Well, after the lump was removed from my breast I got the news that it is a triple negative breast cancer, which means it is not hormone receptive. This rules out all the hormone therapies for me, and also, from my reading, it appears to make the prognosis worse, at least for the first few years post diagnosis. Great. There must be others out there who have TNBC, I'd love to hear your stories. I start chemo this week (supposedly, although I haven't got a time yet), three times of FEC, each 21 days apart, followed by 9 weeks of Paclitaxel. Bought the wig and some turbans at the weekend, have stopped drinking alcohol (aaagh), trying to be healthy. Hope it works! Wouldn't it be good if only the hair you didn't want fell out?

Just read your latest post. I am triple negative too, so ask any questions you want and if I can answer them I will. Hold the thought that your nodes were all clear, and you are starting from there. So were mine, which was a vast relief, and some of our lovely friends were not so lucky. None of us want to be here, but it is what it is, and we slip into survival mode and see it through. The stories of the TNBC group are worth reading - there are quite a number of us. I have been drinking Lite ginger beer in a wine glass - not too bad actually. All the best - Michelle x

Hi Michelle, I will check out the TNBC group, thanks for the advice. I think I should stop reading academic articles on the web as they are depressing, but something is driving me to do it. I'm trying to get some control, through knowledge, but it isn't working well. I agree, it was a great relief when the nodes and then the scans were clear, and we are very lucky there. Are you going to a geneticist? I've been referred because of the TNBC and a family hisory of BC and ovarian cancer - my mother's two sisters and my grandma (Mum's Mum). Might go get a pomegranate juice with sparkling mineral water. I'll try your trick with the wine glass. One of my work colleagues told me that one today, too. Best wishes Mary

I have TNBC too. There are about 60 of us in the TNBC group so hop over and have a read. This Thursday is my last chemo, then a break then radiation. I had a lumpectomy/wide excision. 4 x EC, 12 x Taxol, 20 radiation. My oncologist will be running a series of tests post radiation. His thought process has always been to deal with the treatment in steps that both the mind and body can deal with. You are quite right when you say there is alot of information out there, and it is overwhelming in the first few weeks. However there are some great sites out there (not unlike this one) that provide information that is easy to understand and useful. I plowed through them in the first couple of months and then I wittled back to a couple. The most important thing is that they helped me to ask the questions about my treatment etc. Michelle is rights when she says ask anything. Someone on here has usually experienced something similar. Be gentle on yourself. Take care

Nice to hear from you, Serenity11. I've joined TNBC group and it is really good to be able to read all the posts from others with TNBC. I find the different chemo interesting, and will definitely be asking the oncologist why she's decided what she has, which is FEC100 x 3 then Paclitaxel x 9. I'm also going to ask about the "poor prognosis" I read about in every damn article - as my surgeon didn't indicate it was all that poor ie 82% of being alive and well at 5 years is what he said and it doesnt seem so bad. I know that other BC women have better odds than that but still, poor seems a bit harsh. I guess some would say why bother with semantics but for me I don't like to think my prognosis is poor. I just pictured lots of women sitting in their homes worrying about different issues, just like me sitting here writing this. We all have stuff to worry about and process in our own ways but it sure is nice to be able to put it down in a blog will be read by someone who understands.

triple Negative BC | BCNA Online Network

15 Replies

Mary993
Member
13 years ago
Hi Deb So good to hear you are in good health, gives us all hope for a healthy future. Great analogy about the balloon, even though I'm just at the start of treatment I can relate to that feeling. Mary
dmed
Member
13 years ago
Good to hear from you. I like that feeling about the balloon great way to put how we feel. This just makes your antennae go up when feel something not right. Trying to exercise more but finding hard while doing radiation.. Hard to come to terms with sometimes. Take care also.
dmed
Member
13 years ago
Good to hear from you. I like that feeling about the balloon great way to put how we feel. This just makes your antennae go up when feel something not right. Trying to exercise more but finding hard while doing radiation.. Hard to come to terms with sometimes. Take care also.
dmed
Member
13 years ago
Good to hear from you. I like that feeling about the balloon great way to put how we feel. This just makes your antennae go up when feel something not right. Trying to exercise more but finding hard while doing radiation.. Hard to come to terms with sometimes. Take care also.
Deb_236
Member
13 years ago
Hi, I was tripple negative also and am now 2 years on and in good health. Had a mastecomy and reconstruction last year. It certainly has changed my focus on life, make sure I enjoy each day. I exercise every day it not only keeps my weight down but makes me feel good and gives me the feeling that I am doing something to reduce the risk of recurrance. I still get scared some days especially when I reflect on how good life is and I feel like a little kid holding a big balloon and someone is going to pop it. Have found a good councillor and those times are getting fewer. Wish you all well take care
dmed
Member
13 years ago
Glad your feeling better. Seems to be we have our days. Found lots of things here very helpful as well as a local breast support group. Also accessing the help through your gp very good I spoke to a psychologist and have found helped me to relax and deal with things. Relaxation tapes very good. I got a bit teary at times but by this site you know your not alone . All the best.
Mary993
Member
13 years ago
I'll google for the site you mention. I'm feeling a bit better now as I've just had my first chemo and so far not too bad. I think I've come out of the bad mental patch, for the moment. Such a roller coaster, I find the lows hard to deal with as I'm usually a positive type. But yes, this site and especially the TNBC group is helpful. Thank goodness we have each other to talk to and learn from.
serenity11
Member
13 years ago
In my case my treatment reflects the size, grade and agressiveness of my tumour. I understand that these are the indicators that guide our medical teams to our treatment, thus there are variations. As for prognosis, I think you should read into the TNBC statistics that is quite uncommon and therefore the statistics are compiled from a very small sample group. Therefore they will be skewed on recurrence rates. I also understand that there is a cut off of 5 years for the compiling of most statistics. Once you are past the 5 years you are considered well. So we dont actually see a true survivor picture. My Oncologist has told me we are aiming for 30 years. I'll work with him on that one. Dont let numbers rule your life :)

Take care and let us know how you are travelling.
serenity11
Member
13 years ago
In my case my treatment reflects the size, grade and agressiveness of my tumour. I understand that these are the indicators that guide our medical teams to our treatment, thus there are variations. As for prognosis, I think you should read into the TNBC statistics that is quite uncommon and therefore the statistics are compiled from a very small sample group. Therefore they will be skewed on recurrence rates. I also understand that there is a cut off of 5 years for the compiling of most statistics. Once you are past the 5 years you are considered well. So we dont actually see a true survivor picture. My Oncologist has told me we are aiming for 30 years. I'll work with him on that one. Dont let numbers rule your life :)

Take care and let us know how you are travelling.
Mary993
Member
13 years ago
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