be positive and keep well you will get through this though we have no follow on drugs but they say chemo is the best for us thinking of you
annieann
x
Hi Doylej
I was dx’d triple negative December 2005, I too was a little worried about the aggressive nature of this after reading articles.
Well I am two years down the line first having treatment like yours. I have had two recurrences, first in the lymph nodes secondly in the same breast where the lumpectomy was performed. You might think, see it is aggressive, I suppose there is grounds to think like that. I still remain positive though as it is still classed as regional recurrences. I am seen by the doctors more frequently now.
Ironically they tested the new lump and it was found to have borderline receptors for Herceptin. Oh good I thought this is another tool in my armour. Well I read that if you have the receptors for Herceptin it means you have an aggressive cancer.
I look at things like this, being triple negative means there are limited follow-up drugs for us. However I have had all the treatment available to me and hopefully this time we are on top of the little blighter. I just take one step at a time because I am not going to live what ever time I have worrying about dying because as yet that’s an unknown.
Take care good luck with all the treatment.
Carol
Hi Doylej,
like you I was dx. triple neg, grade 2 in December 2007. I’m having exactly the same treatment as you - 4AC, 4Taxotere, surgery (?),then rads. As Carol has already said, the main difference between neg. tumours and positive ones is that the follow-up drugs such as Hercepin, Tamoxifen won’t be of any use to us. I’m due to have my 4th AC next Thursday. I’m constanlty worrying whether the chemo is working, praying that it will shrink the tumour sufficiently so that I can have a lumpectomy instead of a mastectomy. I have read that triple negs can respond well to chemo,let’s hope so!
On a positive note, my Mum had triple neg bc in 2001 and she is fine now. She has regular check ups but is living life to the full,so triple neg is not all negative!
You take care & good luck with the rest of your treatment.
We will find the faith to beat it. LizaRad xxxxx
Hi everyone
I was just dx yesterday with triple neg, I also had my 3rd pulse of chemp yesterday as well. Quite devastated by the news. I’m getting FEC at the moment and due a CT scan at the end of the month to see if theres any progress. Depending on that I may continue on FEC or be changed to taxatere. Mastectomy due in May sometime followed by radiotherapy. I’m only 33yrs old and finding it hard at times but staying positive as much as poss as I believe that if I give into this disease then it will get the better of me and I still have far too much to give to this world before I go especially to my seven yr old son. I do have moments that I cry my heart out but they only seem to last for a short time then I’m back to normal
Try to be positive
Lila
Hi doylej
When I was diagnosed in October 2003 the phrase ‘triple negative’ was hardly ever heard. There was a short time in 2004 when if you googled triple negative breast cancer you would only get references to my posts on this site! Certainly not the case now.
I’m really glad that in the last year or so ‘triple negative’ breast cancer is beginning to get the publicity it deserves…in the UK this has been prompted by Breakthrough Breast Cancer’s support of a triple negative clinical trial for recurrent/secondary triple negative disease. The current wave of magazine articles owes much to the publicity which Breakthrough has rightly given to this kind of breast cancer.
The downside is that press accounts always simplify and sensationalise. So myths are abounding about triple negative disease.
It is not necessarily ‘more aggressive’ than other kinds of breast cancer, although it can be, particularly as there are currently no targetted treatment options. Other factors such as grade of cancer, number of lymph nodes, stage at diagnosis, responsiveness to treatment, all play a part in determining prognosis, as they do for all breast cancers.
If triple negative breast cancer spreads it is statistically more likley to do so in the early years afer diagnosis but once you survive 5 years it is les likely to spread than er+ pr+ cancers (other prognostic factors being equal) and some recent research suggests that by 8 years with no spread the risk is negligible.
I had a very poor prognosis at diagnosis but this was because I had a lot of nodes (23) with cancer. I actually did very well to be NED for three and half years after diagnosis. I now have a regional recurrnce which isn’t responding to several kinds of chemo so I’m in a scary place with limited treatment options left, but I know other good new sstories of women living a long long while after triple negative diagnosis. Its annoying to read sensationalised reports but it IS good that more research is happening now…not just trials, but research in the lab to find out what receptors make our cancer grow, Once they are discovered then targetted treatments for the future can be developed. So much more is happening now than was 5 years ago.
There’s a link here to some good information on the myths of triple negative disease.
http:/bcwatchdigest.evidencewatch.com
best wishes
Jane
What is triple negative? (Why Triple?) Is it any difference to Hormone negative?
Fudgey
It means your breast cancer is not hormonal i.e. er+ or pr+ and it’s also not HER2 positive.
Ruby
Hi
I am triple negative, had TAC chemo masectomy with 21 of 24 nodes affected and finished 15 Rads two weeks ago. I was worried that there is nothing else to throw at it, but my CT and Bone Scans were clear in Dec. and the Onc. said should not assume that just because my cancer was very agressive that I would not still be alive in 5 years. Not a very reassuring thing to say but he does believe in not sugaring the truth. I have decided to be positive and that I will reach my pension in ten years.
Val
Thank you ladies for all your responses and especially to JaneRA for her informative response and who has put my mind at rest that this type of cancer is no worse or no better than any of the other types of BC out there. JaneRA - I really hope things turn around for you and you start responding to the chemo - please let me know how you get on. I guess the upshot is that having any type of BC is never a good thing and much depends on a number of other factors which determine prognosis. On hindsight, I think the recent spate of publicity can only be a good thing in raising awareness particularly among younger women. It is just very scary when you have just been diagnosed with Triple Negative to pick up a newspaper and then read a heading entitled “The new deadly form of breast cancer” more aggressive with less treatment options. My Onc is heading a trial for advanced Triple Negative patients to determine whether a more targeted form of chemo would be more effective than what is currently being offered. Let’s hope in years to come they will also come up with other options as well as chemo to treat this type of BC. Thanks again and best wishes to you all.
Hi Guys,
I just thought i would reply and say yes it is scary being so young, i was diagnosed in June 2007 with Grade 3 BC triple Neg which has spread into my lymph nodes. I am only 24 and as you say have loads to do in life. think that drives helps, people say how well i have coped with everything, now finishing 6 months of chemo, had Bi lat Mastectomies and on to Rads next. I think being young is a huge advantage, we bounce back quickly and have loads more to see and experience in life to give in. Like everyone with BC what ever age. After losing most of my hair (used the cold cap) it has now started to grown back, just had it cut for the first time in months, it now has style even if it is shorter than my boyfriends! I never thought i would be daring enough to have short hair and now i love it!!
Good luck to everyone.
Al xx
Hi Guys
I am triple negative too. Mine is called Medullary cancer - anyone else have this?
Like you some of you I am on 4 x FEC then 4 x Tax then rads (having 3rd FEC next Monday)
Very helpful to find others in the same position. Thanks for all the info Jane- wishing you all the luck in the world.
FizBix x
Me too, I’m triple neg.Had 4 FEC and 4Taxol + 6 weeks of rads after lumpectomy and aux clearance in January '04…Cant beleave I’m 4 years down the line!
Josie x.
Hi Doylej
I am also triple negative, just coming to the end of my treatment - last Rads tomorrow. I have done 3 xFEC, 3xTax, Bi-Lat Mastectomies last year. Just wanted to say it is all scary to start with, but you learn to deal with it a little better (never completely) as you go along. I panicked about being Triple Neg, but soon discovered that there is not really a good or bad one to be diagnosed with. Jane, as ever, says it all in her post - we would be lost without you Jane!!! Thank you for your informative posts. Hope you are getting on a little better.
Good luck with your treatment Doylej and everyone else - keep us posted. Oh and thanks Josie for a good news story. I hope I can be posting something like that in 4 years time too.
Best wishes
Ali
x
I’m also triple neg. I was diagnosed with a 3cm grade 3 tumour in April 2005 but with clear nodes. 3 years on, I’m feeling absolutely fine, clinic check ups are now only annually with my mammogram. It seems a long time ago now and just wanted to reassure anyone newly diagnosed that it’s not all doom and gloom. I (like all other triple negs) had the best treatment available to me but I agree that there is some scaremongering with the press. It doesnt take much to get the imagination working overtime!
I can’t believe that I’m soon going to be into my 4th year since diagnosis and I certainly class myself as a breast cancer survivor.
Good luck and my warmest wishes to JaneRA who’s messages I’ve been reading for the last 3 years. Hope all turns out well.
Love
Bev
Just a little pinch of positive for all you trip negs. I have a friend who is trip neg, 3 tumours measuring 7cm, and spread to 14 nodes.She is NED after 5 years.So good luck to us all whatever our pathology in this uncertain world we find ourselves.
Cherry
Just been diagnosed withTriple Negative about an 3 hours ago and i can’t stop crying - i can barely see the screen - i have a baby and a toddler and was 33 last week and I’m soscared, been so brave up until now and now i’m falling apart. I can’t take it reccurring somewhere else, i’ve struggled with the tow kids and two ops in the space of 6 weeks and now this. There doesn’t seem to be ANY positive info about it on th whole web, my doctor said it being HER neg was a good thing - why does he say this??
Lola belle -I understand your panic and fear. Please read the comment above.Other factors are also important with BC diagnosis , grade , node involvement and HER 2 status. HER pos tumours are generally regarded as being more aggressive than HER neg ones hence the comment from your Dr. However those with HER + tumours can be treated with herceptin and for many it will reduce the risk of recurrence.
Cherry