Confused and scared

Today I had my appt for my scan results…and got confused.

For the past 2 and a half years, I have been being treated with hormone therapy (Tamoxifen, Femara (did not agree with me - migraines!!), Arimidex and now new prescription received for Exemestane) after having a bilateral mastectomy in August 2007. I was told that the cancer was hormone fed, hence the hormone therapy…

Today, I have been told that in one of my boobs, the cancer was hormone positive…and the other was HER2 positive. The consultant then asked if this had been discussed with me before. I answered no, as I had no idea what she was talking about. They are going to talk in an MDT meeting over the next few weeks, to see if they can get a bone biopsy from my tumour area in my pelvis on my left side (I have secondaries in my bones, already had my right femur replaced) as it’s in an awkward place, and then see if I need Herceptin…

My main worry is… what if my cancer has been HER2 all this time and I have been receiving the wrong treatment for it for the past 2 and a half years? I had my ovaries removed a few weeks ago, because I was told that I would never be able to have my eggs harvested to have my own biological children, so I had them removed as a preventative measure. What if this could have been prevented?..

I have lots of questions to give my oncologist when I next see them, but I’d love your thoughts and opinions of what I should be asking…

I apologise if this comment is a little disjointed, but I’m a little confused and scared about the whole thing at the minute.

Thank you.


Cant offer much advice, except to say that you can be hormone positive AND HER2 positive. They are 2 different things and you can test positive for both.

I am a bit confused by your post(does not take much)!!
Are you saying that you had 2 tumours that were both different in their pathology? If so what was the pathology for each one??

Are you wondering if your mets were from the tumour that was HER2+ rather than the ER+ one??
Have you been on herceptin? My cancer came back after 8 years. I asked for an HER2 and was told it would be extremely unlikely after 8 years clear. It came back very strongly positive.

What I am saying is, try not to worry too much at this point. Things dont always follow a set plan. Try to find as much information as you can.

If any information has been withheld from you, you have every right to be furious. However I am just wondering if this HER2 status is a new thing??Sometimes the results take a while.

Julie x

Hi J
Not surprised you’re confused about what happens next in your treatment plan. Just to echo others, yes, you can have more than one type of BC at the same time, i.e. ER+ and Her2+. It could offer you a wider range of treatments, and it’s good to hear that your onc team want to ensure they’re using the right stuff to deal with your bone mets. If it’s any reassurance to you, I’ve been on exemestane for four years, with few side effects – hope it treats you well and does the business.
Thinking of you.
Marilyn xx

Hi poannie, it must have been a bit of a shock for you. I was borderline when first tested so had the FISH test which came back negative. Have you read this link? Might be useful?
it mentions, at the end, herceptin is usually taken alongside hormonal treatment…Take Care…x.x.x
PS…yes I too also know others who have had 2 types of bc.

Hi Poannie

I wonder if your her2 status has changed. This happened to me, my original bc and re-occurance in the same breast were Her2-, however I then had a re-occurence in the other breast and this turned out to be her2+, I believe this only happens in about 5% of cases. Mine have all been ER+. (Co-incidently I also have secondaries on the left side of my pelvis). Hope you get the answers to your questions soon.