Hi everyone who is triple negative!!! Have taken the decision to start a thread of our very own since we are all so unusual!
Hope you’re all having a good day. I’ve had good news, I’m not a carrier of BRCA1/2 so am very pleased about that!! Got my full appointment on Monday so will get more info then. Doesn’t explain why I’ve been ‘blessed’ with this dreaded disease at my young old age of 26 but maybe it’s just bad luck.
Anyway, hope this thread develops a little!!! Or a lot!
LOL
Kate
Always happy to see more publicity for triple negs.As you know I was NED yesterday at my 2 year mammogram and consult.I have refused all other scans unless I have bothersome symptoms.I am unusual in that I was 62 at dx[trp negs usually younger women].I have a cousin who is now 7yrs[I think-at least]post dx and still NED.She too was dx at 62!All the rest of my profile is around on the forums.I suppose the other interesting bit is that I had taxotere after fec despite being node negative,grade 2 with no vascular invasion.
Hi Horace.
I suppose you was unusual at 62 to be triple negative but that’s just the way the cookie crumbles i suppose.
My profile might help so here goes…
Aged 26 at diagnosis (found lump when 25) in Feb '08.
Grade III, 12mm DCIS.
No node involvement and had WLE.
Had clear bone scan and CT scan which showed ‘lesion’ on liver
Had IVF treatment and have got 10 embryo’s stored.
Started chemo April 9th 2008, 6 x TEC (had Taxotere, Epirubicin and Cyclophosphamide)
Zolodex to protect ovaries from chemo for future fertility.
Finished chemo 23rd July 2008 and started 20 x radiotherapy on 15th September.
Treatment all finished but trying to rebuild mind set around cancer, uncertainty, not trying to get down in the dumps about it all so seeing counsellor once in a while and it all seems to be helping!!! But have had two periods since finishing treatment so pleased with everything so far in my recovery.
Kate
Hi Kate
gald you are on thw way to recovery and hope you are doing well.
I am 31 dx in August- Grade 3, 19mm, no node involvement, invasive and non invasive mixture.
They did not offer me any other scan. … Do you mind i ask why you had the scan if it is just DCIS?
I am on FEC kimo at the moment - ust finished the 2nd one last week. On Zoladex from Oct and will be on it for 2 years.
take care
Hi All
So wish i wasn’t joining in - dx Sept i am 36 - had WLE SNB Oct - grade 3 15mm no nodes involved
Have learnt so much about this complex world of bc which has both amazed me and shedded my head. I am starting chemo very soon - arm 4 of the TACT2 trial - accelerated epi and then xeloda - I have asked about why not Taxol chemo drugs (after reading on here and doing some personal research) to be told that it is not licenced in this country for node negative dx, and i see above Horace (great news on your recent mammogram too xx) that you were given it although no node involvement…sometimes knowledge is not power and can cast doubt especially for us triple negs where chemo is our only treatment…
Bestest wishes to you all xx
My oncologist said that for triple negs it is licensed for node neg dx and has been since mid 2007.I had it privately and when I started he said I wouldnt have got it on NHS then about April last year he was delighted to be able to tell me that it had been licensed and ALL trip negs could be given taxotere as first chemo choice.
It may depend on PCT where are you?The chemo you are given sounds pretty good to me-isnt Xeloda even newer than Tax?
love valxx
TripNeg here!
Just started chemo today for 2nd time, 40 at original dx in March 07, tumour 3.5mm, 8 from 13 node involvement, Grde II Stage III (I think) treatment was 4 X FEC 4 X Taxotere, 4 week rads. 10 months clear then a recurrance near primary site so now getting 6 x Carboplatin. Had portocath put in on Monday, they treid to use today, ouch ouch ouch, couldn’t get the line in after two attempts to resorted to fishing for veins, got one on 3rd try, right on knuckle! So first treatment done, now waiting to see what effects this one will have, tho am told carboplatin is ‘gentler’ than Tax / FEC. Will find out pretty soon!!
Live near Northampton / Milton Keynes, so at least shopping is an option when feeling I need cheering up!!
Luv and strength to all
Nikki
Hi
I was originally a triple negative, however on my third regional recurrence they obviously retested the cancer as it came back was border line HER2 so I was able to have herceptin which I am just about to finish. It feels strange not to be able to continue preventative treatment. Still I have had that little added protection, hope it works better than the first 2 x round. Still fit and well!
Cheers
Carol
Hi,
I was dx on fri 13th June 2008 with grade 3, stage 1, medullary cancer, triple neg and no node involvement.
Had WLE & SLNB on 28th June. Started chemo in July 4 x Epi 4 x CMF. Have just had 1st dose of 3rd CMF, so comming to the end of chemo at last. Rads start on Jan 7th for 3 weeks. Have just found a lump near original site. Had US & they think it is just a fluid-filled cyst(Post-op) , but will have to have it drained before Rads begin, as it is growing and they wont allow anything to be growing whilst undergoing Rads. Am so worried that it isnt just a cyst, and is a recurrence. Have almost convinced myself that I am going to have a recurrence anyway!! Is so difficult to think that after the end of Jan, and Rads are finished, then that will be it!! Treatment over! xx Julie
Hey Julie
Glad you’re getting to end of chemo, it’s such a relief isn’t it! Rads are ok too, you can put them to the back of your mind with xmas etc. Won’t say you’ll forget about it cos that’s just silly! Also won’t say ‘don’t worry’ cos that’s annoying cos you still worry. It’s good you’ve had ultrasound too, they’re usually pretty accurate. Hope you get on ok with that.
I’ve been worried about pain in my ribs but have seen physio for my shoulder pain (9 months post op!!) and they’re convinced and I am now that it’s muscular pain. Still gotta have bone scan next week just to make sure but understand the worry completely that it’s something else come back. I know somenone who had a cyst under her arm after breast cnacer and reconstruction too so maybe it’s a common occurence?? Anyway, have a relaxing weekend if you can and stay online.
Kate
Hi girls,
Its good to have athread on triple negative.2 days ago, i had my last weekly session of Taxol( Paclitaxel) and will have my oncology clinic post chemo on Monday,also to detemrine when to take my hickman line out.I am due to have radiotherapy in Dec,so need to know when the line is to be out before i have my simualtor.
This year is my 2nd primary BC.Originally ,i was dx on 9Nov05,had right breast mastectomy,lymp node clearnace then 6mths chemo Epi-CMF then 25 raiotherpay sessions.Managed to go back to work for a year in 2007 then another primary was detected in mammo and also i noticed fatty tissue under left armpit…hence all checks.US,biopsy and CT scan,bone scan had been done.So this year,I had to have treatments again…left lumpectomy only,then 19 out of 31 lymph nodes affected, 6mths chemo,which i just had the last one 2 days ago as mentioned.So far,managed to have Taxol weekly as opposed to Taxotere which was given to me im May but had bad allergic reactions,hence changedover to Taxol.
One thing i realized this time round was that I had the misconception that of triple neg.I thought i was better off not having 5 yr tamoxifen like the others after chemo and radio.I didnt realize that triple negs was more likley recurrence in the early 2-3 yrs.well,my one was exactly 2 yrs.Onc said it is an occult new primary as my MRI scan didnt show anything.First time around in 2005/2006 i never had a CT,bone nor MRI scan.This year,i had the whole lot perhaps to check thoroughly.I had bonescan 2x now ( Feb08 and July08)as they are monitoring my left shoulder.right hip and left ankle.I think i might have naother one in Feb09.See how it goes.
I had pain in the ribs before in 2006 put it was due to post op and post radiotherapy muscle pain.
Radiotherapy is scheduled for Dec/Jan in Royal Marsden Chelsea, so i will have a few weeks of no treatments.
Regards to all triple negs…
Veeluz
Hi again,
By the way,i forgot to say that in both times, I was dx with stage 3 and both with lymph node clearance.Hence,i got a hickmann line for chemo and blood test purposes.Well,i think i will miss it in some ways.During chemo this year,no veins need to be poked…hence less stress.
Bye for now
Veeluz
Hi all
I was dx in April, Grade 3, 4cm lump. Had chemo first to reduce, which worked and then had WLE and SNB in October, and breast reduction. Nodes and margins clear, and now just started rads this week, until middle december. Triple neg to, and must admit, i am worried about it, with not having any medication to keep it at bay. Does this mean my chances of a reoccurance are high? on second thoughts, dont answer that one!!!
anyway, glad there are plenty others out there the same, as though you were all few and far between!
big hugs to all
deb x
DX In October 08 aged 29, Grade 3 BC Triple Neg, had lumpectomy and now Mastectomy awaiting to start chem in next few weeks for 6 short sharp bursts was how it was worded!! Just wondered if anyone is in a similar situation who did not have a reocurrance who are some years down the line- thats the part that worres me the most. Even being told that after treatment I have a 15% chance it will come back - which is good I think, Would love to hear about success stories!!
My cousin is 7 years without recurrence[hormone neg-herceptin not tested then]I am 2 years and there is at least one lady I know who is 8 years with no recurrence.Remember the term triple neg is fairly recent so there may be many very long term survivors who dont know they were triple neg…As my surgeon said its no good fretting about what you cant change.Good luck.Love valxx
Hi All,
My Mother diagnosed ERneg 20 years ago (they hadnt discovered HER2 then) no chemo, just radiotheraphy following partial mastectomy. Still here aged 75, never had a recurrence…
It gives me hope, 3Neg DX Dec 2007.
Cheers
Katie61
I’m coming up 5yrs NED and holding on!!
Five years ago when I was first diagnosed the term ‘triple negative’ was hardly used in the UK. There was a short time in 2004 when if I googled ‘triple negative’ my own posts on these forums came up first! No more…triple negative breast cancer does have a higher profile now…though I’ve consistently failed to persuade BCC to produce a leaflet on it. Now too there is a discrete US site for triple negatives tnbcfoundation.org
But with the higher profile I do find there’s more myths and misunderstandings growing about triple negative bc. For starters ‘triple negative’ isn’t one kind of breast cancer…it’s just a blanket term used to cover a number of different breast cancers which are not er+ pr+ or her2+ Most BRCA1 and BRCA2 breast cancers are triple negative but not all triple negatives are BRCA1 and BRCA2. Then there are basal type breast cancers which can be particularly aggressive and most basal type breast acncers are triple negative, but not all trip negs are basal type.
Triple negative breast cancers don’t all in and of themselves have a ‘more aggressive’ profiles than other breast cancers. Other factors contribute towards aggressiveness like the grade of cancer and the extent of lymph node involvement. So if you are triple negative without node involvement then your cancer may not be ‘more aggressive’. Women with er+ and pr+ tunours which fail to respond to hormonals are in a pretty dire position for example. There are many long term triple negative survivors though remember the term is only a few years older than 5 so talk of people from 20 years ago is inaccurate…you are unlikely to know.)
Triple negative breast cancer, if it is going to recur, may recur earlier than er+ or pr+ cancer where women have hormonal tretament for a few years after primary diagnois. But the flip side of that bad news is that the longer you go NED with triple negative disease the better your chance of not getting recurrence and there was some recent research which suggested that if you get to 8 years NED with trip neg. disease that you are very unlikely to get recurrence…which is not the case for many er+ and pr+ women with breast cancer who get mets after 10 years, 15 years.
Every time this thread comes ot the top my heart misses a beat and I feel irritated…I am triple negative and I’m not going to survive…sorry to be a party pooper! But even in my case the news is less bad than it could have been. I was thought to have an aggressive trip neg cancer at primary diagnosis 23 nodes with cancer and vascular invasion but I managed 2 and a half years NED before regional recurrence 18 months ago. I’m 5 years down the line from primary diagnosis, and the news isn’t now good for me…I am almost at the end of treatment options…my cancer doesn’t respond to chemotherapy (so much for the only half truth about trip negs responding ‘better’) but the cancer hasn’t spread as quickly as anticipated…indolent and prsistent is what one oncologist described it as…For some it is much more aggressive. There are very few women who use the secondary forums here who are triple negative…why is this? Because younger and black women who are more likely to have aggressive trip neg disaese don’t use the forums? because trip neg women are just dying quicker? Or because not so many are getting recurrence? Who knows?
Treatments for trip neg disease if you get a recurrence are limited (don’t believe the hype on’wonder drugs’ like avastin). I’m dead scared right now as I literally watch and feel my tumours growing in my neck and chest and nothing is stopping them and I’m nearly out of chemo options and don’t quite know ‘what next’. Much more research needed, breakthroughs in targetted tretaments needed…just so much more to be done.
Many trip negs are going to be just fine, like many others with early stage breast cancer, but spare a thought for those of us who were never ‘early stage’ who with the best determination in the world cannot boast: " I will survive."
Jane
Hi All
Dx 18th March 08 with 15mm Grade 3,lumpectomy,1 node out of 12, 3 FEC, 3 TAX and 15 + 5 (boosters) radiotherapy TRIPLE NEGATIVE aged 41.
Finished Chemo 29.7 and radio 16.9 and got back to work 1.10.08.
Feeling a little low for about 3 days now and wonder if it is hormone related. I haven’t had a period since late June but on Thursday I had a ‘show’ but nothing but very very slight bleeding since. My onc said they probably wouldn’t come back but it looks like maybe they will.
I am scared that the C will come back and know that I am high risk for at least a few years I cannot stop feeling around the scar area and my arm pit. I have convinced myself that there is a lump in my arm pit but putting it to the back of my mind as it is most probably scar tissue.
I really need to give myself a kick up the *rse to shake off these feelings. I want to feel normal and well and am sure that its all in my head.
Anita
Dear Anita, I found the lump just after my 45th birthday,and after chemo my periods never came back.This I didnt mind at all as I have always suffered from bad pmt- so I’ve sailed through the change with no side effects at all! As for worries that the cancer will return I think we’re all in the same boat.It does get better over time but I’m still the hypocondriac that I never was in pre BC days.Thank goodness I’ve learnt that a long hard walk or a change of scene helps gets rid of the
gremlins
Dear Jane,We were diagnosed around the same time and you were the first person I knew who was also triple negative.I was gutted on reading it had spread and I understand completely about the I will survive bit- perhaps it could have been rephrased after all who knows whose going to survive this crap desease.