Hello ladies
i felt on top of the world yesterday, but then i read up on triple neg which i am then my world around me collapsed, i fell sick to my tummy and feel my life is over, im starting x6 FEC on friday, then need a mx then rads to be on sure,
please help me get through this
thankyou
Donna xx
Hi Donna
I am not triple neg but I know a lot of ladies who are. Reading on the Internet can be very upsetting, I have done it myself. My cancer is her2 + and that is considered aggressive, so grade 3, so are some er+ cancers. The word aggressivevis used a lot, not just in the case of tn. It is said that tn cancers respond v well to Chemo and that recurrence after 8 years clear is v unlikely ( other +++ cancers can recur at any time) you will not have se from tamox or herceptin.
You need to discuss your fears with you medical team. I am sure that they will be monitoring you closely and absolutely making sure that the treatment they give you will be the best for your cancer. If you want to get them to show you how much benefit your Chemo will do you. More you know about your treatment the more confidence you might have that it will work for you.
Debx
Hi Donna,
Reading up is so easy to do & we all are guilty of it but each & everyone of us on this site would tell you not to do it, many of the stats etc are out of date & do nothing more than frighten you.
I myself am not triple negative but I have spoken with & met many people who either are or have been & have done or are doing really very well, please dont frighten yourself & i am sure that soon one of the ladies with a better undertanding of TN will reply & offer you some reassurance, in the meantime stay away from googling 
What date have you got for your Fec to start ? I am 6 x fec & start on the 9th Feb, am not sleeping so good in the run up to it, i think nightime is always the worst time for our fears to rise to the surface.
Love & hugs
Sarah.xx
thankyou deb
Sarah in start tomorrow, i read about the TN on here and my mind went into overdrive,
i too find night time worse
thank you lovely ladies.
love and hugs
Hi Donna,
well we are exactly a week apart so can do this together & help each other along
Sarah.xx
Hi Donna, I am triple negative, had the mx first, with anc 2 +ve nodes. Had 2 of 6 lots of chemo, will have rads after.
I too have checked out the stats and they don’t look great, then again stats said 9 out of 10 lumps aren’t BC! 10 - 15% only will be TN you can go on on, been on the wrong side of the stats, this time might be on the right side.
Whichever way it goes, I can’t say but I will enjoy as many days as possible and I must say have not been as bad as I feared from either from the surgery or chemo, I still have good days unfortunately that means I go out and spend money!!!
I wish you well and may we both beat the stats and make it to the 8 year mark (somebody has to it might as well be us). Pm me if you want to
Pat
Hi Donna
Please remember that you are welcome to call our helpline, you can share your worries here and talk through them which may help. The line is open 9-5 weekdays and 9-2 Sat on 0808 800 6000.
Take care
Lucy
Donna
We’re with you all the way through this. I’m the opposite with triple positive Grade 3, so I get the joys of Herceptin and Tamoxifen for years, plus HER2+ cancers are (I’ve heard) more likely to recur, so having something come back in the tests as positive isn’t necessarily a “good” thing. That said, I know neither of us wants to be here so have a hug from me, and keep posting if it helps you get through the night. (From one late-night poster to another.)
CM
x
I’m not triple negative but er and pr +. But I had a large multi focal area of invasive cancer, 3 positive nodes and fatty tissue invasion around one of those nodes, not a good prognosis and the survival stats when I googled them at the beginning sent me into panic mode. I decided then that I didn’t want my onc to give me a prognosis, I had to beleive that all the treatment I was being given was going to be sucessful or what was the point.
It doesn’t stop me panicking that every pain or ache is the cancer coming back and be obsessive in checking my other breast. I need to learn to live with that and I have calmed down a little bit.
To let you know how panicked I was at the beginning after my diagnosis, when I was in hospital once I read my notes that had been left with me whilst waiting for the onc and saw that the consultant had written “is extremely anxious” !!
Donna, I guess when we read up on our particular diagnosis, we’re all looking for good news, but often find bad. I sympathise wholeheartedly as this disease comes with constant changes to which we have to adjust. There are so many varieties of BC and there are so many ways to have a bad prognosis.
My prognosis was excellent with a 93% chance of surviving BC. But I was unlucky have a recurrence. Now my prognosis is pretty grim, so I have a future of horrible, ongoing treatments ahead of me, particularly because the cancer is ER and PR+.
As others have said, if you get through the first 5/10 years after TN BC, you’re more likely to have seen the back of it. The chemotherapy will improve your stats and radiation even more. I’m sure many of us understand your fears. xxxx Jane
Hi
I’m not triple neg but er+. Lobular. On FEC2 then mx, then rads, tam. My choice to have mx after chemo as i felt in a better position to do it that way.
You will get thru’ this and it will become (unfortunately) the new normal. There is so much support on here, both in advise and good news, take it all on board. Don’t google too much or read into things too much. The medical profession tend to talk in shorthand for necessity and what might mean one thing to us as a whole spectrum for them!
Hi Donna
I’m triple neg, mx September 2005, 8/32 nodes involved, reconstruction Jan 2007.
I didn’t have a good prognosis but I’m still NED, now over five years from diagnosis.
I just wanted to give you something positive as when I was first diagnosed I was desperate to find any bit of encouragement I could.
Gayle x
Hi, would like to join in this discussin but i dont know whether i am triple anything or positive anything? All i know its grade 3. thats it. the only negative result (which turns out good does it??) is that its not hormone related so HER2 negative so no herceptin i think is the drug used. its like a diff language and my consultant thinks i ask too many questions and i dont need to worry myself as he says the cancer is cut out (had lumpectomy) and that no further surgery needed. i dreaded him saying needed mx. so im assuming this means margings clear?? I am to have CT scan think because 18 nodes removed and 2 were bad ones?plus need chemo and rads? if chemo is systemic and rads local, why do i need rads cos the chemo will cover my breast as well as rest of my body? no idea what chemo i will need so many diff types but please tell me does anyone go to work - i have been advised not to re immune system and sickness etc,please help me become positve so that i may give postive vibes to others whom need it to?
Hi Donna, like you I’ve just been diagnosed with TN and am attending oncologist today to find out which chemo I’ll be on. I had lumpectomy and sentinel node biopsy with no spread to surrounding tissue or nodes. However my cousin and a close friend both had TN, both had mastectomies and chemo and both have done really well! My cousin has just been signed off on her 5 year visit and my friend almost 2 years past diagnosis. This is helping me greatly and hope it reassures you a wee bit.
Good luck Donna ! We can do it!!
Hi ladies im both er positive and triple negative as i have had two different primaries.
my TNBC was diagnosed about two years ago and when i first read about it online i was terrified… however i have researched and found its not really quite as scary as i first thought it was.
even some recent research saying long term prognosis is slightly better for TNBC ladies.
i was at a breast cancer convention through work earlier this year and there was a lady who was diagnosed with TNBC about 13 years ago… she had a large tumour and nodal involvement but in those days you didnt read the internet so didnt know all the horror stories… she said she was glad she didnt and it was only when years later she decided to volunteer as peer support that she kept getting all the TNBC ladies phoning her and telling her how they were scared they were all gonna die… it was only after that she researched it… that was about 5 years ago.
TNBC has only been around as a separate entity for about 5 prior to this they didnt test for her2 so there are thousands of women walking around who had no idea they were what would be classed as TN these days.
its not all as bad as its made out.
Lulu xx
Hi Silvershar, as I understand it the chemo and the rads work in different ways and if there is any spread at all, even just to adjacent lymph nodes, having both can significantly improve your chances. The rads help to prevent future recurrences in your breast and the chemo kills off (we hope) any cancerous cells that might be floating around elsewhere. That much radiation for your whole body wouldn’t be safe, and then it couldn’t be used for any other cancer you might one day get.
Then there is the question of oestrogen sensitive and herceptin sensitive cancers: doctors tend to put these treatments in positive terms when they’re telling you that you will be taking tablets for years, but you can also take the attitude that if your cancer is not sensitive to these things, it’s an advantage. For a younger woman in particular, not being oestrogen sensitive has advantages. Try to think that the negative results mean you won’t need extra treatments. Talk to your BCN about this.
As for being positive–welcome to the rollercoaster. You’ll find you have positive days and negative ones, and BOTH ARE OK. It’s just that the negative days are the pits to go through. They don’t affect your chances and being positive doesn’t affect your chances, it just helps you to get through the treatment and makes life a little easier.
I’m on sick leave, but I have tried to keep in touch and to keep busy with some work- and professional association related projects to keep from going crazy at home, and I try to get out and see people and continue social activities and hobbies whenever I can.
Best wishes,
Cheryl
Hi Silvershar,
There are lots of threads about people working during chemo and really there is no straightforward answer. Some people manage it and stay well enough to work throughout treatment with minimal days off (as I was able to), many others are just too ill or exhausted to do so, some have jobs such as nursing or teaching where the infection risks are too high for them to consider working, and some others feel they need to stay at home and take care of themselves rather than work even if the SE’s aren’t too bad for them. All of these decisions are fine and you must make the decision that is right for you.
Working was a good decision for me, as I found that when I was home (as for 6 weeks after surgery) I felt a bit sorry for myself and thought about the BC much more than when I was busy working. But I was lucky in that I have a sedentary job, have very supportive colleagues and managers, and the risk was infection was not high.
You will find the decision that is right for you.
Despite your doctor thinking you ‘ask too many questions’, go ahead and ask any questions that you have! You have a right to be well informed and to ask any questions that you have.
Best wishes
Jacqui x
Saw oncologist yesterday. To have 3 xfec aand 3 tax over 18 weeks then rads.Starting Monday. Got my wig, hairdresser has trimmed it
so all set. Coming on here is def helping x x x
Hi Silvershar, just read your post and have come on to tell you its all do-able. I had chemo starting this time last year and radiotherapy in the summer. All finished by July, hair regrowing nicely now, and feel absolutely fantastic!!! mine was Oestrogen positive so on Tamoxifen and hot flushes abound but never mind they are a small price to pay. Mine was grade 3 too and I had lumpectomy and nodes removed. First check mammogram Dec and all was well at that stage. Good luck with it all, thinking of you and hope it goes as well as possible. It seems interminable at your stage but when I look back now I managed it well. Dont be afraid to rest up and ask for practical help,and to admit to feeling wobbly, you WILL get your energy back afterwards I promise. much love, Cassy. xx
Went linedancing and danced all night. Wore my wig to try it out and nobody noticed!I’ve got a big mouth though and told them !Don’t suppose I’ll be doing much linedancing for a while- but you never know!!!Watch this space!