HER2 positive

Hi just wondering if anyone else on here has been diagnosed with being HER2 positive and how has treatment been or gone for you ? I’m slightly nervous that I have just been told that I am one of the few that are this . I have been diagnosed with grade 2 breast cancer with some  lymph node involvement .

  • Hi, I haven't had my HER2 results yet but the doctor said if it was positive they would consider chemo and ?herceptin ( this is what I think they called it) first to shrink tumour before lumpectomy x

  • Hi , yes I will be having chemo and treatment to try and shrink it first , I’ve 2 small ones ( caught early) one is 9mm and one 16mm .

    I think I’m just more worried about outcome for now now I have that result and that they will be doing chemo before just removing it .

    The nurse did explain why they will do it this way but it still makes me panic that I won’t get through all this .

  • The worry of waiting is awful.  I just cling to the fact that the docotrs know what they are talking about.  I have to have an MRI scan before they will operate, then if HER2 is positive another delay with chemo.  Doctor.said time isn't as important as making the correct plan, so have to keep faith in her x

  • Hi Dawnlou

    I had HER2+ tumours, have a look at my profile.  I had chemo followed by Herceptin injections plus a mastectomy. Chemo reduced tumours but not completely, however the Herceptin injections did get rid of them. Unfortunately, I also was told somewhat down the line that I had an oestrogen positive tumour too. This was only completely lost when the breast was removed. I am now on exemestane which I take about for 5-7 years. The chemo is doable and the injections were by comparison a walk in the park. The bit I most resent is the ongoing exemestane, the ongoing side effects have made me feel 10-15 years older than when this all started.

    Try not to be too nervous, there are good drugs out there for HER2+

    Good luck x

  • Hi thank you for reply . One of mine is also oestrogen so will have to take hormone treatment .

    I am a single mom to 4 young children so I think my panic is that I won’t be there for them even though the nurses have been very positive .

    I have my mri, bone scan and ct scan all on Tuesday and that’s worrying me incase they find something but the nurses have said there is no indication that it has spread elsewhere but I don’t think my head will relax until after the scans .

    The cold cap was mentioned to me but can’t decide what to do 

  • I am HER2 positive, diagnosed back in February. I had chemo first, 6 cycles of EC-T and then surgery. My tumour was grade 2 on biopsy and 2cm. I had a full pathological response, no sign of any cancer from the surgery and no sign of spread. 

    Im having targeted treatments of Herceptin for a year and will be having radiotherapy. HER2 positive cancer is really treatable now so you will be really well looked after and they will do everything they can to make sure it goes. 

    Take care,

    Ruby xx

  • Thank you so much for your reply . I have been told so many times that grade 2 is very treatable and have really got to start to believe it . I think my panic with the HER2 positive is that it can be faster growing and even though I am fit and healthy and have no reason to think it has spread it still panics me  it has because there are a small amount in my lymph nodes 

  • Hi yes I was diagnosed HER2 + stage 1 grade 2 DCIS breast cancer my oncologist said its treatable and that's what I focused on throughout my active treatment .I had breast conserving surgery first(February 2021) then chemotherapy paclitaxel once a week  for 12 weeks (April/June ) along side herceptin injections every 3 weekly (still ongoing) 5 days of  radiotherapy (July ) and now tamoxifen for 5 maybe 10 years hope this helps my lymph nodes were clear but the tumour was growing fast  I was lucky no sickness domeperidome is amazing anti sickness drug whatever they give you take it even if you don't feel sick. I did lose my hair but not until week 5 I shaved it after that it felt like I was in control more after that as weird as it may sound .remember to take each treatment as it comes sleep if you need to be kind and patient with yourself eat what you want. I found my taste changed during chemotherapy I have a lovely team at the unit and have made some amazing friends through chemotherapy I am now 12 weeks post chemotherapy my  eyebrows and lashes have come back I love my hair colour (silvery grey ) now I jave a full covering of hair now so I don't need to wear any caps or scalves if I don't want to . Sending love and luck for your treatment whatever it may be there is light at the end of the tunnel you will get through it xx

  • Hi Dawnlou - I was Her2+ - stage 3. Diagnosed at the beginning of last year. I was terrified at the outset. I had to have chemo before surgery (some people have it after). Overall, I found that nothing was as bad as I thought it was going to be. I had chemo, surgery (full mastectomy and lymph node clearance), radiotherapy and completed Herceptin and Perjeta treatment in June. I had TCHP chemo - Taxotere and Carboplatin with Herceptin and Perjeta. Pleased to report, it was very effective and I had a 'complete response' - meaning no cancer was found when they tested bits removed at surgery. I feel almost back to normal - a bit lethargic some days and still worried about covid. I will be thinking of you. x

  • Hi 

    I have lobular cancer - ER/PR & HER2 positive. My tumour was grade 2 and the 3 lymph nodes removed were clear of cancer. 

    My surgeon told me lobular cancer doesn’t respond that well to chemo first so I had a lumpectomy in August and have my first chemo on Friday. Because I’m HER2 positive the magic drug is Herceptin and that can only be given alongside chemo apparently. So the chemo is a mopping up situation.

    Im not looking forward to the chemo but by early February it will be over. Time goes so fast and so many amazing people have done this before me, if they can do it so can I.