Can we have a triple negative discussion thread on forum?

I am just wondering if there are other people out there with the diagnosis of triple negative cancer like me, who would appreciate a forum to discuss life issues that affect us. It is always encouraging to hear of new drugs and therapies discovered for breast cancer, but we appear to be a much-forgotten group, with no follow-up treatment available to us. I seem to think I may have read or heard that BCC may be starting a new discussion thread on this topic.
I would certainly welcome this addition to an already excellent site. Am I alone or would others welcome the chance for a discussion about treatment (or lack of it), the future etc.
Thank you.

Hi Annie,
I think I know what you mean.
I had DCIS 3 years ago, had mastectomy, so no need for rads, and wasn’t hormone receptive, so that’s it, no further treatment required. I was pleased at first not to be Tamoxifen or anything, but my specialist said it meant if it reappeared or anything he had no weapons against it! Thank you very much! I have 6monthly checks, or 3 monthly at the moment as there is something they are keeping tabs on in the other boob, but otherwise nothing, and I feel a bit abandoned.

There is a triple negative forum on the other site.

As well as the ‘other site’ which RMW has mentioned there is also a site in the US specifially for triple negatives. Its the triple negative Breast Cancer Foundation

There is actually much more information around these days about triple negative breats cancer than there was five years ago when I was first diagnosed.

Siversue…your specialist isn’t quite right in saying s/he has no weapons against a recurrence. There are a number of chemotherapies available for recurrent and metastatic triple negative breats cancer. Remember that some people with hormone receptive cancer find that hormonal treatments don’t work for them, and also herceptin doesn’t work for all her2+ cancers.

Currently there is resarch going on here and in the USA on chemotherpay regimes which may help triple negative breast cancer (e.g. carboplatin and ixempra). Some people think that the drug avastin may be particularly useful in triple negative disease, and also there is resarch on a group of drugs called PARP inhibitors. There is a trial of a drug (name escapes me right now…edited…its celecoxib) for people with early stage triple negative bc.

Triple negative disase is probably not one disease but several. Most BRCA1 cancers and triple negative but not all triple negative breast cancer is BRCA1. Some triple negative tumours are what are known as basal type tumours and are thought to be more aggressive but others are not.

Being triple negative doesn’t necessarily mean a poorer prognosis…it all depends on a range of factors including grade, lymph node involvemment etc.

But having said all this it is very scary to have triple negative bc (but its scary to have any kind of bc.) I have an incurable regional recurrence and have since my recurrence a year ago had 4 different chemotherapies. I’m very lucky that disaese has not shown up (yet) in major organs but I know when it does I have virtually no treatment options left. But my cancer has behaved in unexpected ways…and though my outlook isn’t brilliant its better than it could be.

I went over two and a half years after treatment finished for primary bc before my recurrence. Recurrences for triple negative disease usually show up in the first three years, but that luck wasn’t to be for me (I had a lot of nodes involved originally: 23). There is some resarch which has shown that if you get to 8 years without a rceurrence of trip neg. disase you are very unlikely to get one…

These are just bits and pieces of knowledge from nearly 5 years of trying to find out more…if you search for triple negatives on this site you will find lots of other threads.

best wishes


Hi all
I am triple negative (treatment just finished and NED at present) and am on the React trial, taking celecoxib (a non-steroid anti-inflammatory) or placebo. Apparently this drug has been found to be effective in bowel cancer trials and is now being tested for other cancers. Fingers crossed!
Sharon x

I was diagnosed on Feb this year as triple negative. It really scared me! I am glad to have stumbled accross this thread: it really is comforting to know that I’m not so alone out here! I am more scared of the words ‘triple negative’ than I am of ‘breast cancer’. It’s quite hard to get info of the oncologists and I cant figure out it that’s because they dont know or it they are being economical with the truth!! I had a mastectomy, no nodal involvement. I’ve had 3 cycles of FEC and have just started 3 cycles of Taxotere. I’ll have 6 weeks of radiotherapy then. Then it’s the waiting game, as Jane RA says 3-5-8 years of waiting to see if it will return!
it was lovely to read Jane RA’s email. Jane, keep fighting it girl! And thank you: I’m of to visit that website you mentioned!
Stork x

I have triple neg bc and have found JaneRA invaluable both as a source of information and as a fellow sufferer who 'tells it like it is.'I too can recommend the dedicated forum on ‘the other site’.

I too am triple negative and have found the site that Jane RA mentions as a valuable resource. It would be nice to have a dedicated forum on this site as well, as there seems to be an awful lot of women with this type of BC.


Hi all,

Thanks for your comments. I have brought this thread to the attention of the senior members of the team.

Jo, Facilitator

You can find more information about the REACT trial on:

As to whether there should be a separate forum for triple negatives yes maybe, though I think there is a case for other new discrete forums too.

I have been trying to get BCC to produce a leaflet on triple negative breast cancer for over three years now, and the relevant committees keep turning it down on the grounds that there is a scientific debate to be had on whether ‘triple negative’ breast cancer is actually a distinct sub type of breast cancer. I understand this debate but I don’t think its a good enough reason not to have an information leaflet, particularly in the light of increasing press interest in triple negative breast cancer. There are many myths that a leaflet could help dispel. I could have written, and edited such a leaflet accurately and informatively many times over in the time BCC has been mulling on this. Another example of the charity sometimes being very slow and unresposnive (though you do great work in some areas.)


Hi Jane,

I noticed that there were quite a few abstracts from the recent American Society of Clinical Oncology meeting that dealt with triple negative, so oncologists at least are finding the term helpful. I didn’t find anything wonderful for you, unfortunately (o.k., I am a bit of a dreamer), but they do seem to be paying more attention to triple negative now that the survival stats on her2-positive are up.

Wow! Thanks for such a good response girls. It is nice to know that others do exist out there. I have done my own research and found that the American sites seem to focus more on triple neg, but perhaps that is because there is a greater incidence of Afro/American women there, and there seems to be a higher incidence of +++neg amongst this group. Having said that, I am a 52 year old white British female, so I defy all the usual trend patterns!
My tumour was a highly aggressive 5cm tumour, stage 3, grade 3, with heavy lymph node involvement, and my prognosis is extremely poor. I am in a battle at the moment to try to persuade my Consultant to offer me reconstruction, as he told me quite rudely that it wasn’t worth it!! I am now seeking another consultant, who might have a better view of reconstruction with poor prognosis.
So thanks to you all for suggestions,Thanks Jane for site addresses, and to Stork for details of trial you are on. Information at last!! Well done to you all
With best wishes, Annie

Hi Annie…not sure if my story is consolattion or frightnener. I also had an extremely poor prognosi at diagnosis, diagnosed at 54…23/25 nodes with cnacer, 4cm tumour, grade 3 etc. I went three and a half years from diagnois to recurrence (regional…incurable), and though I am now nearly at the end of standard chemo options my cancer has not (yet) spread to major organs. Currently on a chmeo break and feeling well…it will be 5 years in October.

My cancer has turned out to be not quite as aggressive as originally thought…my onc thinks my version of triple neg. may not be a basal like tumour.

I didn’t want a reconstruction…can’t see the point (not because of shortnened life but just can’t see the point anyway as don’t find one breast a problem) but this should be your choice and unless there is a good clinical reason not to have recon the decision should be yours.


hello nanieannie

this discussion really intrests me as my mum is triple negative, so thanks. just to say that no consultnat has the right to refuse any patient a reconstruction, based primarly on prognosis. therfore i think that youshould def get a second opinion, or contact a plastic surgeon directly. anyway what does prognosis really indicate anyway, look at all the people still around years and years latter, and go on to forget about ever having breast cancer, who have originally been given a bad prognosis, and sadly look at these with a grat prognosis who sadly don’t. if you are fit and well and should have no problems with an anaesthetic, there really is no reason for a reconstruction to be refused!
good luck and take care

Thanks Jo and Jane. I fully agree that it should be my choice. I never thought that I would want recon., but I have three lovely baby grandchildren, and I find the prosthesis thing a real pain!! When he first rejected my request. I was gutted, and became very depressed. then I thought no-one is going to get the better of me, so I re-grouped, plucked up my courage and tried to insist, as best as I am able. He totally refused!! I am fitter and healthier than a lot of my friends, but I have b/c. How dare he!

I also agree that prognosis should NOT be a deciding factor. I have less than 10% chance of surviving two yeras, and may well go on for another 40. My mum had a very low-grade tumour, only needed a lumpectomy, was on Tamoxifen…really good prognosis, but died within 3 years, so there you go. A statistic is just that. A statistic and nothing more.


Nanieannie,I agree entirely with Jo re prognosis and reconstruction.Your consultant has no right to refuse you on the grounds of poor prognosis.I must say though that I wasn’t offered one(and didnt think to ask at the time) I was given a 35-45% chance of 5yr survival because of the nature of my triple neg tumour- infact they expected the cancer to return within ten months. Thankfully I’m nearly 5yrs down the line,NED and feeling fit and healthy.My dear friend who went through treatment with me and had a good prognosis went for a reconstruction.Sadly she died from secondaries 16mths ago.I’m quite happy with my body but if you want a reconstruction you’ve got every right to one!..Good luck,
love Josie x

Hi Annie

Unless you have stage 4 disease which I don’t think you do then a figure of 10% 2 year survival is very unlikely to be statistically accurate. Where why and how did your consultant drag that one up?

I think statistics can be useful guides to how groups of people are likely to respond…they never tell us about individuals, but your figure does not sound to me to be based on factal evidence at all.

At prognosis my stats were 40-50% 5 year survival and about 18% 10 year survival…I’m hoping to get to 5 years and think I probably will, but I reckon I won’t, bar a miracle, make 10 years.


Hi Jane,
Unfortunately this was obtained with my histology report and a couple of prognosis indicators. My tumour scored 9/9 on the histology scale for tubules, pleomorphism and mitosis, and this was explained to me in great detail by my consultant, as I have nursing background and he knows that I like to know what I am fighting. I can’t stand not knowing things,can you?!

Luckily I have a great oncologist who works alongside the surgeon, and along with my breast care nurses, they are supporting me with my decision to find another surgeon willing to do reconstruction.

I must admit that the urgency for reconstruction has faded a little into the background as I am suffering with severe back probs at the moment, not related to cancer, thank God!
Thanks Josie, that is extremely reassuring to hear how far away from your diagnosis you are.

Its a weird thing living with a ticking bomb isn’t it? Listening to the talks about the 2012 Olympics feels slightly surreal, and planning events takes on a different significance. Noone knows when that number 99 bus is round the corner, but we live with that fear on our doorstep all the time, while others never think about their mortality. I must admit that I never did. Now I live life as full and furious as I can. I NEVER put off doing anything or saying anything to those I love. I had a book published, did a stand-up comedy routine, and went cruising! I always loved life, and this has just sharpened up the colours a little, and made me appreciate everything even more. Does anyone think that way? Having a sense of humour really helps the difficult times. I am no longer afraid to be a fruitcake, if I can cheer people up.

Hi Annie

I hate not knwoing things either but I really do question the 10% 2 year survival prognosis…my score was also 9/9 and I had 23 nodes with cancer and my prognosis was worked out using Nottingham index and adjuvant on-line. You might be dead in two years as might any of us but I still doubt the statstics unless you were diagnosed at stage 4, or perhaps if you have IBC?

My onc expected me to have rapid recurrence but I didn’t…it took two and a half years after treatment and is still not in major organs. I know people who had much better prognosis than me 5 years ago, long now dead, and others with a bad prognosis still doing well…its that unpredictability thing again.

I wish could say I lived life full on as result of knowing I’m not going to live that long, but I just kind of jog along doing the best I can.

best wishes


Jogging along is good, Jane! We all must do what we feel right. I am certainly no sprinter. I read Jane Tomlinson’s book last year, and feel an outright snail! The most I could do during chemo was has a Mcmillan Coffee Morning for about 20 friends, and that was SUCH hard work! What a wooose!
Been lovely to have all your comments,
Best of luck with your future treament,