ER & PR negative - what does that mean?

Hi Ladies,

maybe you could help…just had my WLE and a few nodes removed, wating to go back on 23rd for them to tell me if its spread. I have grade 3 invasive - ands its a rare type of cancer something called a medullary…?

Anyhow - before i went in for my op i was speaking to the nurse and she said I was ER negative so wouldnt be able to take Tamoxifen and I was almost certainlt PR negative and she didnt have the HER2 results back yet.

I read on some of the forums when people say they are HER2 negative(thank god) - I thought this was a wonder drug, why would ladies say thankgod they dont have to take it?

Also getting back to me what does it mean if I am ER- and PR- is this bad?

I know i sound dense sorry just not sure bout it all…


Hi Lynne

Your cancer is what is called a ‘triple negative’ - that means that basically, your tumour is not responsive to the female hormones, nor will it be responsive to Herceptin (incidentally only about 20-30% of breast cancers are responsive to Herceptin, so don’t worry about not being ‘eligible’ for it). Also the drug Tamoxifen, or any of the other drugs that supress oestrogen, is not suitable for you. This means that they may offer you chemotherapy more readily than if your bc was responsive to oestrogen as there are less treatment options with us ‘triple negatives’. For now, I would try not to worry about it too much, see what the histology says and take it from there.

AS for it being ‘medullary’, bc’s do come in different types, the majority are ‘ductal’ in origin, you have a slightly different one - but the treatment is the same.


Hi Lynne,

I think fuschia has pretty much answered your questions. Just one thing to add re HER 2 status. Tumours that are HER2 + tend to be considered more agressive/rapidly growing than those that test negative. I am HER2+ and was initially scared at this but have since discovered it is by no means the death sentence I had imagined it is. You are absolutely right, Herceptin is considered to be something of a ‘wonder drug’ and I thank god that many women campaigned tirelessly to make it available to all who need it. I guess people that 'thank god, they are HER2- are just relieved that they have a less aggressive tumour.

Being ‘triple neg’ is by no means bad and there are many many ladies who use this site that are triple neg. It simply means, as Fuschia said, that certain treatment options (namely hormones) will be of little or no benefit to you.

I wish you well for your results on the 23rd and for your continuing treatment. Please remember that if it has gone to the lymph nodes it does not mean that it has spread elsewhere in your body.

Take care and keep in touch,


Ah ok - things start to become a lot clearer now. Does that mean just chemo andrads will work then?

Thanks for helping me understand things a bit better. I know these are questions I should be asking the breast care nurse, however I cant seem to bond with her. I relay a few of my fears - which i am sorry to say is the morbid side, and thinking its near to the end for me and all she keeps telling me is there is life after cancer…and i know i should listen to her but she seems to just roll it off her tongue. I tell her things like well its grade 3 and what if its spread etc etc and shes saying well im sure you will be fine etc etc in which i just think oh well il go back and talk to the girls on the site.

Sorry to moan on and on.


HI Lynne

yes, just chemo and rads are the treatment options.

You can’t bond with every health professional you meet, so don’t worry about not getting on with her. You’re not moaning at all, perhaps she has become a bit complacent in her job if you feel it is rolling off the tongue.I think things will become a lot clearer when you see your Onc - good luck with the appointment.


Hi Lynne
I also have ER/PR neg and found out this week also HER2 neg so called triple negative. The ladies are spot on (as usual) you won’t have the hormone drugs if your HER2 comes back negative also. Please try not to worry too much - remember there are no ‘good’ or ‘bad’ ones to get - they all have their own set of worries but you are doing the right thing by coming to this forum. It has really helped me. Also - dunno if you have found this but there is another good site called - this one has a triple negative section.

Re: your BCN, I have a great one who I phone once a week and she has all the time in the world for me - haven’t found this with my new chemo nurse who just wants to get rid of me! I think I ask too many questions!!! Just talk to whoever you feel the most comfortable with and don’t be afraid to ask anything on here however small.

Take care

Hi Lynne

I had the same as you 10 yrs ago Triple negative medullary tumor with 6 + nodes. Had WLE, Chemo and Rads, am doing well even though have had another primary on other side last year, have finished all my new treatment and am on the road to recovery. My new one was IDC and also triple negative.

Hope your results from surgery come back good and all the best for your treatment


Not sure if i am reading this right, but looking on websites and triple negative breast doesnt have very good stats…

Lynne007 - a word of encouragement for you during these difficult days. I was first diagnosed with BC 17 years ago and it recurred this April but I am still here and I can assure you there is life after BC. Keep a very positive attitude and your sense of humour.
Do let us know how you get on and come back anytime no matter how trivial you think your question is. I can only say I wish this site had been around when I was first diagnosed. Thinking of you and sending you a big hug.

Hi Lynne
I looked up triple negative on Google as soon as I found out - then wished I hadn’t. Panicked myself - next day phoned by BCN - she was fab as ever - calmed me down and said chemo was very successful for trip negs. Just concentrate on each step at a time. Focus your energy into your battle and if you are feeling worried - take a step back and don’t wander into too many new/unknown/foreign internet sites…remember there are still lots of positive stories re trip neg and everyone is different.
Keep talking - it really helps.
Big hugs.

Hi All,

again, as always thanks for your messages.

all i have done all day is search websites for answers on TN breast cancers and all say it is very fast spreading and did use the word “deadly” which i wasnt to happy about - in fact scared me smewhat. I am not sure if i am doing right for doing wrong looking at websites. I guess I will know more when i go and see the doctor, and he will let me know how the op went etc etc.

I cant help it, im just very scared right now.x

Hi Ali,

I know I should be thinking postive, just really stuggling.

my mind is a whirl with worrying about losing my hair with chemo, then i think hey take a step back and get your appointment on Mon out of the way with first, and then i think about something else…im just scared thats all, and I know all of you are experiencing the same feeling so i am sorry for being me me me right now.x

Hi Lynne

Unfortunately hun, the internet is sometimes not the best place sometimes when you are trying to research a disease - so try to take a step back from it, if you can. Your Oncologist is going to give you the facts, and I’m sure that what he/she is going to do is give you the best treatment there is to add to the curative surgery you have already had.

It’s bl****y hard to think positive at a time like this, so please, please do not beat yourself up about it. You can only feel what you feel. (Before all this happened, I had fertility problems and used to be a member of a fertility site. Well, the women on there used to constantly repeat the ‘positive thinking’ mantra, and it used to drive me up the wall - if you feel negative, you feel negative.) Yes, you can put a happy face to the world and pretend everything is OK, and indeed feel positive and happy at times, but there will be other times when you think about darker stuff - in fact I would think it was unusual if you didn’t do. And TBH, I think when we have a diagnosis like this, our minds need time to mull things over and come to terms with the whole surreal breast cancer journey - that isn’t going to happen overnight. However, having said all that, if as time goes on, as treatment starts, you cannot get out of a negative fug at all, then perhaps you need to discuss some other strategies if you feel you are unable to cope.

Try not to worry about the hair too…yes it’s horrible having to lose it, but you may be able to keep it with the cold cap, or at least stop too much loss. And remember if it does go, it’s only temporary.

Best wishes,

Hi Lynne
Well if you can’t rant on to us…who else can you do it with!!! These are all feelings I’ve had. Scared myself looking up trip neg but never found the word ‘deadly’ - quite glad I didn’t!! I was really worried about losing my hair, but I am gonna try this cold cap thing and see what happens…but in the event it comes out I have now got about 5 scarves and have been practising tying them. The other day I put all my make up on, earrings etc, scraped all my hair back and did the scarf thing. I went in to Emily’s bedroom (aged 5) and said ‘What do you think?’ and she said…‘Wow Mum, you look really cool - you look just like a pirate!’. It made me laugh so much and if she thinks it cool then that’s ok by me! My husband thought it was good too, and with sunglasses too - it looked a bit glam!!! There are s*it times to come, but we will do it!!!
Take care
Hugs from Ali xxx

Just a word. I am a big information fan - and my oncologist has warned me not to look at internet- info may not be checked and will be out of date. So I am taking him at his word and only using this site - I made the initial mistake of looking at what my outcome might be and not good reading so putting that behind me and reminding myself that medicine moves so quickly in the area of BC that my outcome will be different to women diagnosed a few years ago. That said still scared. I have grade 3 with lots of lymph involvement so scary stuff.

Good Luck

One site that is definitely recommended is of course the one, which is brilliant for all info on chemo and other treatments etc.


Lynne I too am triple neg and my oncologist said I have an 85% chance of 10yr plus survival.My cousin is triple neg and has just gone 6yrs from dx with no recurrence or anything.If you use that Nottingham Prognosis Indicator it doesnt factor in hormone status at all.My lump was 2cm ductal and I’ve had chemo and rads.I was told taxotere is especially effective.We will have a good chance,there are no 'good’cancers but there is lots of hope for the horacexx

Hi Lynne 007

The time after diagnosis is really scary and it sounds like you’ve got a rotten breast care nurse…she’s probably seen hundreds of breast cancer diagnoses but she’s forgotten that for each new woman it’s the first time.

I’m a great fan of Musa Mayer who has written a lot about breast cancer. She distinguishes two broad kinds of reactions to living with breast cancer. She calls some people minimisers (they are the ones who don’t like too much information, talk about looking on the bright side)- this is a fine coping strategy for some. For others, myself strongly included, this approach is not good. Mayer calls people like me information seekers. We need a lot of information to help us make sense of what is happening to us. Maybe you are an information seeker too.

I was diagnosed with triple negative bc in October 2003 and have learned a lot about it since then. I have ducal cancer (starts in the milk ducts) which is the commonest kind (70%) of cases. About 10% of cases are lobular (start in the breast lobules.) and around 3-6% of cases are the rarer medullary kind which you have. In medullary cancers the border between the cancer tissue and the normal tissues is relatively well defined, and according to one reputable site on the internet medullary cancers are generally treated in the same way as ductal ones, though statistically…all other things being equal the prognosis averages out slightly better.

Another interesting things about medullary cancers is that they are commoner among women who carry the BRCA1 gene. Many BRCA1 breast cancers are triple negative too.

So moving on to triple negative breast cancer-There is lots more information on the internet about triple negative breast cancer than there was when I was first diagnosed. I think this is partly because there has been a surge of research interest recently. In the past triple negative disease has been very under researched. As others have said triple negative bc is treated through surgery, chemotherapy and radiotherapy. Tamoxifen and a group of drugs known as aromatase inhibitors have been developed for er+ and pr+ cancers (Oestrogen and progesterone positive) and made big difference to disease free survival times for those cancers. Recently too herceptin has been developed as a targeted therapy for her2+ cancers. Now attention is turning to triple negatives…and not before time.

Breast cancer is not just one disease but many and yes triple negative bc is an aggressive kind, but always bear in mind that cancers are also unpredictable and many things affect survival and outcomes. e.g. number of lymph nodes involved, whether there is vascular invasion, size of tumour. Research in the laboratory is going on to find out what makes triple negative breast cancer grow…hopefully this will lead eventually to the development of new treatments which target these growth factors. Clinical trials are going on mainly using chemotherapy drugs…some which have been used on other cancers. Triple negative cancers do often respond well to chemotherapy…some er+ and pr+ cancers don’t respond so well to chemo, but respond well to the hormonals which aren’t suitable for us.

Until 3 months ago I would have been telling you my story of being diagnosed in 2003, having loads of nodes with cancer, doing chemo and rads and mastectomy and now living very well. (I had also been misdiagnosed 7 months earlier.) All this is true…I was well and healthy for two and a half years after treatment finished…at the time of my desperate despair at diagnosis I would have never believed I could have that time or that I would ever laugh again or enjoy anything again. But the human spirit is a wonderful thing and we do somehow all learn to live with cancer…not only if we become happy long term survivors (and I know many) but also if we are not so lucky. Yes I have now got a regional recurrence and am back on chemo, but because I am informed I feel I can cope with this too. Well 'cope’ is the wrong word…but yes yes yes we do all find our own strategies for living with this. You will too.

By the way you might want to read an article I wrote for Breast Cancer Care Newsletter with Emma Pennery nurse consultant for BCC. It was last autumn’s issue and you’ll find it on the website. I’ve been trying to persuade BCC to produce a leaflet on triple negative bc for nearly three years now so please everyone who has contributed to this thread ask BCC when its going to happen. Your post Lynne shows how much it is needed.

I could write reams more. Of course you are scared…it goes with the territory, but you won’t always feel as bad as you feel now. The fear changes, comes in waves, and there is still much good life after and with breast cancer whether we become a good news story or a not so good one.

Very best wishes as your treatment starts.


You are so well informed - I feel better for reading that and I’m sure that Lynne will benefit from that also.
I am an info junkie and since dx have been annoying the hell out of everyone by trying to find out as much as poss - it definitely helps as i feel i can talk confidently about it without getting too upset if i am dealing with the facts.
Thanks to you and all the other ladies on this site that make it worth coming back to.


I feel I should thank you all for replying, but also especially Jane:

Thank you so much for taking the time to write your long message. Its made me think a little different, but more positivly.

I went to see my BC nurse today to have my dressing removed after my WLE and a few lymph node removal and discussed that I had been talking to everyone on this forum and she was quite pleased, however I asked all of the qustions about moving forward etc and she was uneasy to answer the answers(as per usual) so I pretty much told her the answers becasue of my asking questions on this forum.

just to give you an example - when i was diagn, there was a fill in nurse becasue my nurse was on holiday, the stand in nurse who works twenty min up the road in another hospital seemed lovely and wasnt quick to thro my parnter and i out of the door…my local nurse came back and called me the day before my op to introduce herself and i relayed my fears in which she could just reply oh you will be fine…i went in for my op, she came to see me for ten min with a student nurse to have a feel and off i went to theatre. She came back the next day when i was due to be discharged and said she would come back with exercises…i waited and waited and decided to just go - had had enough of hospital, plus id been told at 9am i could go and at 1.30pm i was still waiting. She waltzed onto the ward and was showing the nurses bra’s etc and they were all going to the staff room to try them on. My partner went up to the ward sister and asked where my letter of discharge was and she explained they were doin a staff change over and the breast care nurse would be with me shortly…2pm a duty nurse came and discharged me…My BC nurse called me late afternoon to say i had gone and she should have given me exercises and that she would send them out…this was 4pm - what time was she planning on coming to my bed and seeing me!!!

no exercises arrived and when i went today i explained that i hadnt recieved any to which she replied she had forgotten to send them…

ARGHHHH, i feel so frustrated right now…i feel like i should ring the nurse at the other hospital, but then again i feel i shouldnt go behined my nurses back…

Anyhow, sorry for the moan - thanks ladies ALL of you…you make it worth trying to stay positive for.