Just wondered if anyone else out there who was dx with lobular cancer and also told they are PR+ & HER2 positive. From all my research on internet apparently it is virtually unheard of to have lobular cancer and to be HER2 positive.
Look forward to others comments.
Starfish x
Hi.
I’m lobular, 100% Pr positive, 80% Er positive and HER2 positive.
Not ER/PR+ but have lobular and her2 pos
Hi All
Interesting, seems there are a minority of us!
Starfish xxx
Have been doing a bit of research on web and found that in late 2006 a new gene FGFR1 I think it is was identified in lobular cancers. Does anyone know about it? Does anyone know how this relates if you are HER2 as well.
I was diagnosed in Feb 08 and just started chemo. 4FEC/4TAX. 6/21 nodes. Is there anyone past treatment or know of anyone. I feel my diagnosis is not good. Have not been given any prognosis by hospital other than told 6/21 nodes is not good. Also internet seems to say lobular is harder to treat. Seems - as in my case - it is picked up later and more advanced. I feel let down by screening programme as apparently ok in August 2006 & 2 large tumours by Dec 07 when I spotted inverted nipple.
Love to have reassurance from others that there may be some hope of NED for lobular and HER2 sufferers.
I had DCIS with lobular features and am PR neg ER neg and HER2+++ diagnosed 2007 when 2006 mammo was clear.
I had lymph nodes removed in 1997 when I was PR+ HER2 neg.
Hi Starfish,
I am not much good for giving reassurance re NED for lobular & her+++ but i have been around for 18 years since my first dx in 1990 :). I have had 3 primary dx and one recurrence, then extensive bone mets since 2002 and would say the treatments ain’t a lot of fun but life’s not bad. Bear in mind that herceptin hasn’t been around that long either. I reckon if it had been way back then I probably wouldn’t have gone through all that I have. I have never wanted to know what my prognosis is - I think had I asked some years ago it wouldnt have been very hopeful at all. I think in most cases they just cannot be accurate - we are all so different.
dawnhc
Hi Starfish,I was lobular,er+,pr+ and her2+++…diagnosed may 06 aged 44…had chemo,rads and am on tamoxifen,was going to have 12 months of herceptin but couldnt due to poss risk to heart…had a few muga scans to see if it could go ahead but it was too risky…bloomin eck and gulp gulp I thought,her+++ and no herceptin BUT have been fine and am still NED and going strong,I agree there doesnt seem to be many of us about with triple positive lobular…(seen it called that somewhere cant recall).but hope the comments by pals here can reassure you as best possible…onwards and upwards,best of luck to you,take care… D…x
ive had lobular ,diognosed in 2006.had mastectomy ,chemo and rads also 12 of the 16 lymph nodes were posetive ,but im still here ,have a few spots on liver that are not causing any bother so there are some of us that are alive and kicking !!! take care lynn x
hi, what is NED? Sorry to be ignorant!
Not ignorant at all Irina - even though I have had breast cancer for 18 years now, I didn’t know what NED was until I read these forums. Then I didnt discover what it was until someone like you asked the question!! It is No Evidence of Disease.
Dawn
thanks for that, I’ll listen out for it, sounds good!