HELP... Advice needed HER2+?????

Hi All,

Not long been told that I’m HER2+
I’m getting alittle confused with advice…
even though oncologist was good - I dont think it all sunk in so I think I am getting myself messed up!
When I had my 3rd Chemo yesterday the first thing the nurse did was give me a hug - why is the HER2+ really that bad.

Please can anyone advice me… what am I to expect. OH getting really upset too as he does not understand either,… Help

Much appreciated

Mel & long suffering OH
XXX

Hi Mel

As I think explained to me. Hormone recptive - good- tamoxifen etc.
HER2+ - bad - cancer cells divide and spread more quickly. Good news about HER2+ is that it responds to Herceptin, so you’ll probably get Herceptin every 3 weeks for a year

Hope that helps

Marilyn x

Hi Mel,

Don’t worry - it’s really not all bad news. I am HER+ and ER+. I don’t think it’s nearly as black and white as good/bad before you start getting very worried. Basically, yes it does mean a more aggressive kind of cancer. BUT with Herceptin we are put back on a level playing field with people who are HER-. In addition with all the trials/tests etc no one fully know what other effects Herceptin may be having to help your own cells fight any cancer in your body.

Basically the way my onc described it to me was an an extra insurance I wouldn’t normally have had to try and make sure it doesn’t come back.

xx

Hi Mel

I am sorry that you are feeling confused and concerned about your diagnosis. It might be a good idea to give our helpline a ring, they will hopefully be able to clarify some of your concerns and ease the confusion.

The helpline number is 0808 800 6000 and is open Monday to Friday 9am-5pm and Saturday 9am-2pm.

Kind regards.

Louise
Moderator
Breast Cancer Care

hi mel

the nurse might hug everyone like that - im her2+ and am going to have herceptin half way through chemo-if you look up info on herceptin and early breast cancer the outcome is really good, so try not to worry to much - which isnt that easy i know - at least we have herceptin on our side

Thank you for all your kind words - I have done alittle research but trying not to look to deep - too scary…

As you all say at least we knoew have Herceptin!!

Take care all
Love, cyber hugs and wishes

Mel

xxxx

Hi Mel,
sorry you are feeling so het, as others have said it really isn’t that bad now, when I was first diagnosed in 04 it was just called aggressive and it wasn’t until the cancer returned in 05 that they tested for her2. then I was put on taxotere and herceptin which has really sorted things out. So good luck with your treatment

xxx

Hi Mel,

when I first found out I was HER2 + I was devastated and cried loads. Initially I thought I was being issued a death sentence as I knew it meant my tumour was more aggressive and rapidly growing than a negative one.

Then I did some research and I totally calmed down about the whole thing! I rang the bcc helpline, then I spoke to my BC nurse and also my trials nurse. Turns out it wasn’t the doom and gloom that I thought it was! Herceptin is like our ‘insurance policy’ I was told. I was also told that by having Herceptin every 3 weeks for a year puts us on an equal footing with those who are negative.

I know that many women campaigned tirelessly for a long time to make Herceptin available to all who need it, and for this I will be eternally grateful. Its just one more thing we can use as ammunition! Its something else that we can hit these little bu**ers with!!!

Take care,

Kelly
-x-

Hi Mel
Her2+ used to be relatively bad news, but with Herceptin the stats are really excellent, up to 50% improvement in preventing recurrences!
Other good news is that as Herceptin is not a chemo drug, the side fx are negligible & these are carefully monitored.
Also, if you read up about what it is & what it does, it’s really cutting edge stuff - monoclonal antibodies!
Good luck & stay strong

Just to add - I too am Her+ and was initially very upset. Now I , like Kelly thank all those women who have tread this path before and shouted loud for the Hercptin. I remember seeing them on TV at the time and thinking - poor women - now I am in the boat and glad that I don’t have to fight as I don’t know that I would be strong enough. I am told that it is a great drug - so again I put my faith in those who look after my care.

MuddyXX

Hi everybody - When I was told I was HER2+ and I could have herceptin I was really pleased UNTIL a couple of weeks ago it hit me that I am having it because my cancer was/is aggressive. Nothing was explained to me at all. I was just told the test had come back HER2+ and that I would have herceptin and I thought well that’s a good thing. Yes it is but didn’t realise the full extent of why I was having it and it clicked with me and sent me on a downward spiral.

I am seeing the onc tomorrow when I start my tax (had FEC) and will ask for full explanation. Feel let down sometimes with the BCN.

Brenda xxx

I am also HER2+ and am on Herceptin until next May. I had a fibroid measuring 42mm by 26 mm which was removed as a day surgery - it was hiding a Stage 3 cancer which had spread to 1 of 22 lymph nodes. Whilst I have always been fully aware that this type of cancer is agressive and serious I have tried not to let it get me down. Back in February my onc told me I had a very good prognosis, I also have a relative who is an onc and he has said the same thing as Herceptin is the gold standard; I was also told the same about Taxotere. I had a health wobble at the end of chemo in June as I ended up in hospital neutropenic and with a bad chemo burn to my hand. However, I’m now feeling fit and well and about to embark on 2 courses as I’m retraining and hope to become self employed.

I do a bit of yoga and meditation and find this helps with my overall feeling of wellbeing. It’s very calming and makes me feel very positive about the future. I feel I have left a former life behind and something new and exciting is starting.

I asked the oncologist yesterday to explain to me exactly what HER 2 was and what the pluses meant. I was only told I was HER2 positive but no explanation really of what it actually meant BUT that I could have Herceptin. I told him that I was very depressed when it sank in. I didn’t tell anybody why I felt down.

He explained that HER2+ is negative, HER2++ is borderline and if its this they do a test called a FISH test, not sure what exactly that is but HER2+++ is positive and that the Herceptin is a good thing. I do have every trust in the team and just go with it. I had my first Taxotere yesterday and up to now just the mouth is starting. So I am now 4 down 2 to go. Then 5 weeks of radiotherapy and a year Herceptin. Will we ever feel normal again. - I don’t think I will. I will try to but not sure my bubbly character will remerge !!!

Love to you all

Brenda xx

I , like Brenda was told I would be able to have herceptin and I felt to lucky as I knew that women had fought for it. I was dx as her2+ in December. No one told me that it was bad and it was months before I realised it wasn’t particularly good news. In fact it is only this last month or two through reading the posts on here have I realised that the cancer is very aggressive. Very p–sed off this last few weeks and am very depressed Love to all Eileen

I thought that this news might cheer some people up. In a recent trial, they discovered that women with her2 positive breast cancer had about 40 percent fewer recurrences when they received a taxane, taxol. For the full story see: nlm.nih.gov/medlineplus/news/fullstory_55985.html
Taxotere, which alot of her2 positive patients now get, is also a taxane and works along the same principles as taxol, but it is very new. I got taxotere way back in 2004 but only because my oncologist was really clever (and also really scared because pre-surgery FEC had failed to do much).

The benefits of taxol/taxotere may not be quite the same for us because most of us will have had FEC (which did much better than AC in the only trial conducted to compare them) and herceptin, but it does indicate that perhaps we have more going for us.