I am 2.5 years in remission and was oestrogen neg and her2 neg but progesterone positive. I cannot find enough information anywhere about the right treatment. I’ve had chemotherapy and radiotherapy and have been taking Tamoxifen for the past 2 + years.
My question is that if Tamoxifen is given for oestrogen positive what am I taking it for? Am I benefiting from taking it.?
I’m 43 and the side effects can be horrendous at times. I’ve taken Venlafaxin and evening primrose oil at the same time but the flushes have started up again. Any suggestions to help with these?
Is there anybody in or has been in this situation. I’d love to know if anybody can shed any light to these questions.
Hi Icarus and welcome to the BCC forums
In addition to the help and support you will receive here shortly, please feel free to call our helpliners to talk through your queries, lines are open 9-5 weekdays and 10-2 Saturdays on 0808 800 6000
We also have an ‘Ask the nurse’ email service if you prefer to send your questions in, you can read more about this here:
Take care
Lucy
You can also try clonidine or citalopram
Hi Icarus
As if it wasn’t bad enough being dx, some of us find ourselves in rare sub-type groups and er- pr+ is one of them! I was dx in 2006 er- pr+ (89%) and Her2+ I drove myself crazy looking for information about an er- pr+ dx but if you have been researching too recently, it sounds like not much has moved on with this since I was looking in 2006! Onc didn’t shed much light on it either. Anything I have read always says tamoxifen will be prescribed for er+ and/or pr+ if premen. Benefits, well I’m still here, which is the greatest benefit, but is that due to herceptin, chemo, rads or a combination of them all? Who knows? I finished tamoxifen one year ago and if I am being honest, not sure whether much has changed since coming off it. That probably doesn’t help does it but my point being, and I can only speak for myself here, I am not sure whether any side effects I had were caused by tamoxifen or just normal bodily changes. Am I glad I stayed on tamoxifen for 5 years? Wouldn’t have changed a thing because sometimes it is not just the physical changes that can cause problems. For me mentally by taking it I knew I was having every treatment available to me. I had and still have young children so I would have taken anything to be honest.
Not sure if this helps but I hope you can find some way to relieve your side effects. If you do manage to find any information about er- pr+ it would be great if you could share it on the forum because there are a handful of us about with this dx.
Take care. Love xxx
Hi Icarus, I’m also er-/pr+ and on tamoxifen and have seen the same sort of thing saying it’s for er+. If I’m honest I just go with what my onc says and take the pills. I don’t have horrific SEs (touch wood!) so I’m just going to keep on popping the pills! Are you awawre of the group on Facebook for younger women with BC where this sort of thing is discussed? It’s a fab group and a great alternate source of info and experience - if you’re interested the link is facebook.com/ManchesterYoungerWomensBreastCancerNetwork?book…
If you send a message letting them know you’re a younger lady (pre screening age) with a breast cancer diagnosis and that you heard about them here they’ll add you into the private chat group.
May be see you there, if not I hope you get some answers that can help you make your mind up 
Hi I am also in the group ER neg PR pos, I really wish I could find more information about it. I have just started radiotherapy, and then moving on to the hormone treatment. I don’t know exactly what I want to find, maybe some reassurance? Just increasingly frustrated that my nurse and oncologist can tell me so little about it.
Jo