My onc said today its unusual to be Her2+ AND er+ …so ladies etc…how many of us are there and are there issues that affect us specifically?
Looking forward to your answers!
I am!
My surgeon was also quite excited by it and said only 3-4% of people are both.
Don’t know if there are any issues that affect us specifically…are there?
Think I am,
I will be having herceptin and tamoxifen
Xxx
Yes thats what mine said today!..and apparently we are often PR-
but thats often dismissed…but could be important. My onc today said that he wasn’t sure whether the chemo, herceptin or tamoxifen worked really well with this type but threw the book at it to cover all bases…so I for one would like to know more…I know its aggressive but to be honest he was totally non committal about anything…said I had to weigh up my options and do what I thought best…which as a person coming to the end of their herceptin and left with the horrid tamoxifen is a rather interesting predicament. He thinks tamoxifen is best option for me as thinks I will have worse joint pain on other er suppressants…but he will not guarentee its effectiveness…
He said taking or using any ‘complimentary’ medicine was fine by him, said progesterone creams etc may make body produce more oestrogen but that they (the experts) had no idea if it would…So it left me more confuddled than ever…coz if he has no idea how am I supposed to know?
…Oh and my daughter is also Her2+ er+
lostinfrance - Hi I’m the same Her2+ and ER+ PR-, my onc did not mention anything about it being unusual and I did’nt think it was that unusual (I go on the american breast cancer site where everybodys dx including the her2+ etc info is at the bottom of each persons post so you can see what dx everyone has, it seems loads of woman are the same as us having the both) I am now on herceptin/tamoxifen combo, something is working as since june my mets on my lungs have been stable and shrunk with the chemo to tiny, personally I feel it is the herceptin rather than the tamoxifen as I have not been the tami for that long about 2 months. Due to my mets I will have herceptin for the rest of my life or for as long as it works. Dont know of any issues that effect us having the both but will ask next time I am at the oncs cause I would like to know.
Love and light to you all
Sarahlousie xxx
Hi Ladies,
Yep i am also been diagnose the same, having MX on 1st Dec
dont know when i will be starting treatment sooner the better hopefully soon after op.
Keep pecker up all of you Pat xx
me too.
Julie x
I was Her2 and Er too.
Tracy
I am HER2 and ER positive. I am on herceptin and tamoxifen combo. I have been on this for about 3 years.
Apparently it also tends to be mainly younger women who are HER2+ and ER+. I was 33 at diagnosis. I also had a very large tumour which seemed to come from nowhere - and my oncy guessed I was HER2+ because of this. I guess that’s what they mean when they talk about it being aggressive. I hate that word! Too scary.
Hi Lostinfrance
I am Her2+ and PR+ but ER-
This apparently is very unusual but I have been on tamoxifen for almost 5 years for the PR+.
Love xxx
Thanks for all the replies guys…interesting that it seems a younger womans type…
Anyone seen data showing that tamoxifen might not be effective in those who are Her2+ and er+…some was recently bought to my attention…
Anyone on Zoladex?
Keep the info coming…will be of interest to lots of people
xxxxxx
Hi LIF, I’m HER 2 + and ER +. They didn’t test for pr cos they said there is no treatment for it. Cool, so if a pr wonder drug is released they won’t know if I need it or not.
I knew that only 20% are HER + but didn’t know the ER + combo was rare. As for being aggressive, I thought the herceptin took us back to average risk of those who have had bc.
My onc said there was nothing safe to take for flushes with ER +. Even the aromatherapy lady at the hospital had a list of oils she wasn’t allowed to use on ER + people.
LIF, do u think it’s worth waiting to see if your joints are better once you have finished Herceptin? Tamoxifen might not be the problem - or it could be both together. Let us know what you do.
I am 58 and also both but on Herceptin and Arimidex due to being a post menopause woman, I also meet up with a lady every 3 weeks who is also the same no one has mentioned that we are unusual? I am sticking with the fact that at least we have two weapons in our armoury to fight this thing!!!
Both here too. 44 at dx. No-one ever said to me it was unusual.
Hi lostinfrance,
I was both Her2+ and 7/8 for ER/PR. I had no idea either that this was unusual. I’m now on Letrozole as my chemo put me into menopause, but as my ovaries started to work again and my oestrogen levels were high, we decided to remove my ovaries to keep me post menopausal. By the way I’m 42 and was 40 at DX.
Paula x
Hi lost in france
I am Her2 + and Er+ and was told by my onc that it’s not a common form of bc.
I’m now on Letrozole/Zoladex and Pamidronate. Taken off tamoxifen when diagnosed with secs last year. Had rads for hip and pelvic pain last week and now going for ct and bone scan next week as onc seems to think letrozole now stopped being effective.
Had 18 treatments of herceptin in 2009 and may be going back on it permanently if there is progression. They have held off putting me on Herceptin permanently in the hope that the other treatments would keep me stable, which may still be the case - fingers and everything else crossed!!
Liz x
I am Her2+ and ER+ and had no idea that it was unusual. I wouldn’t say I was younger either - 54. This combination is from my regional recurrence by the way - my original tumour was ER+ and Her2-.
Mo
its not any more unusual than her2+ ER-… the documented rates for each is between 5-15%.
Lx
Hi,
Another Her2+ and er+ here. I’m having herceptin, tamoxifen and zoladex (because periods returned)