Hi Shannon, any information much appreciated. So far my tumour hasnt shrunk much, its just short of 8cm, but at least it doesnt appear any bigger, iv had the 4 EC and moving on to 4 tax so fingers crossed. I have made a list of things to ask when i see the doctor again.
take care
anna
hi all unfortunatly i am triple-neg too had cancer 3 times and 2 nd time was put on react trial as there was nothing else on offer, didn’t work for me only lasted 18mnths between 2nd and 3rd time, of course it doesn’t mean it will not work for everyone, anything is worth a try.
love reneexx
Hello
I too am on the REACT trial.
This link says more about it
If you click on the link and go to the bottom it lists the hospitals that are running the trial. I know this list is incomplete though as I am at the Luton and Dunstable hospital on the react trial and that is not listed.
Hopefully the information is useful.
Be aware though that 1 out of every 3 people on the trial will be on a placebo instead!!.
Hope this helps
Hi ladies ,
I too am triple neg , dx march 09 ,age 42 i had a lumpectomy , lump size 3cm no lymph nodes affected just finished 6 fec,s , 4 weeks of rads with 5 boosts in the last week, finished this week yee ha .
I am on the beatrice trial but didn’t get the drug , but im getting all the extras ie; regular checkups, heart scans, blood tests with onc and trial nurse, Im still attending the hospital , getting my dressing changed every two days after rads treatment,
If anyone else is on the beatrice trial and getting the drug i would be interested to hear how there getting on.
Good luck ladies whatever stage you are at with bc, remember think positive xx
Jules x
Hi all
I’m 43yrs and have been dx triple negative too. Had lymph node involvement 8 out of 20 or something. Can anyone explain to me what vascular invasion means as have that too? Ive had chemo 3 FEC and 3 Docetaxol then 20 rads and 5 boosts over the supraclavicular as had 3 or 4 cancerous nodes near collar too. I’m one of those people that need to know the ins and outs of everything. Dont think my diagnosis looks too great really, can anyone help put my mind at rest? Thanks D x
By the way vascular invasion doesnt mean the cancer will return any more than positive lymph nodes does.In both these cases chemo is prescribed to try to get rid of the cancerous cells and quite often that can happen.Triple neg is scary because there is no followup treatment and also it is commoner in younger women and can be more aggressive than the hormone driven ones but it isnt inevitable that the prognosis is grim and not all tn people die within 5 years.A lot,if not all,of the stats you read are based on people who were dx before the introduction of the 3rd generation chemos like taxotere-there are no stats on people with this treatment because it hasnt been licensed for primary bc for long enough.
The desperately sad fact about tn is that once secondaries do develop then there are fewer treatment options available.
Love Valxx
Hi
I too had a triple negative breast cancer. When I mentioned the fact to my breast doctor that it was just my luck to be one of the few with tn cancer he dismissed it saying he would rather me be tn than her+++ which is the more aggressive. When I was first dx I used to trawl the internet for stats on survival and prognosis etc which scared the hell out of me. I then made the decision that if I feel OK today then get on with life and don’t worry about tomorrow. None of us can read the future. I am a police officer and attend some horrific incidents involving young people in traffic accidents etc. It just makes me all the more grateful for the fact that I have a good family life, am well loved and up to now have being fit and healthy. Enjoy life and as my doctor and onc said don’t get hung up on the tn bit.
I’m 46 and have had breast cancer twice. The first time in 2002, right breast aggressive grade 3 and HER2 positive. Second time 2007, left breast Triple Negative. Coming up to three years now and more healthy than alot of people I know. I don’t belive people should get to hung up on the HER2, Triple Negative etc. It’s all down to the luck of the draw and I really believe that. We coudl worry ourselves sily if we keep worrying about prognosis. We’re well now and that’s all that counts. Take Care x
Dont feel so unusual being tn-(I am 54 ) Its good to find out some info as there seems to be so little.I had a 12mm grade 3 only detectable with x-ray etc near the chest wall.Have had a lumpectomy,6FEC and just about to start 15 rads.
The outcome of the chemo seems to be as predictable as the lottery so apart from keeping to my healthy diet and trying to keep as fit as I can there seems very little I can do except ignore it.
I must admit if it comes back I shall get a ferrari and have a damn good time-I am never having chemo again.Car
im 41 and have had BC twice… ER positive 13mm grade 1 stage 1 in right breast in 2006 and this year triple neg 19mm, grade3, stage 1, lymphovasular invasion but no nodes in left breast… im only on 2nd gen chemo… epi-cmf. had WLE and SNB for both.
had rads and tamox 1st time and this time im having chemo and rads and then to finish my course of tamox for 1st BC.
i read up loads and freaked myself out totally at the start and after having a very ‘good’ cancer 1st time i thought id be the same this time so came as quite a shock that it was a higher grade as well as TN and had LV invasion… but like everything i kinda got used to it and feel more positive about the future and just figure you only get one shot at life so im just gonna make the most of it.
take care
lulu xx
Hi All
The one thing that’s helped me is this site, talking to people and reading comments,I am no longer fretting about it all, I’m taking each day and each treatment now as it comes,obviously hoping for a good out come but you can’t waste your time worrying, and like you say Lulu you kinda get used it and start feeling positive, I’m facing chemo in a few weeks, so I’m getting myself organised, extra food in for the family, bits that I may need to make my life easier etc., which is keeping me occupied and making me think of different things other than BC,but then that’s my way of coping and others might find another way. Hugs to all take care Carole x
Hi All, I’m 59 and also tn, dx October 2008. Had chemo first, mx, then 6 weeks of rads which finished on 4 August. So now I have nothing - no check up until Feb next year and mammogram not until May next year. I also have lobular cancer which does not show so well on mammograms so I do not have a lot of faith in that. A question for those who have finished treatment - how often are your check ups and do you have any scans? My prognosis is not good as they think all my lymph nodes were affected and also cancerous node under collar bone which cannot be removed. I try to stray positive though and the chemo did work well so I try and hold onto that.
pp
x
Hi PP, I was told that a good response to chemo was a good indication, as always with this nasty disease it is not that clear cut, but my onc was really optimistic when I did have a good response… lump went from 50mm to 1mm during chemo. All my other indicators were not good - lump already over 3cm, nodes involved, triple neg… but he was really upbeat about the results from chemo - and I’m holding on to that, and feeling good for now, finished rads last May. I’m on 6 month check-ups, and on the REACT trial, but check-ups are nothing more than a blood test and asking me how I am!
Shannon
xxx
Hi all, I was diagnosed January 08, triple negative massive tumour 6cm x 4.5cm with lymph nodes involved, had six lots of TAC chemo first and tumour shrunk away completely. Then had bi-lateral mastectomy with axillary clearance on the side of the cancer, 5 nodes out of 19 affected with spread into surrounding tissue. I asked my oncologist why if the chemo killed off the tumour it did not affect the cancer in the lympth nodes and he could not give me an answer to that. So even taxotere, the strongest chemo that is sused is not the be all and end all for killing cancer cells. I had three weeks of rads to mop up any strays in the immediate area, but still wonder what is floating around elsewhere! Anyway as my husband keeps telling me, nobody knows when their time is up, so I live each day as it comes and make the most of everything I do and try not to think of the possible future too much.
Good luck everyone
Nonny
I have been told I am Hormone neg and protein neg. So just wondering what the third is. Is it another hormone? so making me triple neg?
I have been told I will go on clinical trials, but they were not sure about rads till I see Onc the day of my last chemo 14th Oct. I am so confused.I had a Full mastectomy and 10 nodes. One of which was affected. They are so vague, or maybe its me not knowing what to ask.
Can anyone shed any light? Please. Thanks in anticipation. xxx
PP there are two diff hormones… oestrogen ER and progesterone PR… and they count as one each and the 3rd is the HER2 protein.
the clinical trial thing you shouldnt be ‘told’ you are going on it… its entirely your choice… they need to provide you with written info as well as tell you what involved and if you wish to be included in the trial then you need to sign a consent form.
dont feel pushed into something your not happy with… there are a few trials going on… i wanted to be on the beatrice trial but couldnt cos i had previous cancer.
Peppapot yes you are triple negative welcome to our 'select’group within a group!As for trials there werent any when I was dx except one for a new anti sickness drug which I turned down.If you offered one read all the info carefully and make sure you are fully aware of potential side effects.as far as scans go all I have is an annual mammo.I was offered CT after treatment but refused-time enough if I have symptoms[hides head in sand].I see oncologist and surgeon every year worked out so I see one or other every 6 months.Surgeon Oct/Nov with mammo and onc July.Poke and grope each time.Have mammo first the see surgeon and get results at once.I choose to pay for this so I dont have to wait for any results.Have treatment if needed on NHS though.
Good Luck all of you
Love Valxx
Hi all
Purple Princess, my prognosis sounds similar to yours,was dx a year ago this Friday I had lymph nodes affected and 4 nodes under the collarbone which couldnt be removed. Those nodes have almost disappeared with chemo though so hopefully yours may have done that too. My follow ups are 3 monthly check ups, one time with the surgical team and then 3 months later with Onc. Im also having a CT scan every 6 months, next one on Friday, just to ensure the nodes under collarbone arent playing up again. Shannon mentioned the REACT trial and I asked about that, but I’ve been too long now since I finished chemo, its got to be within 12 weeks of finishing and mines a little longer. Hope that helps. Debs x
Oh thanks Lulu. That has made it clear for me. Now I know i AM T/neg. Thinking if the trials are held at N/tees I will refuse them now I know I have a choice.I have no car and travel would be a nightmare. Already looking at that problem if the decide I do need Rads. I have been having Chemo at Hartlepool General, but it will be James Cook Hosp for rads.
Will have to weigh up the pros and cons eh?
Thanks for your quick reply darl.xxx
Thanks for the welcome horase haha!! Long time since I was in the club hehe!!
I will studdy it carefully.