My beautiful mum found out she had b/c about 8 wks ago. She had a 6cm grade three lump removed and 1/8 nodes were positive. I hadn’t looked into it too much until now but it has just sunk in that she is triple negative (know she has negative to the hormone tests but just hadn’t realized what that meant til now). My heart is breaking because I dont think she realises what this means and I have no idea what to do. she has to go in in a few weeks for full clearance. I have been doing OKish up until now but now I have realised this I can hardly see how to go to work or look after my son let alone speak to my mum.
Hi there - so so sorry to hear about your Mum you are obviously very distressed but well done for posting on here as you will get good advice and support to help you through this. I am not triple negative so I don’t want to comment but feel confident someone will be along soon who is and understands it better than myself. Some people don’t want or need to know all the details of their particular diagnosis which is hard for those around them who know and understand what it implies. You will find the strength to carry on being there for your Mum and your Son from somewhere and they both will be grateful for your support. Please do let us know how you are all doing, take care.
Clarabelle xx
Hi northern light.
I am afraid i don’t know much either about your mums situation but my heart goes out to you, your mum and your little boy. Please God, you will get some excellent advice and support from this site as well as from the team your mum is with. my breast care nurse has offered advice and support to everyone in my family and even to friends. Have you been able to speak to your mums nurse?
please do keep in touch as most women using this site has said it has been a life line and a constant source of support.
don’t forget to take care of you during the coming months.
Much love
Ioc
Hi northenlight
Your mum is very lucky to have you. I have three daughters and quite honestly worrying about them has been the worst part of my whole bc experience - I’m sure that your mum feels the same way.
Like your mum I am triple negative and have just finished my chemo and radiography. I feel great. My op and treatment is over and I am getting on with my life. I’m sure your mum will do exactly the same and with a loving daughter like you beside her will have lots of love and support. Try and stay positive and take each day as it comes. If you read some of the other posts on this site you will find there are some very inspiring stories.
Lots of love Anne x
Thank you so so much for your kind replies, am sitting here trying not to soak the keyboard. Firstly I want to send you all positive thoughts and best wishes for your own recovery.
I have left a message for Mums nurse so I hope she will call me back today. I think I have been doing OK so far and taken each bit of bad news on board but last night was just too much. I know everyone thinks this about their Mum but she truly is one of the most giving and selfless people on the planet.
My main concern is that she had a mx about three weeks ago and now has to wait another three weeks until her total lymph clearance and then of course a delay until chemo. It all seems to take so long. I dont think she has realised or looked into what her hormone neg results mean and I have no intention of telling her but I just hope that if she knew she wouldnt alter her treatment choices.
Anyway I am feeling a bit more calm today and of course I will be for her. So glad I posted last night and I thank you again so much for replying to me.
with love, NL x
Hi NL,
Sorry you have had to join ‘us’ but you will get a lot of support and positive advice from this site.
Like Anne, I too am triple negative. I have just completed my treatment and getting on with my life. I even have some hair growing back, not the colour I would like but hey it’s hair!! As Anne said there are so many inspirational stories on this site.
The waiting is the worst, and I do feel it is worse for family looking on, I know my family felt they wanted to do something for me, being there for mum and being positive is supporting her.
My daughter is travelling in Australia, she postponed her trip at the end of last year, she said she was saving more money, but I knew she waited until my chemo was done. I was more than happy to see her go, the chance of a lifetime,and I know we will have great times when she returns. I’m sure your mum would want you to focus on your little boy and am sure he will, unknowingly, help her through this too.
Try talking to your mums BC nurse, when I discovered I was triple negative mine was my inspiration, along with ladies on this site. Please feel free to PM me if you would like to.
Take good care of yourself
Love
Brenda xxxx
Hi NL
Good to hear you sounding positive. I know exactly what you mean about the waiting it seems such a slow process and it does feel better when you know exactly what the treatment plan is. Like your mum I was not aware of being ‘triple negative’ until my treatment was well underway but I would not have changed it
I hope the bc nurse gets back to you soon and if not get back to her and keep posting. There are some very knowledgeable women on the site who are mines of information and there is always someone who can give advice and support.
It’s great that your daughter is travelling Brenda, what a wonderful experience you must be so proud. I know I just want my girls to get on with their lives and have fun. Like you my hair is growing back and although I look a bit like a baby orangutan as you say - hey its hair.
Take care Anne xx
Just a quick update, I spoke to the BCN this afternoon who was really great. Of course the minute I started speaking I dissolved into tears but she was really patient. She confirmed the positive that there was only one node (which is not too bad given the size, grade, 3neg) and that there was no evidence of vascular invasion. She also clarified that the actually lump (whilst still big) was only 4.something, it was the ductal stuff which pushed the overall area to 6cm. I explained my concerns about the disparity between Mums understanding and mine and about the delays. She says they may well offer scans before chemo which I guess could help her evaluate her options (though this may depend on if the find more affected nodes - lets hope not).
Thank you all again, so so much. Anne and Brenda- I’m sure my mum would say the same about not wanting to disrupt my (our family) life but its all I can do to steel myself not to clamp myself to her - its so childish I know (I’m 30!)! I’m sure as I do all your families love you so much, its a double edged sword being acre for by so many people. It means there is a lot of heartache when someone is ill.
Waffle over - my love and best wishes to you all, NL x
Hi NL, I too was diagnosed triple neg with one positive node,and I had an awful lot of vascular invasion as well! I had a lumpectomy with aux clearance,8 lots of chemo and 6wks of rads,and am still very much here to tell the tale 5+yrs later. Triple neg tumours respond very well to chemo and there are many people like me around to prove it!
Love to you and Mam,
Josie xx
Wow thats so positive to hear - thank you for giving me so more hope Josie. I really appreciate it x
hello to you
it doesn’t mean that because she is not responsive to hormone treatment that she can’t have others she can and my advice to you is read read and more reading on what she can have and can’t have in the way of treatment, also support for her and yourself. The first time i saw the surgeon with my sister he said it was better if you had a certain ammount of knowledge about TN BC so with those words in mind i have researched and read as much as i can about it. I bought a note book and wrote notes so that when we went to the oncologist i was prepared to ask questions where as my sister wasn’t
as it is a lot to take on board when all you can think about is your self and how your going to get well again, her mind wasn’t taking it all in and she kept saying what did he say? so in a way i am glad that i read as much as i can about TN BC the effects and treatments even though sometimes i am scared also. You will find your inner strength and be a great asset to your mother, good luck and best wishes to you all and god bless. x
maryelle.
Hi NL
I too am triple negative,lumpectomy, 15mm tumour with 12 nodes removed and 11 clear. 3 FEC and 3 TAX, 15 rads with 5 boosters and finished all treatmetn last September.
I too was really frightened at the thought of having triple neg as I wanted tamoxifen and herceptin - infact I would have had anything given! Life does go on though - I went back to work 3 weeks after rads ended and here I am 8 months down the line (from treatment end)and haven’t had a single day off sick since!
Your mum has lots of support all around her from you, this website (I personally couldn’t have got through it without it) chemo nurses, BC nurses, family and friends - I’m sure she will be ok.
anita
hi all just been for first consultation with oncl, and i cannot have any drugs after 6 lots of chemo and 5 weeks of rads it has freaked me out as you sort of feel that the drugs after are your safety net, he didnt actually sat tn but as it is not hormone res i suppose thats what it means can anyone give me some words of wisdom thanks
julie x
Hi NL
TN does seem scary but I can tell you that I am over 12yrs from my 1st TN dx with 6+ nodes and almost 3 yrs out from a 2nd primary TN dx with 29+ nodes.
So as you can see even though they paint a bad picture for TN’s there is definitely life after Tx.
Waiting for tx options is always the hardest, once you know what is going to happen it gets easier.
Take care.
I too am triple neg and finished treatment 2 yrs ago.I was scared stiff at first but there are positives in being triple neg.It responds better to chemo than others;if you can get to 8 yrs NED it is very unlikely to recur unlike +ve tumours.It is unusual for older women to be tn but if they are they are especially likely to benefit from chemo.The Herceptin and hormone treatments dont always work and cause side effects themselves.Her2+ tumours tend to be very aggressive and herceptin can bring them in line with tn.The real problem with tn is that it is more likely to recur in first 2/3 years and if it does the secondaries are very hard to treat[but no secondaries are curable].Try to be strong for your mum and hopefully all will be well.
Love Valx
Hi Northern Light,
Please don’t be so worried. I finished treatment for my second grade 3 triple negative breast cancer August 2007; after having my first in 2002. I’m now in perfect health after chemo, surgery and 30 sessions of radio both time. Triple Negative responds very well to chemo & I was at a conferance in Texas in February which was upbeat about triple negative. So please be reassured & best wishes to your mum.
Hi there
There is quite a lot of publicity about triple negative breast cancer right now and I thinks some of it leads to very confusing messages.
‘Triple negative’ breast cancer isn’t one kind of breast cancer but likely to be several…triple negative is just a term to describe what the cancer doesn’t have (hormone receptors or receptors for her2+) It is not necssarily more aggessive than other kinds of breast cancer.
Triple negative breast cancer can’t be treated with hormonal treatments such as tamoxifen, nor with herceptin. When these drugs work they are very effective but they don’t always work.
With triple negative breast cancer chemotherpay is the mian tretament option. Again some triple negative breast cancers respond well to chemo and som don’t.
In terms of recurrence, triple negative bc is statisically more likely to recur in the first 2-3 years compared with other breast cancer all things being equal (eg, vascular invasion, node involvement.
Really hope your mum responds well to treatment but please don’t think triple negative bc is automatically something more terrible than other kinds of breast cancer. Its not.
Jane
Thank you all again for you positive and balanced comments. After my initial horror I’m starting to feel better about things. The next big step will be to see if any more lymph nodes are affected after she has her total clearance. I just want to hurry and get to the “safety” island of chemo, but as others have said any waiting for treatment is hard. Thanks again for all your generous encouragement. x