I know what you mean, it is very confusing !! In the end I also decided to go down the Chemo/Radiotherapy route, simply because, as many people have said, it is important to throw everything we can at it.
I had my first session today, I was totally dreading it, but it wasn't as bad as I had expected. (I think this is because I always expect the worst !!).
I hope it goes well for you and you do manage to have some normal life too xx
Thanks for your thoughts all. After a lot of soul searching and an awful lot of research, I'm 99% certain that I'm going to go ahead with the chemo.
It's been a really tough decision - my logical side (and my BCN) are telling me not to go ahead, but my emotional side is telling me that I need to do everything I can to try and ensure this doesn't come back.
I've got my first appointment at the chemo clinic on Monday for the introduction and I think I'll finally commit and sign my consent papers then.
It's strange really, I'd told myself I wasn't going to have it, that it was really small and completely contained by the DCIS, but the more time went on the more I was second guessing myself and the less I was sleeping while the what ifs were going round and round in my head.
Since making the decision on Saturday I've felt calmer and have been sleeping much better.
I just need to brace myself for whats to come now, and hope I can retain some of my normal life while going through it all.
Hiyer, this is SO tough! I didn't have TN but I was also in this borderline position, and had similar conversations to the ones you've had Gracie. Asking this question , about to have chemo or not when you are borderline, will get an array of diverse responses....and that's because the decision is so personal. When I was struggling and confused my BC nurse said to me 'this is a psychological and not a medical decision, so you have to go with what you feel you can rationalise in the future, so go with your heart' . That made sense to me. The medics can't give you a 'yes' or ' no' in either direction, so you have to go with your heart and what you feel you will be most comfortable with in the longer term. Personally, I didn't have chemo, because I would respond worse psychologically if I developed long term side effects. Cancer can recur if you have chemo, and if you don't have chemo, so to be honest you won't ever know if your decision had an effect or not....but....some people like the security of knowing they threw all they could at it. Take out the medical and treatment aspects and just ask yourself what would work best for your peace of mind. X
I would agree with Gracie. Throw everthing you have at it and then if you get reoccurrence you know you did all you could. Chemo may be hard but it will also pick up and kill ofther cells that may have spread. The doctors with all the stats are still ,earning so I would take everthing to killl the cancer. But that's just my opinion.
Good Luck xx
I was diagnosed with tn in 2013 I underwent a mx followed by six rounds of fec-t chemo, recon etc.
Other than chemo putting me through the menopause (I am 52) I've got no lasting side-effects, I'm back at work full time, hair has grown back and life is back to normal.
It is my understanding that whilst TN can be more aggressive than other types of cancer it responds better than most to chemo.
The other thing to remember is other than surgery, chemo & radiotherapy there is nothing else that can be done for TN, there is no heceptin for a year there's no Tamoxifen for 10 years etc
I'm not going to lie, chemo is tough, some people find it harder than others & some people sail through it with little to no se's
You could always try chemo, hopefully you'll be one of the lucky ones with few side-effects but if you're not you could always stop if couldn't bear to continue.
I know a couple of people that stopped after 4 or 5 doses, or switched to weekly (gentler) doses rather than the hard hitting 3 weekly dose.
Personally I wanted to chuck everything at it, so what ever they said I could have, I had.
Take care & best of luck x
I'm stage 2 (so a score of 7).
I've already asked the Oncology consultant what she would recommend if it was her or a family member and she couldn't answer me. She said that any potential benefits versus the potential side effects of chemo (long term as well as short term) was just too close for them to call and in the end it had to be my decision.
I'm trying to look a lot of things up and I'm talking to lot of people but I'm finding it impossible to make the decision at the moment.
I've also got a very close family member, who is a doctor and has done rotations in both Breast Cancer and oncology who's opinion is that if there isn't a clear medical advantage then it's not worth the potential side effects.
I thought that might have swayed me completely but in fact it's just made me even more confused !!
Do you know how aggressive your cancer is? TN is normally more aggressive than other types, but if you have your biopsy report, you will be able to work it out. Look for where it tells you what Grade tumour it is and then look for the figures beside tubules, pleomorphism & mitoses. Each should have a max figure of three. Tot them up. The higher the figure, the more aggressive it is. I have a 3 for each, so the maximum of 9. My consultant didn't tell me I had the most aggressive type there is - I worked it out for myself. It was a sobering moment, I can tell you.
Obviously, my own history is guiding what I say here. Last year, when I had ER/PR positive cancer in the right side, I wasn't offered chemo as it wasn't thought necessary. And that cancer hasn't come back, so perhaps it was the right decision. However, I can't help but wonder whether the TN cancer I now have in my left side was already there last year and whether chemo at that time would have saved me from what I'm having to deal with now. Perhaps I wouldn't have had node involvement which necessitated a clearance and perhaps my survival odds would be a bit better. Perhaps all this is nonsense. This cancer is an aggressive one, so it probably would have been even bigger if it had been there last year.
Anyway, I would go for the chemo, if I was in your shoes. It isn't pleasant, your life will be put on hold, and I really really wouldn't be doing this if I didn't think it was a life saver.
But you aren't me, and you don't have my previous dealings with this illness. Go back to your oncologist and ask them what they would do or advise if they or someone they loved were in your shoes. That's what I have said when a decision has been left to me.
Good luck whatever you decide.
I was diagnosed in September with what they originally thought was DCIS. I had a WLE which was successfull with 7mm clear margins. However in the middle of the DCIS they found I had 4mm of invasive cancer, which had tested triple negative. I then had a sentinel lymph node biopsy which came back negative in all 3 nodes they sampled.
I've just been to my oncologist today to talk through the next step treatment options. She has told me the potential benefit of chemo is 4% and that radiotherapy is about 3% (although that would need to be confirmed by the radiologist).
I asked her if it was her recommendation that I do chemo, and she replied that it was really too close to call and was completely my decision.
I'm now so confused I don't know what to do and have already changed my mind about 5 times today. Fortunately I have time to think and decide what I want to do but at the moment I haven't a clue.
Are there any other ladies out there with similar small TNBC who either have or haven't had chemo? I'm just trying to work through the pros and cons in my head and it would be really helpful to hear if others have had the same thoughts as me.