hello again anyone double negative ???
im er and her2 negative dose anyone know anythink about it ???
all i can find when i look it up is triple negative so any body that knows anythink about it could tell me would be very helpful thank you.
Hi I’m double negative also haven’t been able to find any information on it but don’t think Th drugs at Th end are any use. My Onc said he wasn’t sure wether they wud b suitable. Hope someone else can enlighten us rozita xxx
Are you pr+…? I think it is really rare to just be pr+ but those patients also get tamoxifen… If you are pr- then that means you are triple negative…
Theresa x
all i have been told is im er and her2 negative grade 3 stage 2 invasive carcinoma and have had genetics referral that i have done and when all treatment is over i maybe put on react trial ??? so if anyone knows anythink about this would be very helpful
I could be wrong, but I think the react trial is for triple negative ladies.
I would check with your bcn with regards to your pr status.
Hxx
i think i will i hate not knowing 
just bumping this up need to know if anyone knows anythink ?
Sorry…tried to post last night again, but obv not worked!
If you look under the Triple Negative heading down the left hand side,you’ll find a thread titled REACT trial. You might get some info on there. If not you could PM the ladies who have posted?
Hope this helps
hxx
Finty that is a useful link-I will ask my onc about numbers when I see him in may.I was just told that I was triple neg with no further information given.
Thanks
Valx
On the back of the link -
It was asked at the Glasgow YWF what the cut off is for BC being classed as TN. The Breast Consultant said 2/8 & lower was negative.
I was 3/8 at biopsy, but this reduced to 2/8 after mx, but my onc was still happy for me to try Tamoxifen if I wanted to. My thinking is if I was 8/8 then it should work 100%, so surely it could have a 25% impact on the growth of my 2/8??
My oncologist also said that some don’t treat anything under 4/8 with hormone therapy!! Strange how there isn’t even a consistency with this!
Hxx
I was originally treated in Shropshire, my onc there said I was Pr+ but Er- and HER2-. I was only “slightly” Pr+ but he put me on Arimidex anyway. I’ve had absolutely no problems with it, and have now been on it for a little over a year. I have since moved to Torbay, and my new onc is querying why I am on Arimidex as I am not Er+.
I am trying to find out more about this. Some sites seem to suggest that the Er-/Pr+ combination doesn’t exist, it’s a mistake in the test - most likely that you are slightly Er+. Others seem to say that it’s a genuine but rare variant, and could either evolve out of or into Er+. In either case, there does seem to be some minor advantage in taking Arimidex (or presumably Tamoxifen if younger.)
I know this stuff’s quite expensive, but I don’t care if it would only have a 0.001% improvement in survival, for me if I’m that 0.001% that’s 100%. So I’m getting ready to fight my corner if necessary - if anyone has any more information on this I would be most grateful.
HI SUZANNE,IM ER NEG PR POS HER2 NEG AND IM ONLY SLIGHTLY PR POS,IVE BEEN ON TOMOXAFEN FOR A YEAR MY ONC SAID IT WILL GIVE ME SLIGHT PROTECTION,I WOULD INSIST YOU CARRY ON TAKIN IT XX
Hi Susanne
I am another ER- but PR+ I was highly PR+ with a score of 89%. I am also HER2+ I was DX in May 2006. I have been on tamoxifen since May 2007. Apparently about 5% of women are given a dx of ER- PR+ There really isn’t much information out there about this type of dx, believe me I have looked! I will be coming up to my 5 year check-up in May and not sure whether onc will keep me on tamoxifen. I will be almost 45 then and at the moment still have periods, although they are very irregular. Since I have been using this forum, going back to 2006, there has only ever been a handful of us with ER- PR+ dx.
Drabble - good to hear from you and hope you are doing ok. I would rather have slight protection than no protection any day! Take care.
Love xxxx
hi swissmiss,im fine thanks good to here your comin up to five years really pleased for you,wishin you a merry xmas and happy 2011 xx
Thanks for your comments, ladies. I am writing to my GP explaining why I want to continue the Arimidex.
Hi i have just had it confirmed that i am HER2- ER- and very slightly PR+. 3/8 to be precise. ONC suggested i will take hormone therapy following chemo and radio but explained that it was debatable what if any effect it would have and that if i had bad side effects that they may just discontinue it. Said also that this is a borderline TN diagnosis. XX
Hi ween a, wow you are now the third person this week on this forum with a ER-PR+ dx - I have just posted a reply to kfl on another thread about this. It is a personal decision whether to take hormone therapy or not. For me personally I would rather take it than not. Please keep us posted and hope all goes as well as it can with the rest of your treatment. Take care. Love xxx
Hi Weena
I am the same double negative and 30% PR positive, had chemo & 1st Rads today, got given a leaflet on Tamoxifen yesterday and a prescription for it, to start taking after Rads finished, I have asked to speak to ONC to discuss, advised it will be next week sometime, I will let you know what is said, I was really worried about the side effects of Tamoxifen but Swissmiss (Thank You) and a few other people have started to put my mind at ease a little, please let me know how you go on xxx