Looking for Her2 positive buddies

I have just poted on "Newly diagnosed " too so will make thsi quite short.

I was diagnosed with Breast cancer on 4th Dec .12. I am er/pr neg but her2 positive.

The her2 side of things make me very scared.

I would love to hear from anyone her2 positive further on in their journey then me. Mx next week followed by chemo prob February then Herceptin.

Thank you


Hi Lavendersun, Iam HER2 positive. I am post surgery 6 weeks - and will be having chemo, herceptin and rads. My bc was lobular with DCIS. There is a trial being conducted on herceptin at the moment.



Hi Lavendersun

I was diagnosed March 2010. ER and Her2 positive. I had 4/16 nodes affected and had a mastectomy and lymph node clearance. Then I had FEC -T chemo, radiotherapy and a year of Herceptin. I have also since had genetic testing, a prophylactic mastectomy the other side and reconstruction to both sides. Still on Tamoxifen and enjoying the hot flushes:)
Treatment is harsh but doable.


Hi lavendersun, I was dx in July 2012 and have completed chemo (6 FEC-T) done 3 of my 18 Herceptin, have surgery next week before rads and tamoxifen. So far the Herceptin has been fine :slight_smile: May I ask why you’re worried?

hi caroline 60
nice to mert you.
i will read uo on the trial are you doing it?
cant type much right niw as my kids hogging laptops and im typing in phone which i hate.
speak soon


hi lavendersun, I was dx Friday 13th June 2008, a date I wont forget! Had multifocal loblar er/pr neg her2 pos with 2 out of 4 nodes. I had a left mast.with immediate reconstruction and then had 3 FEC 3 Tax 25 rads and the wonderful herceptin. I have yearly check ups but no further treatments. I can remember how frightened I was at the beginning, still worry it will come back, but fingers crossed life has been good to me. My eldest daughter got married on the 27th December and I can remember thinking I would not be here to see it. It was a hard year during treatment, the chemo wasn’t as bad as I thought, one week out of three feeling like I had flu, and I had the herceptin at home with few side effects. I hope your treatments go well and my only advice is to be kind to yourself, accept any help given and dont try to be a superwoman and accept some days will be bad but they will get better. I dont often post on here but still come on and your post touched a nerve with how I was feeling at the beginning of my treatment. best wishes

Hi lavendersun, I am considering the trial, my consultant is very keen and positive about the research. On balance, I have been told 6 months is as effective as the 12 months. I am seeing my oncologist on the 16th to discuss if i want to take part. I have kind of made up my mind and think I will take part in the trial.
I am not sure where you are in the country - Im in London.

Hi Lavendersun,
I was diagnosed March 2012, 9mm IDC, Er 6/8 Her2 + Grade 3. Had 4x EC and4 x Tax 19 rads and just had my 10th Herceptin and am on Tamoxifen for 5 years. A lot of the info about Her2 on the net is pretty out of date, I know I’ve read most of it lolol. Treatment isn’t nice but certainly doable.

Hi Lavendersun,
I was diagnosed in September 2011 and was er+ and Her2+. I started chemo in early November after surgery with 3 Tax and Herceptin, then 3 FEC and resumed Herceptin in March and have just completed my 17 doses on 10th December with no side effects apart from the runny nose. I am also on a trial (SOLD) which is looking at only 3 H with chemo against another 14 after chemo. My onc thought it was better to have the 17 rather than just 3 and I am happy with that.

Also interested to know why you are so worried about being Her2+. It is a more aggressive cancer but there are new treatments coming up all the time: the latest is Perjeta, I think.

Please don’t worry about being Her2+ and take care, Liz.

Hi girls
I was so thrilled to hear from so many of you in a similar boat to me. Its good to hear i,m not alone!
though of course non of us want to be here. Thank you so much for words of encouragement when you are goung through it too.
Caroline60 thank you for advice I will look into trial for sure . I,m in Surrey we can get to central London in an hour from here.
Princess good to meet you. May I ask why you also had mx on the other side?
To those of you who asked why i,m worried: All i,ve ever read about her2 is aggressive, high chance of reoccurance, chance of mets. I,m scared of leaving my kids with no Mum. I,m one of these glass is half empty types a huge worrier. I,m a woos!!!
Thank you Butterfly61 I know theres lots out there for us just need to be positive and believe.
Ok take care Be back soon xxxx

Forgot to mention when I contacted you earlier but my hospital offers some complementry therapies - massage, reflexology, aromatherapy etc - for cancer patients. It’s funded by the hospital charity and you pay £5 per visit. I’ve been having reflexology since I started the chemo and it is wonderful. Sometimes the effects last only half and hour, other times a week. It gives you some me time and it’s great to feel completely relaxed even if it’s only for a short while. Ask your breast cancer nurse if there is a similar arrangement in your area.

I am her2 positive (also ER+). I have had lumpectomy and SNB (4 nodes taken and all clear). Finished chemo just over a week ago (3xFE and 3XT). Had my second herceptin with my last TAX and had a reaction so it had to be stopped and they tried again the next day giving it to my at a much slower rate (over 3 hours) along with some antihistamines and steroids. I was fine this time.

I too have been offered the trial but my thinking is that you always have the choice to stop taking the herceptin after 6 months anyway, whereas if you get allocated only 6 months by the trial computer you can’t then go back to having 12 (although I think they can’t make you stay on the trial). Given that some people have very few problems with herceptin I’d rather have the option of the full treatment and see how I go. It’s funny because when I told the trial nurse this she said no one had ever pointed this out before but that I was absolutely correct - of course you can stop treatment whenever you want, it’s your body. Some initial figures suggest that 12 months might actually be more effective in the longterm and there have been some discussions as to whether to discontiune the trial based on this (although ultimately the ethics commitee decided against this). I have also heard that some oncs have asked their patients to discontinue the trial as a result.

Something like 20 percent of all breast cancers are her2+ so that is 1 in 5 of us. Herceptin does make it a longhaul treatment but at least we have the option of that treatment now.

Nicola x

Thought I would just chip in with my story as I saw your post. I don’t much post now being 2 years past dx and 1 year past all treatment.
I was dx in Nov 2010, er+, pr+ and Her2+. My tumour was 4.5cm but luckily no nodes involved. I had chemo to shrink first to avoid mx. I had 4 x AC and 4 x Paclitaxol and had them dose dense (2 weeks apart, not 3). I started Herceptin whilst having Taxol which was hard going with both. I then had surgery (WLE and SNB) and then radiotherapy for 20 sessions. All through this I was having Herceptin 3 weekly.
I returned to work full time about 4 weeks after radio, I work in London and have a 2 hour round trip commute. I juggled going to Harley St for my Herceptin. I used to go on a Wednesday morning, would be there for 9am, have the treatment over half a hour and then dash back to the City for work. I would be usually at my desk by 10.45am.
I only suffered minimal side effects from the Herceptin - everyone seems to have the runny nose, and for a couple of days after everything was a bit more hard work, but nothing much.
My advice would be try to take your treatment in blocks and not think about the whole thing in one go. The thing with being Her2+ is that the treatment is long haul, that’s what some people tend to forget. Once I went back to work most people thought I was “over it” not realising that a big part of Herceptin for early stage BC is to ensure that it doesn’t recur and that it is for prevention for the future, like an insurance policy.
I know it is hard, but you will come out of the other side. I remember Christmas 2010, having just had chemo, wondering if I would see Christmas 2011. Not only did I see Christmas 2011 but have just got through Christmas 2012 and am (as far as I know) healthy and happy.

Hi Lavendersun, you can telephone MacMillan cancer nurses re the trial. I have opted for a mx on my left breast as I had 2 cancers in 2 different areas of my breast. I live in Bromley - and can also get to London reasonably quickly. Guys Hosp at London Bridge do a Thursday appointment for wigs - and headwear. I have made my appointment.
You can send me a message privately if you need to meet up.

PS I am a worrier - however I have stopped worrying since my oncol advised he was going to cure me of this cancer!!!

Hi Lavendersun,
Another one here. Dx Feb 2007, 3/16 lymphnodes, grade 3, mx, 4 x FEC, 4 x Tax, 4 weeks radiotherpay, herceptin. As someone said, it is all a long haul, but you will get through it. Here I am nearly six years on and fit and well.
One thing about herceptin they often don’t tell you - after several months (six to nine) you may get increasingly tired. This is quite normal, don’t worry. It will pass after you have finished the herceptin.

Thank you so much for all your lovely posts and words of advice.
Near me there is a Cancer Centre thst does treatments, replexology, aromatherapy etc it coffee mornings tai-chi, art classes. It looks good and I hope to join in the New Year once recovered from Mx.

Roadrunner 2007!!! Wow you give me such hope,. THANK YOU XXXXXX

Caroline60 thanks for info about Guys hospital wigs etc. I will look into it more when recovering from MX and have more time on my hands. I live in Coulsdon so not that far from you at all.

Well heres to a healthy 2013 AND MANY healthy YEARS TO COME FOR ALL OF US.


Oh wish me luck MX and reconstruction on the 4th Jan. HAPPY NEW YEAR TO ME!!! Lol !!!

Hi Lavendersun, happy new year to you too. And good luck for your mx and recon on Friday. I have my WLE and ANC the same day so I’ll be thinking of you :slight_smile:

By the way, I’m not sure how old you are, but you talk about not wanting to leave your kids without a mum… I have a 15mo, and I know how you feel. There is a great Facebook group for under bc sufferers, which I belong to and i’ts great. I’ll try and find the link for you so you can have a look…

hi swoot
my kids are big 12 and 13 but still need their mum. i just love them soooo much
wow it must be really hard with a baby to take care of too.
yes i use fb so that link wd be good though my kids dont know the full pictute yet i
have to be careful mg son seems to know all i do online!!

good luck with your wle etc. i had that all 4 weeks ago honestly it eas fine. i was sitting up in bed eating toast
an hour latervand went home soon after. i was fine after a couple of lazy days on the sofam will b thinking of u. xxxx

sorry about spellings. i can spell but cant type on my phone. must have banana fingers!! xx