HER2 positive

Hi ladies , its anyone have been diagnosed with HER2 positive breast cancer ? What to expect after MRI? How long takes to hve surgery still waiting for appointment 

  • Hi 

    Welcome to the community I know you'd rather not be here but it is a good place to come for support and answers.

    You can read my story on profile if you wish . 

    I was diagnosed with Her2-positive in July 2019 but I'm sorry I can't really answer your questions I had MX op prior to diagnosis and never had MRI .

    There are a few people on here with Her2 positive I'm sure they'll answer you if they can or just come on for chat . If you can fill in a small bio on profile it helps when we are answering .

    What will happen next can differ according to your teams view on what is best for you ,also size of cancer ,your age all come into the mix 

    I had chemo after surgery then Herceptin now an infusion every six months all of which is on my profile . The point is it's all doable . 

    The point where you are now is the worst that waiting for appointments and your treatment to start it dies get better once treatment starts .

    Have a browse around the site lots of interesting stories . Jump in wherever you feel like you will be welcomed .

    One step at a time and ...Breathe !
    xoxox
    Margaret
  • Hi 

    As. Margaret has said, everyone is treated very differently depending on their own particular diagnosis. I think approx 25% of breast cancers are HER2+, so that’s about 15,000 women every year in the UK, so there are a lot of us about! I was diagnosed in 2016, and even since my diagnosis treatment has changed for HER2+, if the tumour is over a certain size chemo is often given first to try and shrink the lump, plus alongside Herceptin (standard treatment now for this type) there are also other new drugs such as Perjeta. One thing for certain is that you need chemotherapy to enable the Herceptin to work, and this may be before or after surgery. 

    If you are having surgery first, it is usually within about 4 weeks, think the guideline state it should be within 31 days for treatment to start, not sure if things have changed with COVID? Are you having a lumpectomy or mastectomy or not sure yet? 

    it is a scary time when you are first diagnosed as everything is new and can be a bit bewildering - but there will normally be someone around who can answer any questions out have.

    Jo x

  • Hi Anna

    Mine is HER2 positive cancer and from what I can work out, this is good! Because various treatments such as Herceptin will work on it and these are very effective. My treatment plan is 6 x 3 weekly cycles of chemo (including herceptin) making 18 weeks in total,  in order to shrink the tumour. After around 4? weeks recovery I should then be able to have surgery, lumpectomy or mastectomy depending on how much the tumour has shrunk. Depending on how the surgery goes, this may be followed by chemo and/or radiotherapy, plus more herceptin and then hormone therapy.

    That is my understanding of what's in store for me, but as others have said, treatments can vary considerably depending on size, stage, grade and loads of other stuff. When you have your first appointment you'll be given a good idea of what would be the best course for you.

    Loads of luck

  • Hi,

    I have been diagnosed with the same as you just before Christmas, I had an MRI a couple of weeks before my chemo started so they had a starting measurement of the lumps...then 6 chemo treatments. With another MRI after chemo no.3 to check progress.
    I’ve just had chemo no. 4 and have been told I will have an appointment with the surgeon in the next couple of weeks in prep for a mastectomy/reconstruction after chemo 6. then I’ll have 11 more sessions of herceptin.

    I hope that helps a little, the waiting is the worst bit, once you have a treatment plan you can focus on that and no more waiting for the postman! 

    xxx

  • Hi Anna - I was diagnosed last year. From diagnosis to the start of treatment was about 2 and a half weeks. There was a CT scan in between. I had neo-adjuvant chemo because my cancer was stage 3 and inflammatory. Herceptin and Perjeta were thrown into the mix. They are targeted cancer drugs specifically developed for HER2+. I had an immediate improvement in symptoms and completed 6 rounds before surgery. Pathology revealed I'd had a complete response. Starting radiotherapy a week tomorrow. Now I have Herceptin injections at home and only have 7 to go. 

  • Hi Anna

    I to am HER2 positive diagnosed on 10th December, I got an appointment about 2 weeks after my MRI with results and had surgery on 25th of January (2 weeks afterwards) I had surgery first as all tests indicated early stage and a small tumor. Turns out that it was stage 3 with a 4cm cancer but they did a great job, you could never tell I have had a lumpectomy and 3 nodes removed, apart from scars which have healed so well and I have full range of movement with no pain already. Do advise a good non wired bra (front opening) for after though got mine from M&S it really made a difference.

    I have oncology on Tuesday as I have to have chemo, radio and further therapies but tbh I have no clue how many cycles or what drugs until then as I chose not to ask. I'm Trying to deal with one thing at a time as it all gets too overwhelming if I look at it as a whole so I'm taking it step by step. 

    Each appointment can feel like torture especially when you have to wait for test results so you can have your next appointment. Gor me when they had all the information they needed they moved really quickly so I'm sure they will do the same for you.

    I don't think I'm that much further in my journey than you are so please if you need a chat or would like to know anything about my experience so far please give me a shout

    Xx

  • Hi, 

    your bra recommendation is great, Thankyou. 

  • Hi so lovely get msg from ladies who is in a same situation, iam week two after my diagnosis and only now I realised thats its reality.Iam going to see my surgeon on Monday to find out MRI results and then i will have clear picture what will happen next.My lump in breast its 10 mm fibroadenoma as i was diagnosed after mammogram and ultrasound , seems after i had biopsy diagnosis was changed . Grade two revised to Grade 3 . Iam so confused with all of this ... xx

  • Hi Jo, lovely message really make me happy Smiley its very difficult time for everyone who is new with diagnosis of cancer. In the beginning i was diagnosed with fibroadenoma then after biopsy Her2 positive and grade 2 revised to grade3. This brought me in to big confusion. Im going to see my surgeon on Monday as i had MRI already.thank you so much for keep me positive and optimistic!xx 

  • Hi Anna

    I am in a similar situation. I found a lump in November and after attending rapid access clinic was advised that it was HER2+ with at least one positive node. Things moved very quickly thereafter, first a MRI and then a CT. I was so relived that these confirmed what the original mammogram and ultrasound had shown and that there was nothing more lurking!

    My initial instinct was to insist on surgical removal asap. I think it is natural to want to be rid of the problem as soon as. However, my lovely surgeon explained the benefits to me of having the chemo first.

    My lump was 52mm so one aim was to shrink it to give more surgical options. Also, there is advantage in knowing how responsive the cell type is to the chemotherapy and this is most readily done if the tumour is still there and they can see how much it shrinks. I was told that 60% of patients with HER2+ who have the chemo first get a complete pathological clearance with the chemo alone. It was also put to me that if there was not complete clearance, by having the chemo first I would  be eligible for another new drug which would not be available to me if I opted for the surgery first. This was the clincher for me. I did not want to close off any pathways that I might need in future.

    Also, if I had gone for immediate surgery, which they said was a choice for me to make after they had explained all the options/risks/benefits for me, it would have involved a complete mastectomy and complete axillary clearance. 

    I chose the chemo first and was prescribed 6 sessions at three week intervals: 3 x EC and 3 of Docetaxel, Herceptin + Pertuzumab [these later two are targeted therapy specifically against HER2+]. I have just had the 4th dose. 

    I am so glad now that I took this route. At the halfway MRI last week to check what was happening to the lump, it showed at less than half the size it was at the outset and the positive node was also smaller. This was even before the targeted therapy started. So I am feeling blessed that the thing is responding. 

    I see the surgeon again next week, so will see what she says then about what the surgical options are. She did suggest that lumpectomy might be a possibility if there was a good response.

    I think what happens after surgery depends on what the pathology shows in the tissues that are removed. I have been told by oncologist  to expect radiotherapy and Herceptin for either 6 moths or a year afterwards and possibly hormone blocker....

    I will take their advice and do whatever it takes to try to get the best outcome. 

    As others have said we are all different and the treatment plans are tailored individually

    In the beginning the 18 weeks of chemo seemed to stretch interminably ahead. However, feeling the lump get softer even after the first dose and the the MRI confirming the change has given me a great boost. Now just two more doses to go!