I was diagnosed about 6 weeks ago with grade 3 breast cancer in the left breast. I’ve already had mastectomy and started fec-t chemo last week. Margins were clear from op but there was a large area of pre cancer cells and 4 small tumors (biggest 1.8cm others very small) and the cancer had spread to 2 lymph nodes (removed 12 other 10 clear). I’ve been told I’m her2 positive which was a surprise as my nurse had previously told me I would have tamoxifen. The onc confirmed I wouldn’t but would have herceptin instead. As this was all new info I hadn’t read up on it and didn’t have any questions for my onc about it. I’m hoping I’ll see her during my chemo at some point for more info but not sure when this will be. I’ve read bits on the internet and a lot of it has worried me. Does anyone know any good websites that they could recommend or any advice/info about being her2 positive? Thanks Rachel xx
Hi Rachel
sorry to hear of your diagnosis…not something any of us want to hear
The Macmillan site is good (link below)
I am also tprescribed herceptin
Just to say you only have tamoxifen if your cancer is oestrogen positive which causes it to grow…the tamoxifen stops the body making oestrogen …so if you are not positive it would not be of any benefit to you…it sounds as though your cancer is only her2+…possibly the BC nurse commented before the results were back?
The herceptin locks on to the HER2 protein and blocks the receptor and stops the cells from dividing and growing .It’s given to reduce the risk of the cancer coming back and increase the chance of a cure.
The herceptin is given every 3 weeks via injection into your leg …usually 18 sessions in total
When the first dose is given…you have to stay on the unit for 6 hours to ensure you do not have any adverse reactions. You also have to have heart scans to ensure your heart is coping with the herceptin …usually every 3-4 months…
Hope this helps a bit xxx Donna
Thanks for your reply Donna. I think the nurse was taking notes at the consultants weekly meeting and must have misheard. The onc said I’m definitely only her2 positive xx
Raqchel, I was like you Her2 positive, small tumour but lymph node involvement, not distant spread. I was diagnosed last February and am just about finished my treatment. It is an aggressive cancer but has some of the best treatments. You will be well looked after on the treatment plan which will probably be chemotherapy, radiation and then Herceptin, the wonder drug. I was told that I was on the curative programme and that the prognosis was very positive. Like you I knew little about this type of cancer and like you had been told that I would likely need Tamoxofen. However if your cancer is not receptive to hormones then you wont get Tamoxofen. If you have Her2 then Herceptin is the recognised treatment. I have been in the company of women who started treatment for Her2 over ten years ago. They were unlucky in that Herceptin was not available when first diagnosed which led to secondary status. However they were lucky that Herceptin came available and the drug has worked wonders. So the prognosis is good for Her2 treatments. Be confident in the medical staff, be confident in yourself that you will get through treatment even if you feel unwell due to chemotherapy. You will get through it and by next year you will be on the road to recovery. I read some of the Her2 support group threads which I found very helpful. Try not to read anything pre 2012 as it is old hat. There are some very good stories on line which are inspiring. Good luck during your treatment and a speedy recovery.
Thanks Donna that website is great explains it all well. Thanks for your reply Anne, it’s nice to hear something positive! Glad you’re getting towards the end of your treatment that must be a great feeling. I’ve got a while to go but I’m hoping everything will be over before Xmas. My treatment plan is as you mentioned I haven’t had reconstruction yet I decided to wait until I get through the treatment. I’m worried about recurrence as I’ve read it’s more likely being her2. The first lump I could feel was a small tumour to the top of my breast which was a spread if the main tumour. I was examined by several people before being diagnosed who also only noticed the lump I could feel. I don’t want this to happen again in the other breast I think I’d rather have a mx on that side too. The hospital have told me they’ll examine me regularly and I’ll have annual mammograms, not sure they will give me mx I suppose it depends on how likely it is to come back. Thanks again for your positivity it’s good to know there is light at the end of the tunnel even if it seems a long way off at the moment! Xx