HER2 positive

Hi 

Warm welcome to the club no one expected to join :(

The standard 'very effective' treatment for HER2+Positive BC is Herceptin and the newer addition of Perjeta aka Pertuzumab which are both targetted biological therapies. Downside to this is they are only licenced by NICE to be given in conjunction with Chemotherapy (not on their own) So the short answer in unfortunately, yes you will be offered chemo. The more common regime is termed TCHP so if you put that into a group search it will list all the messages that TCHP appear in.

There are quite a few ladies here who are having or have had HER2+ treatment who will hopefully reply back. As a bit of reassurence J my better half was diagnosed HER2+ way back in May 2012 and had her a 'no evidence of disease' result back from her 6 year review.

It can be a bit harsh some days but it works. Have you been given a date to see an Oncologist as yet, or are you expecting surgery first  ?

Sorry, this is probably not the reply you may have been hoping for - Group Hugs, G n' J

Hi Dreamthief

Thanks for replying.  I did get told when at my results it was more than likely but after reading things online it all gets a bit confusing and scary.  I haven't received the date as yet.  My surgery is next Tuesday when I'll get a dose of radiotherapy and have been told my appointment will be two/three weeks later.

Hi 

Surgery first then, so you may not get the P part of TCHP... If you have any questions regarding clothing to take in or post surgery recovery do start a new discussion an ask, you will soon get some replies, we're all here to help if we can.  Do you know if this will be a mastectomy, or lumpectomy ?

The radiotherapy you mention is probably a nuclear tracer injection they use to find the nearest lymph nodes to the tumour as they usually take the 2 or 3 nearest nodes to carry out what they term a SLNB sentinel lymph node biopsy - so not radiotherapy as such. This is standard practice to see if any of the nearest nodes have trapped any cancer cells.

Know the temptation is great but do try to say away from Dr Google; a lot of the info is oudated or worryingly misleading. Stick with sites like Macmillan, BreastCancerCare or Cancer Research UK (CRUK)   :)

Don't fill your head with chemo info for now, it will be at least a month and fully healed before that starts - Take all this one step and one day at a time. Do you have children to be informed at some time and somone close to help you with all this ?

Hope this helps with the rabbit in the headlights scenario, G n' J

Hi

Really sorry you find yourself here, but as says, there are lots of ladies who have had a similar diagnosis to you, myself included. My understanding is that perjeta is only given when the tumour is over 2cm and is used to shrink the lump, it isn't licensed in England for post-operative use yet ? But I may be wrong.

I had the radioactive injection on the morning of my operation (lumpectomy) to identify the sentinel nodes - everyone has between 1 and 5. At my hospital they check the nodes whilst you are still under, and if needed remove the rest of the nodes if cancer is found in the sentinel, however every hospital is different, so you may have a different process.

Lumpectomy is generally day surgery, I was fine after mine but make sure you do the exercises they give you. Be aware that 20 % of lumpectomies are not fully "successful" and need further surgery.

When you go back for your results you will get a definate diagnosis, and if you are HER"+ you will be offered Herceptin, a wonderful drug for HER2+ cancers. however this has to be given in conjunction with chemotherapy of some sort. Mine was grade 2 and I had no spread to the lymph nodes so had a chemo drug, Paclitaxol, every week for 12 weeks.

However it will depend on your own particular cancer as to what regime you have, breast cancer is more than one type of disease and everyone has the best treatment plan for them, so try not to wonder why someone has something you don't etc.

Two years ago I was just about to start my chemotherapy, and whilst it can be gruelling, it is doable.

Very best wishes,

Jo x

Hi Dreamthief

You've been very helpful.  It is a lumpectomy I have to get.  I'm going in on Monday to have the injection for the nodes.  I thought they had said radiotherapy during the op but possibly not, there's so much to take in when having that conversation.

I do have two young kids, 6 and 10 but am hoping to keep them blissfully unaware as long as possible.

Hi Jowootmot

Thanks for your response, it is very helpful.  I'm having the injection the evening before the op but I'm not sure if they check the nodes there and then during surgery.  So far I've been informed it's grade 3 and HER2+.

Kind regards

Caroline

Hi and another welcome to here 

I have just got through my 1 year romp with HER2 +++. I always joke it’s the first time I got full marks in a test . Feel free to read my story( gawd I hate journey). It wasn’t all easy but 2 weeks ago I got the all clear . So one year out to get well. And don’t imagine that my story will be the same as yours. Yes we have breast cancer but we will all get through this in our own unique way 

You may find drip feeding the children basic info.  a good plan. Mommy has a sore breast that the doctors can fix etc etc. But don’t be surprised if their radar picks up more, so be open and simple. Their schools will have support systems in place to help them too. So speak with the Head or a senior leader .

Gather all your caring and safe friends or family around you. You may find some will struggle with your diagnosis, but it will sort out the wheat from the chaff. 

Accept help from feeding the kids to cleaning the loo to driving you to appointments

Above all keep posting here 

And make you the priority in your life for the coming days

Leolady56 - here 1 year on and a little older than you!! OK a lot

It's really refreshing to have positive responses.  The past couple of weeks have been a bit of a rollercoaster but I am of the go get it attitude.

That's exactly what I've been doing with the kids after the biopsy and one of them got a "softly" after a hug, I advised that mummy had a bump to it in work.  Going along those lines with the op in that it hadn't healed properly.  It's such a daunting thought to sit them down, definitely moving forward with the softly softly approach at the moment.

Hello , welcome to the world of HER2+. I bet like me you’d never heard of that before your diagnosis.

i was diagnosed in September and have just have my first of 7 chemo sessions. I was terrified about being HER2+, but at my first appointment with my lovely oncologist, as I walked in the door he said ‘oh hello, I like HER2+ ladies!’ He then went on to explain all about it and why they were recommending my treatment plan. I felt completely reassured ( well as much as you can be ) and now trust the team looking after me at the hospital.  Herceptin is a game changer for us folk.

No one is going to tell you this is going to be easy or quick, but this site has been invaluable in giving wonderful support and advice, or just being able to have a complete meltdown with people who are non judgmental understand exactly how you are feeling.

One piece of advice I picked up here was that the period before treatment starts is the worse, so it’s good news you are getting on with it.

Good luck and keep in touch. 

Hi

I’m wondering if you are going to have intraoperative radiotherapy (TARGIT IORT). I think it’s only offered in a very few hospitals. 

I would also echo what others have said about telling your kids. Please make sure the schools know and they will keep a close eye out for them and offer support as necessary.

wishing you all the very best.

Liz x