HER2+ and ER+ adjuvant chemo and Herceptin. Why??

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Hi everyone,

I hope you are all doing ok. I've had my mastectomy and implant reconstruction now and received initial results back from the surgeon. My nodes/margins are clear but I did have largely high grade DCIS and a small 2mm of invasive ductal cancer which is er positive (4/8) no idea what that means!! and HER2+. I've been referred to oncologist but they can't see me until the 1st of August. Surgeon has said I'll need chemo and Herceptin but not radiotherapy. I've tried to do some research into stats etc and everything seems to say I'll have to have chemo for a whole year and the Herceptin. When I was first diagnosed they said chemo unlikely and they didn't find anything new during surgery, so I'm confused as to why the change. I'd thought I'd just go on the hormone tablets. I'd be grateful to hear from anyone who has experienced similar and timescales etc. The risks of heart issues with Herceptin and chemo etc seem a lot! Thanks in advance. Xx

  • Hi I went through something like you except mine was lumpectomy and radiotherapy further on. The treatment they are likely talking about is Kadcyla or TDM1. It’s given to ladies who had residual tumour cells after surgery. I had it for one year with tiredness only as side effect. It’s a very clever treatment, takes 30 mns to go in IV. It’s 2 drugs, chemo and herceptin. One carries the other to the cells and the other kills them. Mine finished last year, you will be fine, just remember every time you get it, it’s killing the wee rogues 

  • Hi      

    my treatment story is on my profile click on my name to read.

    My diagnosis was in 2019 exactly 4yr last week was my MX like you treatment plan changed after op biopsy diagnosis of DCIs grade 3 Her2+

    Er positive means estrogen receptive which mine was not so I can’t talk bout how that is treated .

    All I can talk about is my treatment which is personalised as yours will be ….all depending on types of cancer any background health issues ,age etc etc .

    I was told unlikely for chemo then results showed Her2+ so informed I would need chemo and app. Made for oncologist It was explained to me that I would have chemo to make sure no rogue cells then I could have Herceptin which targeted Her 2 and reduced risk of recurrence 

    Chemo was three weekly x 6 sessions bout 5 month 

    My Her 2 was treated with Herceptin injection into thigh every 3weeks ( I had 18 ) so about a year . 

    wont say chemo easy but is doable 

    re heart issues I had heart scan prior to Herceptin then regular scans to keep a check . It was explained to me that it could cause a reversible damage which they would monitor and cease Herceptin if needed . 
    Hope this helps 

    Write down all your questions for oncologist and if they not answered by end of discussion ask them oncologist won’t mind they want you to be comfortable with treatment 

    just remember no such think as daft question except the one not asked Joy 

    take a friend with notebook to meeting so info and answers can be written down 

    One step at a time and ...Breathe !
    xoxox
    Margaret
  • Thank you for replying. There are so many treatments and options it makes my brain hurt!! I'm going to start a list of questions for my appointment with the oncologist so I don't forget. Good to know there are options .Take care xx

  • Thank you, Margaret. It sounds like you've been through a lot. I appreciate you taking the time to respond. There's so much information and I'm not the most patient person and the 1st of August seems like such a long time to wait. I'll have about 1000 questions in my notebook by then! Hopefully, I'll not need chemo for a full year. Take care xxx

  • Hi there

    I had a similar diagnosis, 60mm, high grade DCIS and 10mm, grade 2 invasive part. Mine was HER2 + and ER+. They offer treatment for HER2 as it is considered to be a slightly more aggressive with higher recurrence rate. They treat it with Herceptin which is given with a chemo drug. They do tailor your treatment so my current treatment is 12weeks of Paclitaxel (chemo) and 6 Herceptin injections every 3 weeks. The injections will continue after the chemo is finished. The Paclitaxel is manageable, fatigue is my main side effect. I was hesitant about treating the her2 part but recurrence was the decider for me, there is no guarantee but I want to limit my chances of having to go through this again. It has already consumed most of 2023!!! Best of luck, I am sure your oncologist will explain your options and allow you to make the best choice for you. 

  • Hi, like you I am Her2+ Er+, following 6 rounds of chemo and Phesgo injections I had a lumpectomy and axillary clearance which showed a 13mm residue of cancer cells although margins were clear.  I had 5 sessions of radiotherapy and am currently 7 rounds into a total of 14 rounds of Kadcyla.  I have not had any significant side effects from the latest chemo and it only takes 30 minutes plus flush time.  I had a bit of a wait before starting Kadcyla but was told by my oncologist that unlike radiotherapy it was not time limited.  I have 3 monthly heart scans which so far, have all been good, despite having a heart murmur, next one due next month so fingers crossed.  Hope this helps and wishing you all the best for your ongoing treatment, big hugs. Xx

  • Hi, thank you for replying. It's good to get an idea of the different approaches and timescales. I agree, I'd want to try and do what I can to try and avoid the cancer returning. It sounds like you've had the full range of treatments and I hope the rest to come go well for you. Get lots of rest and sending hugs x

  • Thank you for replying. It's so helpful to hear about other experiences and treatment approaches. I'm calming down a bit from the initial shock and feel better armed for my appointment with the oncologist. Hope everything continues to go well for you. Sending hugs x

  • I think it is because you are HER2 positive. Take a look at cancer active and yes to life websites to find out how to look after yourself through treatment and to get the best outcomes. I wish I had found these websites sooner. It is such a shock to find your treatment plan has changed. I hope you can find the best way through this for you and that you have lots of support on the way xx