Recently diagnosed Her2 positive breast cancer

  • 4 replies
  • 467 subscribers
  • 318 views

Hello, following a routine mammogram in August, when I was feeling fit and healthy, I was diagnosed with breast cancer on 8th October. It's all been a terrible shock. I was told it was early stage (14 mm) grade 2, Her2 positive and ER negative. I was offered a cancellation for a lumpectomy operation, which I had on the 14th of October, so things have moved very quickly after my diagnosis. I got my results over the phone last week, but was so nervous that I didn't really absorb all of what the consultant said in terms of next steps. The good news was that they removed the tumour with clear margins and there was no spread to my lymph nodes. But because my BC is HER2 positive I know that I will have to have chemotherapy, Herceptin (or a drug like that) and also 5 days of radiotherapy after chemotherapy. I can't remember if the consultant said I needed to have 6 or 8 cycles of chemotherapy. ad this is really bugging me. My appointment with the oncologist isn't until 3rd December so more waiting tto fins out about my chemo/treatment plan that I'm finding very difficult. Has anyone else here had early stage HER2 positive BC and a lumpectomy - and if so, what was your treatment after this? Did you have 6 or 8 cycles of chemo? I've got a family history of BC, my mum died of breast cancer when she was 44 (I'm 63 so at least have had a bit more time). I'm also anxious because my son is graduating at the beginning of July and I'm so hoping I'll be well enough to get there. And I'm assuming my chemo will start before Christmas, so trying to work out how that will work out in terms of seeing family. Any advice/experience of others would be really appreciated.

  • Hi

    Sorry about your recent diagnosis but you are not alone. I was HER2 positive and also ER/PR positive. I had a lumpectomy followed by 6 chemotherapy treatments, 3EC and 3 docetaxel. Herceptin injections were administered during each docetaxel chemo and continued every 3 weeks thereafter. I had 18 in total. They didn’t affect me at all. I also had 9 radiotherapy sessions. My chemo was August to December last year and I had radiotherapy in January of this year. I would say you will definitely be fine by next July. As regards mixing with family etc over Christmas, just be mindful that chemo lowers your immune system so you are more likely to pick up colds etc. I decided to keep my distance…it worked for me! You will have good days and bad days. Take any meds they give you and don’t be afraid to ask for help. Drink plenty of water after each chemo to help flush it out. I am 62 but was 61 when diagnosed.

    all the best 

  • Hi

    Sounds very similar to me - stage 1, grade 3, HER2+,15mm tumour plus some DCIS.

    I was 61 when i was diagnosed in October last year.

    It’s great you’ve had your surgery so swiftly and that your margins were clear - such good news

    They will want to wait until at least 6 weeks after your surgery before the chemo starts - in the end with Christmas I think mine started about 8 weeks post my lumpectomy.

    I had 12 weeks of weekly Paclitaxel, 3 weekly Herceptin for a year, initially Zoledronic Acid every 6 weeks and now every 6 months and that will go on for a total of 3 years.

    When I finished the chemo I had 5 days of radiotherapy

    Although it’s daunting, the chemo was nowhere near as dreadful as anticipated. Yes I was wiped out the rest of the day each time I had treatment - and I was pretty low energy for the 3 months, but apart from that my only side-effect was hair loss - and it started growing back pretty quickly once I finished the Paclitaxel

    The Herceptin is no big deal at all - I think I’ve got 3 or four of these left to do - my surgeon says this drug is a complete game-changer in terms of addressing HER 2+ cancers

    The ZA makes you a but flu-ey the first time but it’s not a big deal - you just need to make sure you get your teeth checked by your dentist before you start. There’s a rare but nasty side-effect linked to the jawbone!

    I found the Radiotherapy very easy - though you might see in another post that I think it may have caused some scar tissue issues which we’re just sorting out

    So on balance - just go for it. I saw my treatment as an investment in my future. Be kind to yourself, drink lots of water, and get out for even a short walk every day if you’re able

    Very best wishes 

  • Thanks so much for your reply, which I found very reassuring. I've got myself into a bit of a panic with thoughts of the chemo ans uncertainty about when it will start, so hearing your experience has been really helpful. So much to learn in terms of different drugs and terminology too! Best wishes to you for the future

  • Thanks so much for your reply and for sharing your experience. I'm feeling very scared about the thought of having chemotherapy so hearing stories from people like you who have got through it are so helpful. Thank you