HER2+ without chemo

I was treated earlier this year for ER+ and Her2+ cancer - 15mm lump; no nodes and no other spread. I had lumpectomy and radiotherapy and went straight onto arimidex. I could have had chemo and herceptin because of the Her2+ but with all other factors being low risk my oncologist thought benefits would be tiny and I agreed. Herceptin without chemo was not an option.
There has been some publicity in the press lately about the bad prognosis for Her2+ patients, though I understand that most Her2+ folk have more advanced cancer at diagnosis and would need chemo anyway.
I can’t find anything about the outlook for people like me. Are there any more of you out there? It would be comforting to share experiences. Physically I feel well, but I’m finding the Her2 issue hard to live with right now.

Hi Christine1505
I was diagnosed in July and surgery followed soon after. Results confirmed that my cancer was both oestrogen and HER2 positive. All 17 lymph nodes were clear and the margin was also clear around the tumour. I am currently undergoing FEC chemo because of the HER2 positive. After 6 sessions of chemo I will have 25 sessions of radiotherapy and a year of herceptin and hormone therapy as well, I was under the impression from my onc that if the HER2 test was negative then I would not have chemo. I am only 40 so I am having any treatment that they throw at me. I’ve got 2 kids, 11 and 8 and want to see them grow up.

Hope this helps.

Take care,

Angela

Hi Christine
If you would like to talk this through please feel free to contact our helpliners on 0808 800 6000. The helpline is open today 9am-2pm and Mon -Fri 9am-5pm.

Best wishes
Lucy
Moderator
Breast Cancer Care

Angela

I am her 2 negative but am having chemo followed by surgery then rads. I am 39, am also ER -ve and PR -ve so these 3 treatments are all they can throw at me. I think my age and because it was stage 3 aggressive came into the decision very much.

Hope this helps
Fiona

Hi Christine
I am also er+ and her2+, 25mm tumour, lymph nodes clear, I wasn’t offered chemo so couldn’t have had herceptin even if I’d wanted. I had a lumpectomy in April then radiotherapy and was put on Arimidex. Unfortunately, the Arimidex really disagreed with me, I ended up losing 10 lbs and was slim to start off with, I was deeply depressed (not at all like me) had terrible pains and wasn’t sleeping. My onc nurse suggested I come of them in December which was a huge relief. I’m just beginning to feel like myself but am still not managing to put the weight back on. I see my onc on 8 Jan and I’m expecting him to suggest a different tablet which I will try BUT if they start to make me feel dreadful I shall stop taking them and just keep my fingers crossed. The question I want to ask my onc when I see him is, if my cancer does recur, will it always be er+ and her2+ or can the her2+ side of things on its own cause it to come back - does that make sense. I am 69 so am perhaps a lot older than you. I get the impression we older ones aren’t offered such agressive treatment as you younger ones, not that I would want to have chemo. As you say, her2+ is more worrying than just er+, but I’m sure your onc team will have taken everything into account and decided that the treatment you are having is the best in your circumstances. The fact that your lymph nodes are clear is a very good sign. Wouldn’t it be great if someone could say to us ‘right, we’ve taken the lump out, everything’s clear, you’re cured’.

No chemo or herceptin for me either - dx stage 1, ER+/PR+/HER2+, no nodes, no vascular invasion and am postmeno.

I understand that recurrences usually maintain the phenotype, but it is possible to become HER2+ when you were HER2-, although rare the other way round.

Hope this helps.

Mcgle

Hi Christine
i am in a similar situation. had lumpectomy for 1.4 tumor and sentinel node biopsy. The lymph nodes were clear but found two more spots in margins so suggested mastectomy. i was told because now having mastectomy i didn’t need rads gt go for it i said. Also due to not needing rads i could have immediate reconstruction even better. I did on 6th DEC but when went for follow up with consultant i saw a diff one and he said thinks i benefit from chemo and herceptin as her2 pos. This wAs first i had heard so frightened me. my actual consultant says its over treatment and wouldn’t make any difference to me in long run. Who do i believe. I have gt trust in my consultant as hes done a gt job on me so far. I have now got apt with oncologist next week to see what he says… of course i don’t want chemo but in a way will be hurt if not offered it now… Reading your post makes me feel there are others in same pos as me so i don’t need it. i wonder what statistics are further down the line ones who have had it and ones who haven’t… we will never know. i was happy not having it but now if don’t will i be thinking of bad things all the time… sorry to go on julie xxxx ps forgot to say i am 49 and still menstual dont know f amkes any difference.

At my initial diagnosis I was ER+ but not HER2 but was given chemo and was pre-menopausal at the time. There are a lot of people who are HER2- who will still receive chemo but I know in our hospital that if you are HER2+ they give chemo and Herceptin as a combination rather than as a stand alone of each other as they feel you have a better chance of things improving.

None of us know what might have happened if we had gone down a different route - I’m convinced that being on Tamoxifen for nearly 10 years stopped my cancer from coming back earlier but would I? It’s something I’ll never know!

Pinkdove

hi jal7777

I can sympthaise with your position - I have a completely different bc problem from you but i also got mixed messages regarding treatment and it is very very upsetting - verging on derailment for me!.

I do think that you should consider all the facts - not just from the person whom you trust so far …

a long time ago I had an undiagosable problem in my tooth - it turned out the tooth had a crack in it the whole tooth was split in 2 - from root to crown - invisible when my mouth was open - but the whole tooth opened when my mouth was shut and when i chewewd - i was in agony - i went to 2 dentists and they didn’t find the problem. The third one did - and i trusted him implicitly. i then developed another dental problem - and he told me what he thought and i believed him - i was in a lot of discomfort for a couple of years and even ended up having an operation - to no avail. He then retired and i had a new dentist - who told me that my “failthful” one was incorrect - and he fixed the problem in 2 hours.
What I learned from this experience is that i will always be open for a seond opinion - and hope it agrees with the first - obviously an issue if it doesn’t …

You must be desperately worried - I got myself in a state about bc and decided the only thing worse than having chemo was NOT having it if you need it! Problem is knowing if you do really need it.

At the end of the day it’s your body … and your life …

I hope this has been of some help - i’m not saying (as have no idea) who is right - I just thing you need to get as much fact as possible rather than just feeling emotionally secure that the chap is correct. Perhaps you could find some other statistics relating to this? May be a bbc nurse may know what is available?

If I have made you more confused then I apologise - let me know
Good luck everyone
FizBix