Newly diagnosed - worried about being HER2+

Hello, 

 

I’m new to the forum. I found a lump in early December and was diagnosed with cancer in the left breast on January 2nd. Since then the tests have revealed it’s 3.5cm, invasive ductal, grade 3, ER+ and, today, HER2+. My consultant was very upbeat about this and said Herceptin etc. would be very effective (I’ll start with 5 rounds of chemo and targeted drugs, then surgery), but, looking online (I know, I know) it seems that my chances would have been better if it were HER2 negative? I’m due to have a full body MRI in the next two weeks, as well as lymph biospy, and am concerned they are doing the MRI because they think it may have spread already. Does anyone have any positive HER+ tales to tell!

 

Thank you, 

 

Clare. 

I just want to wish you well and good luck.  I am awaiting a mastectomy on 21st Feb. Different outcomes to yourself but hope you get all the help and support along the way.

Lyn xxx

Hello Clare,

I wasn’t HER2+ but I’ve met several people while going through treatment who are. In fact, about two years ago, I met a lovely women who was one of the first people to have Herceptin in the UK 12+ years ago. She had never had a recurrence in all that time and was the absolute life and soul of the event I was at. Herceptin is considered the gold standard drug for HER2+ breast cancer and the outcomes from treatment are extremely postive.

You are in good hands.

Ruth xx

Hi Claire How are you ? I was diagnosed with exactly the same in April last year. I had a mastectomy and then Chemo which I finished just before Christmas and am now on 3 weekly Herceptin and Letrozole tablets daily . I don’t know what age you are but I’m not sure it matters that much the feelings are the same.
I found that the Chemo was not as bad as I expected and the mastectomy was OK too but it’s how you feel like about yourself afterwards. Are you having reconstruction? I chose not too but if I had been younger it may have been a different choice
The best help I can give you is to spend time accepting the situation. I found being on my own to do that was best. Once you have accepted what is happening it becomes easier. Face each day as a new day and a different day. Try not to look ahead just deal with that day
You will have good days make the most of them and bad days then be kind to yourself and ask for and accept help. You do not need to be super woman. When you start to loose your hair unless you are having a cold cap which will be different instead of being upset each time you see more hair dropping out bite the bullet and shave it off and then you only have face it once. This is a very long reply so I hope I have helped in some way. These are ways that helped me but you may not feel that it will help you. They are offered only. I am doing well now . It was hard but you will get through it
No choice in this journey but how you travel it is down to you. big hug and be strong there is an end to it x

Hi Clare

Firstly, the information you find online is invariably out of date, often by many years. It is true that before Herceptin the outcome was not as good as other types of breast cancer, but given the nature of HER2 it seems that they have been able to identify and develop new drugs to combat it. I was HER2+ and was diagnosed in 2016, so had Herceptin, chemo etc. Since then there is a new drug added to the treatment (if you are having chemo first) called Perjeta, this has only been around about a year, and combined with the Herceptin seems to be even better than Herceptin alone. There is also a new drug, Neratinib, which is currently at the end of trials and may be licensed soon, this is given after the Herceptin is finished - so there are always new options coming along, so please don’t despair !

My sister in law had HER2+ breast cancer and was one of the ladies on the trial many years ago, she is still here and fighting fit.

Scans always come with anxiety, so you will be anxious for a while whilst they get everything in place for you, the reason why some people have scans and some don’t don’t always seem to follow guidelines but are dependant on many various factors.

 

Hope everything goes well for you

Jo x

 

Hi
I too have just been diagnosed with HER2 it’s in my breast and lymph under my arm at the minute I’m praying the next scans I have show it’s nowhere else. Big hugs to you I’ll update you when i get my full results etc ?

Hello,

I had HER2 positive and am still here!

 

I used a cold cap and kept lots of hair plus I fasted before chemo to lessen the symptoms.

You will be alright xxx

Hi Clare 

Sorry to hear your news but HER2+ is not as bad as it sounds

My diagnosis last June was grade 3, 2 x small tumours, stage 1, HER2+. I had a lumpectomy, sentinel lymph node removed, chemo & radiotherapy & my rads finished 24/12/18

Herceptin is a targeted therapy specifically designed to treat HER2+ which is good news. I’ve been having herceptin every 3 weeks since October & have had very few side effects 

Good luck with your treatment, I’ll keep everything crossed for you

Jude x

 

 

Hi clare

so yes I’m HER2 positive too. I’ve got stage 3 a 9cm tumour in my left breast and some lymph nodes also have it. 

Ive just had my mri and ct scan results and it’s no where else ??. Got a heart scan and kidney function test on Monday then we should be starting treatment ASAP. It’s been a shock to me, hubby and family. I’m 35 no family history and got 3 most amazing boys. 

The majority of people I’ve spoken to have said the HER2 positive is better than the negative as the targeted treatment has a much better outcome. Not a journey I’d imagine I’d be on but I’m going to stay as healthy as possible. 

Many tips for reducing chemo side effects would be greatly appreciated.

Thanks

 

Stephxx

Oh my goodness, I’m so sorry, I’ve only just come back on here and had no idea there would be so many replies - I frightened myself on Google and decided to stop looking online. Thank you all so much for your messages! I started out feeling very positive, almost superhuman, about all of this, but had a big emotional crash about two weeks ago and have been very shaky since. My microbubbles have showed no sign of cancer in the lymph nodes, which is good news, but am still anxiously waiting to hear the results of my Bone and CT scans (am of course convinced it has traveled!). I have my first chemo on Thursday and then on Friday and am losing sleep with fear of it, but am sure it will be better once I’ve takekn the plunge - it’s the waiting that’s awful, eh. I have two boys, 11 and 18, the latter about to take his A levels and I just can’t bring myself to tell them (I seem to be doing a good job of looking normal, though don’t feel it). I realise I may have to, very soon. I shall look on here more often, now, thanks again for all your advice. x

Hey, how’s it going?

 

Ive recently been diagnosed with HER2+ too, and it’s in my lymph. I start chemo on Thursday. I’m scared because I have a 5 year old and I’m so worried how this will effect him. And, I’m just scared in general… 

 

I hope you’re coping with treatment and feeling positive …