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Her2 +

15 REPLIES 15
Vintage
Member

Re: Her2 +

Hi
Yes it's a shock. My gp was sure it would be nothing. So I waited 11 weeks before I was seen by breast specialist. Nothing shown on mamogram and tumor did show on ultrasound.
I hear the perjeta is very good for shrinking her2+ tumors with the herceptin . And also fab it's just been approved on nhs.
I had surgery first. But would have no chance of being given perjeta as I live in Scotland and it's still not been approved here on nhs 😟
I will watch out and see how you are getting on with chemo. I was on the August starters.
You will get through. Any side effects tell your oncology team as soon as. And they will give you medication to help. Do not suffer in silence.
Best wishes
Vxx
Scotty66
Member

Re: Her2 +

Hiya V Yes I'm having chemo first. FEC-T with herceptin and perjeta (?) I think it's relatively new to use it in our circumstances. Just approved by NICE I think. Another weapon in the armoury! I'm 45. Felt a lump in the shower but honestly thought it would just be a cyst. How wrong I was!! 50mm and under arm pit. We'll have to see how much it shrinks in terms of surgery but that seems a long way off at the mo. But look at you  finished chemo! Here's to a happy and healthy 2017 x

Vintage
Member

Re: Her2 +

Hello Scotty66 🙋
Sorry to hear you are joining our club x
I was terrified too. I remember calling my nurse in tears after reading about it and in such a panic.
Do not google any more. Only use this site or your bc nurse for information. Most of what is on Google is well out of date. With the herceptin you will have with chemo your outcome will not be any worse than non her2.
I had fec-t and herceptin. I just had my last chemo 2 weeks ago!!!!!! So just recovering. I will continue with herceptin injection in my thigh every 3 weeks for a year. My oncologist told me that in the future you will only have the herceptin for 6 months as new trials are showing this just as effective, which is great news.
I had idc grade 3 and large dcis area. I am 46. I felt no lumps but had a small discharge from Nipple. I decided on a masectomy no recon for the moment.
Are you having chemo first? Happy to keep in touch. Any questons , fire away x
Vx
LMB212
Member

Re: Her2 +

Hi Scotty I was Her2 +. Had lumpectomy but didn't get clear margins in Feb 2016 followed by a skin saving mastecomy with immediate implant March 2016. Chemo April to August FEC T I did cold cap and maintained a good amount of hair didn't use a wig and managed with top up hair fibres. I started the Herceptin with the 2nd round of T and haven't had any big issues. I worked throughout my treatment working from home during the chemo. Returned to office end of August and had radiotherapy 20th September to 10th October again and thankfully no issues. My herceptin injection continues till mid July had one 21st Dec and due next one 11th Jan. You can do this and whilst you will have dark moments the support on here is great. What is your diagnosis I have a Grade 3 IDC after lumpectomy and SNB one of the 3 nodes the took out had macro traces of cancer so I had a full node clearance when I had my skin saving mastecomy. All the tissue removed and all nodes where clear so effectively the lumpectomy had worked but wasn't prepared to take any chances. The right boob looks great even without a nipple I just want my left one sorting now. I was a G cup so I need the left one reducing.

Love and hugs Lou x

Scotty66
Member

Re: Her2 +

Hiya. I know this post is old but it sounds as if you're a long way down the roas I am starting out on. Also er- and her+. Wish I'd read your advice about goggle sooner. Boy did I scare the bejesus out of myself! Waiting for treatment to start next week. If you're still around would be good to keep in touch. Emma x

SuzyEB
Member

Re: Her2 +

Vintage, I'm also a Her 2+ve. I'm just finished my active treatment and am on Herceptin for the rest of the year. I had a complete response to the chemo and the rads. It is a hard treatment but you will get through it. Take it one day at a time and listen to your body. Spend time with friends and enjoy the time spent with friends and family. It can be very tiring in every way so take any help that is offered and don't feel guilty. Do not google as the articles are a little out of date.

I have just started back to work and it is wonderful to get back some normality. There is an end to it all and you will get there. xx

Bibi44
Member

Re: Her2 +

Vintage you are definitely in the worst place right now & you will feel better once you have your dates & know the treatment plan.  Then it'll be a case of just getting through it, day by day, week by week & then you'll be out the other end, feeling a bit battered & bruised mentally & physically, but on the way to recovery.  I wish you strength to get through it all xx

Lovewine
Member

Re: Her2 +

Hi vintage, i was diagnosed april 2014 with ER - HER 2+ , felt like you to begin with, couldn't eat, sleep or concentrate on anything, G.P gave me citalopran for anxiety and mild sleeping pills which really helped. I had chemo first, then a mammoplasty and a year of herceptin given at home by lovely nurses, as others have said, dont google! You will feel better when treatment is underway. I have a friend diagnosed 15 years ago with HER +, herceptin not available at that time, she just had chemo and rads as well as surgery, she is fit and well now! Good luck with your treatment! X

ann-m
Community Champion

Re: Her2 +

Hi vintage,  This is the worst stage & is not surprising you feel the way you do when waiting for investigations & treatment dates. It does get better once you have your treatment plan & it starts. I remember feeling much better once dates were in place & treatment started.

take care

ann

xxx

Vintage
Member

Re: Her2 +

Hi Loolyboo, Jenjen, Bibi44, Cara0165 and Road runner,

Thank you all so much for replying , it helps to hear a positive side to her2+.
I called my BCN today. She said not to Google and that it's mostly the negative stories that come up that are out of date. But all your posts are helping me way more!!
If there are any others out there with positive experiences, keep your stories comming : )

I also called my GP and he has given me something to help with the panic I am feeling.
Got a chest xray today because I have pain in ribs under the affected breast, so will hear about that next Wednesday also along with more biopsy results, and whether I need to travel 4 hours away to Aberdeen for another guided core biopsy using MRI. Await meeting with plastic surgen to see if I want reconstruction ??when I have my MX. It's never ending. Over 4 weeks since first told it was cancer. And still no date in sight for surgery.

Does this panic go away any when your treatment starts? I can't imagine feeling like this forever more.
I am unable to eat, and hiding myself away , tearfull , can't move myself to do much apart from search this forum for advice and hope.

All the very best to you all
Vintage xx
RoadRunner
Member

Re: Her2 +

You really shouldn't worry about being HER2+.  It used to be bad news, but since herceptin it's no worse that HER2-.  I was diagnosed in 2007, had herceptin throughout 2008, and I'm fine.  An aquaintance was diagnosed two years before me, she was one of the earliest to get herceptin for primary BC, and she is fine too.  A lot of the research and statistics out there were done before herceptin was widely available.  

 

Googling is fine, as long as you understand what you are looking at.  When I was first diagnosed the CRUK statistics were very out of date.  They said I had a 10 year survival chance of 22-40%.  Truly terrifying!  But I googled a lot, read a lot of research and realised how out of date it was.  My chemo regime gave me nearly an 80% chance, and I also realised that didn't include the effects of herceptin.

 

By its very nature, these statistics are always out of date, because to be meaningful they have to follow people up for several years.  Then the data has to be analysed, research papers have to be written up, peer reviewed, and published.  All this takes time.  By the time we are reading about it, years have passed.

Cara0165
Member

Re: Her2 +

Hi vintage! I am her2 and er + also, I don't start herceptin til my 4th cycle... 1 down 5 to go! I met a woman yesterday who has been 9 years clear who was also her2 er + she had herceptin and has 2 years left of tamoxifen and is doing great after Dr's initially said she wouldn't make it. So there is hope!
Bibi44
Member

Re: Her2 +

Good to hear you are doing well after your op JenJen.

Vintage I am HER2+ & saw a nursing friend wince when I told.  Hit on Dr Goigle & scared my pants off until I came across a speech made in Oct 14 entitled "it can now be said that the era of worst outcomes for ladies with HER2+ BC is well & truly over". It made me feel SO much better.it was obviously talking about the impact of Herceptin. Then I realised all the scary articles were a few years old & were totally out of date.  The first trials of Herceptin were only 5-10 years ago in the uk & it was licensed only a couple of years ago.  Hence there us no real info on long term outcomes except the stuff relating to the pre Herceptin era.  Take heart Vintage, the outlook is brighter than you think. Good luck with your treatment. xxx

JenJen
Member

Re: Her2 +

Hiya 🙂

Im er-pr- and her2+

I had neoadjuvant chemo and have just 2 weeks ago had my MX.

First advice step away from google! x

My oncologist also used the words lucky he said the herceptin would melt the tumour and that it was good to have the targetted therapy.

I started herceptin in January after 3 cycles of EC chemo and the melt thing was right I started with a 7.5cm lump and a smaller one in my lymph nodes and it wasnt moving much on EC after a week or 2 of herceptin it was shrinking fast. I have had 7 now and have had no side effects from it.

I had an MX2 weeks ago I got my results and nodes had cleared up and tumour was so small it didnt really register.

Its OK to be scared and low as long as you talk it out, get it out then pick yourself up . Its scary when you are first diagnosed but I promise it gets easier so come on here and talk about it because we have got your back.

Oh and again..dont google xx
Loolyboo
Member

Re: Her2 +

Hi Vintage, I'm also her2+ and my oncologist explained that we are very lucky to have the targeted therapy Herceptin - it is given by injection 18 times every 3wks (just over 1yr in total).

It is an antibody that blocks HER2 function. Herceptin activates the body's immune system and undermines HER2 signaling to reduce recurrence.
I had my first injection on Tues followed by my 4th chemo on Wed with no side effects.
I hope this helps 💕
Loolyboo xxx
Vintage
Member

Her2 +

Hi
Has anyone got advice about her2+ ?
I am er+ and her2+.
I have frightened myself silly today reading stuff. Having a real low again.
Oncologist has not really said anything about it apart from that I would now need chemotherapy and herceptin.

Thanks
X