Triple negative information

[bushy]

Hi Jrip, I am also triple negative. I finished chemo in June, right mastectomy with diep reconstruction in August, and finished radiotherapy 3rd November. So that's active treatment all done, but I can't stop worrying about it coming back 😞

I go back to work next week on a phased return, so things are sort of getting back to normal. But I haven't told anyone about how anxious I feel about recurrence. I wish I could just forget about it for a while. Maybe it will get easier as time passes x

[Jrip]

Hi there! 4 years is great.....don't they say that after 3 years chance of it coming back drops greatly...I've also heard that once you pass 7 years it's highly unlikely to come back but also that it so unpredictable.......I've just finished rads in  November.....had chemo first then a lumpectomy followed by the rads.   My mind is the problem at the moment....im just terrified of it coming back 😞 

[bernadetteh]

Hi Ladies,

This is my third BC. Two primary's and this is a recurrence. My first BC was in 2002 in my right breast, second 2007 in my left Breast. Recurrence after 7 years - again grade 3 TN. I had a Double Mastectomy in Sept and just started chemo for the third time. Best Wishes to you all. X

[Teej]

It's great to hear about TN ladies doing so well! Can I ask did any of you change lifestyle at all - eg diet/exercise etc?

[Jill1969]

Hey ladies, I was diagnosed in July, had wide local excision, one sentinel node positive, so went back and had clearance! It was grade 3 and triple negative. I have been wondering, if no mets by the end of next year, whether double mastectomy is a better option? You hear of so many with local recurrence or new Breast cancer. What r your thoughts guys? I know it seems radical, it's just triple negatives don't get the protection that others who have he reception or tamoxifen ?

[Kathy]

Thanks for the info. I've read the abstract of the paper. It sounds encouraging. I know that triple neg not too good and of course I had to have grade 3. However, I am well and positive. I have a great family and supportive friends.
Kathy x

[Guest user]

Hi,
I was dx oct 1991 with grade 3 stage 3 er-neg pr-neg bc it seems they did not test for herstatus then. I was thene re-dx end oct 2007 with triple neg onc said same as before and although did not test in 1991 hosp still kept samples for as long as 20yrs and said both bc were being treated as same, they also said they were on the fence regarding recurrance or new primary but decided on new primary as so long in between, i also had spread to lymph nodes both times and had lumpectomy chemo and rads first time and mast recon full aux clearance and chemo, no rads this time. In 1991 i didn,t realise what it was all about as they said it was an aggresive tumour and i just left it at that, however over the yrs i have become much more clued up on bc and reaslise we are in a minority group with not a lot of research going on for us. The bc consultant did say that we did respond to chemo more readily so i,m clinging on to that and realise that it does not matter what type you have it is a dreadful position to be in and in a lot of ways it is just luck with how you respond to treatment etc, but when i had got to about 12yrs post i thought i might have finally beaten it and get on with my life. How wrong was i, you never know when it is going to come back eitheras a recurrance, new primary or mets you just have to take each day as it is. Keep well
Love Reneexx

[josyemarie]

Hi Kathy,
I'm 5yrs without a recurrence. My tumour was grade 3 triple neg.with spread to my lymph nodes.I,too try to convince myself that seccondaries would have appeared by now but theres still part of me that thinks they are lurking around the corner waiting!! I'm 10yrs older than you and cant beleave that I've had my 50th birthday. I'm still in awe that I've made it this far! Thanks Jane for the web address.I think I'll have a look at it as well.

Josie x

[Guest user]

Hi Kathy

Have been trying to remember where I first saw this information. Did a google and found this article which is about one piece of research...there are others.

http://clincancerres.aacrjournals.org/cgi/content/abstract/13/15/4429

Going 4 years is pretty good with triple negative cancer but of course you will continue to worry.

very best wishes

Jane

[Kathy]

Hi
I have read a few comments throughout the forums about recurrence being rare after 8 years in triple neg. patients. I was diagnosed 4 years ago. Had partial mastectomy, 6 FEC and radio. No symptoms since - except those in my head!! I haven't let go yet and sometimes it just catches me. I am more tired than I was before but am also less fit and 4 years older (I'm only 40 though) so maybe this has nothing to do with the treatment.
I'm a scientist and a geek. Does anyone know where I can read the research results or orginal papers about the triple neg 8 year thing? My tumour was grade 3 and I try to convince myself that secondaries would have appeared by now if they were coming.

Kathy