Diagnosed with grade 3 her2+

Hi I’m kit 56.  Got my diagnosis yesterday after being referred super fast last week.

Knew I had a lump … thought it might be OK but it really isn’t a it turns out.

Lump  is about 2cm, grade 3 … oestrogen +  and  her2+.

I thought it would be OK…even if it was cancer … but I don’t think it will be now.

Op in early Feb in n.e England to take out lump  and some lymph nodes to test them … THAT won’t go well I’m quite sure.  It’s BOUND to have spread.    It’s insane…couple of weeks ago I was fine …or so I thought … NOW what is my future? 

Can’t eat, can’t sleep.   

Just want to run and keep on running.

Hi Kit

What’s your future? Whatever you choose to make of it after your treatment. Once you’ve had surgery and they secure adequate margins, you’ll be cancer-free. If it’s moved to any lymph nodes, that’s the lymph nodes doing their job, preventing it from going any further - so thank heavens for lymph nodes. They may be removed, they may be treated with radiotherapy. There’s a lot of stuff ahead but it’s unique to you. My experience doesn’t help at all as I was greedy and had two tumours, one ductal, one lobular, one hormone-receptive, one not - and a LOT of infected nodes, despite a clear mammogram months before. The important thing is that what lies ahead is manageable (not nice) and it works. You should come away from this without likelihood of any recurrence - so there’s your future. 

This is a very difficult time emotionally. A cancer diagnosis turns your world upside down. It’s not helped by the common perception of cancer as leading inevitably to death. That’s so last century. There are so many different treatments now that oncologists can tailor a treatment for your specific diagnosis. So use the coming weeks, before you get your full treatment plan, investing in your emotional health. This isn’t, sadly, something you can run away from. It goes with you everywhere. So you need to work hard at building up your resilience so that you deal with what lies ahead as calmly as you can. I’m not a great fan of Be Positive. If you want to cry because this is the end of the world, you do that. I am so envious of people who can cry! But then work out what you can do so that it isn’t your default position. Some women go running, some bake, some do yoga. There’s meditation, mindfulness, tai chi… There are apps like Headspace and Calm that are NHS endorsed. Me, I find my support on YouTube where there is such a range of videos to support mental wellbeing. I’m a huge fan of Progressive Hypnosis and use the Cure Anxiety every morning.

Try and stay in the NOW, not project your fears into the unknown future (which you’ll regret) and PLEASE stay off Google. If there’s anything you need to know, the nurses’ helpline above is brilliant. Ring your breast care nurse. Ask your consultant. You need to know things in your context and you also need to decide how much you want to know. Me, I just trusted my team and lived in ignorance until treatment finished. Then the questions began.

I wish you all the best in what lies ahead. It’s not easy. We all deserve medals!

Jan x

Hi Kit

Sorry to hear you are joining the club, but just wanted to let you know you are not alone.  You are in fact me just about 12 months ago.  I went to my GP on 9 Feb 21 with a lump and slight nipple indentation, given urgent referral and on 22 Feb had my appointment. One week later it was confirmed I had grade 3 tumour which was Her2+ ER+ PR+ and had a 21mm lump. I had a lumptectomy with nipple removal and had my lymph nodes removed, followed by Chemotherapy & Targeted Therapy (for the HER2) then Radiotherapy and am continuing with my Targeted Therapy by Injections once every 3 weeks. I get my injections done at home. I have recently started on Hormone tablets, I have to take these for 10 years!! At least it’s only one tablet a day

I’m not going to lie, like you I was panicking, thinking is my life was over. How do I feel now, well I’ve nearly completed my treatments, in a week I’m going to be travelling to France to help my daughter as she is due to give birth to my second grandchild at the end of the month and if only we could get the Covid problem sorted out life would be really good.

I had wonderful support here from the forums and whilst it is still early days, I want to stress all my treatment has been to prevent re-ocurrence, once I had the surgery my cancer was removed, the rest of my treatment is classed as preventative. 

I hope this will give you some measure of reassurance, there are alot of us grade 3 Her2 ladies on here and there are some really good examples of great outcomes.  The injection I receive is called “Phesgo” and was only released this year, it makes the treatment much easier and goes to show how much Cancer Treatments are improving all the time.

It will take time to come to terms with your diagnosis but don’t be afraid to ask questions from your medical team, get advice from geniune sources and be kind to yourself.  If you have any questions feel free to message me, but the one thing I have learned is that every case is individual, treatments may be similar but no two cases are exactly the same, also different areas of the country do things differently too, for example I live in Wales.  I really do hope this helps.  By the way I was 62 when I was diagnosed. 

Take care and try not to let your imagination go into overdrive, easier said than done I know,  the one thing you will find on this forum is that we have all been where you are now so we understand.  Big Hugs.

Yvonne

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  • Hi, I’m another grade 3 HER2+ Er + lady,  about 2 years ahead of you. Diagnosed oct 2019 with a 4.5 cm lump plus one lymph node positive which meant I was stage 2. I had 8 chemos and got a complete pathological response. Then lumpectomy followed by radiotherapy. I continued with the herceptin and Perjeta ( 18 rounds in total). I just take tamoxifen now.
    I felt the same as you when I was first diagnosed, I couldn’t eat or sleep, laying awake wondering if I was going to be here in a years time. 
    I’m sure you’ll feel better once your treatment starts and before you know it you’ll be out the other side. Like someone else said your future is what ever you want it to be… this is just a bump in the road. 
    sending hugs x