My breast lesion is HER2 positive. - My Breast Cancer ...

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My breast lesion is HER2 positive.

Hazelgreen profile image

My tiny breast lesion (4 mm) was removed with clean margins and no lymph involvement. I'm wondering about the treatment others have taken to avoid metastases.

14 Replies

This is definitely one for your medics, Hazelgreen, Other posters may tell you how they dealt with a lesion such as yours. Here in the UK anyone with breast cancer goes to a MTD (multi-disciplinary team) where the case is discussed and a treatment regime proposal made.

Thanks, Rosie! My oncologist here is recommending full-scale chemo, and that seems to me overtreatment!!

Rayswife profile image
Rayswife in reply to Hazelgreen

Hi. I was also Her2 positive. After surgery i had chemo, radiotherapy and Herceptin treatment (16 years ago now) I also went on anastrazole long term. Only you can decide whether you want to go through chemo. Personally I was happy to trust the oncologist and give myself the whatever you decide, I wish you all the best.

Hazelgreen profile image
Hazelgreen in reply to Rayswife

Thanks, Rayswife, for your reply. Do you mean that you are still taking anastrazole after 16 years? Over the years have you had any scans to determine whether or not you have cancer in another part of your body? My problem is knowing I can go through all this treatment and its side effects for no benefit! Hazel

Rayswife profile image
Rayswife in reply to Hazelgreen

I took the anastrazole for ten years. I haven't had routine scans. I have had a couple when there was a concern but happily they were fine. The benefit to my way of thinking was that any stray cancer cells would be dealt with. The oncologist told me nothing below 2mm would show on the scans so I found the treatment reassuring. I hope this helps.

Hazelgreen profile image
Hazelgreen in reply to Rayswife

Thanks! It does!

Hello Hazelgreen. I'm really sorry to hear about your diagnosis. My own experience is, in early 2016 I was diagnosed with HER2+ breast cancer in my left breast. It was a small tumour but the breast looked a little inflamed. Unfortunately, my cancer had got into the lymph nodes under my arm, under my clavicle and in my neck. There was also a suspicious node in my chest but that remained stable and it wasn't possible to get at easily to biopsy. I had chemo before surgery (bilateral full mastectomy without reconstruction - my choice). My chemo was Carboplatin, Docataxel plus two targeted therapies, Trastuzumab (Herceptin) and Pertuzumab, all IV. It wasn't nice but I managed the recommended 6 cycles. Five years down the line and another lymph node in my chest, very close to the original suspicious node, showed up as cancerous on a PET scan. In early August this year, I underwent thoracic surgery to remove the lymph node and a margin of surrounding tissue. The subsequent histology showed that the cancer was confined to the lymph node and there was no sign of it in the surrounding tissue. However, I now have to continue with Trastuzumab and Pertuzumab, recently combined into one large sub-cutaneous injection called Phesgo, indefinitely. If I was in your position, I'm sorry to say, would take any treatment that's offered. Chemo isn't nice and the targeted therapies do have side effects, but if it cures you, I suggest it is the way forward. According to what I have read, HER2+ cancer can be difficult to cure and it can and in my case has metastasized. I'm actually fine in myself. I'm 61, I work full time, keep and ride a pony and walk the dog but I would much rather not be on cancer watch for the rest of my life. If it was me, I'd go with the recommendation of your medics. Sorry if this isn't what you want to hear. I wish you all the best and really hope that your cancer can be cured for good. I am in the UK.

Thanks for your reply, Sue! It was good that you had the PET scan! What prompted you to have it done?

I'm sorry to read that you are now going to be taking Phesgo indefinitely. What are your side effects, and how do you manage them? Is there any way of knowing whether it is working?

We are the same age so I'm particularly interested in your experience, and what you plan to do going forward. Thanks, Hazel

Hello again Hazelgreen and apologies for not responding sooner. Over the past 5 1/2 yrs, I have had regular CT scans to check that my cancer had not returned. It was in November 2020 that a scan picked up an additional abnormal looking lymph node. Because lymph nodes can look abnormal on a scan for all sorts of reasons, another CT scan was arranged for 3 months later. Unfortunately, the lymph node was still abnormal so a PET scan was arranged. The scan confirmed it was cancer. The node was then biopsied and that confirmed the cancer was HER2+. I was referred to another hospital which has a specialist thoracic surgery department and I had my operation. The latest update is that I have an appointment for another CT scan this coming Sunday. As for side effects from the Phesgo, for me, I am lucky that they are very manageable. The Pertuzumab can give you diarrhea for a few days. However, I have learned that if I avoid lactose I am OK. That's probably peculiar to me. Loperamide stops the diarrhea if necessary. Both Pertuzumab and Herceptin can cause heart problems and so I have regular Echo Cardiograms (not an ECG) every 3 months. So far I have been fine. I lucky that I am in the UK and so all my treatment has been paid for by our excellent NHS. Do let us know how you get on and whether you decide to go for chemo. I wish you the best, whatever way you go. Sue

Hi Hazelgreen. Her2+Ve is a nasty blighter and had poor survival before 2001 but herceptin and perjeta have been a total game changer but can only be given with chemo, not want you wanted to hear, sorry. The multi disciplinary team will know your levels of Her+ve and advice your best course, wonderful care in the UK

Hazelgreen profile image
Hazelgreen in reply to Linkj

Thanks, Linkj for your reply. I realize that the drugs have really helped HER2 patients whose cancers have metastasized, but my understanding is that not all spread once the surgeon cuts out the original lesion. I'm just trying to do the minimum for now, and take care of any metastases once they occur. How does your team know whether you have any metastases?

I totally understand, wishing you well whatever you decision x

I had a 9mm HER2+ Idc in 40mm of DCIS. No vascular invasion and not in my lymph nodes. I had a single mastectomy a couple of months ago and now on Letrazole. I was very concerned they didn’t suggest Herceptin/Chemo or radiotherapy as well for the HER + and have had several discussions at the breast clinic regarding this. The MDT weighed up the pros and cons and the benefit of chemo etc didn’t outweigh the damage it would cause. It is an extremely individual scenario, right down to where in the breast the cancer was. I am 57, had a full hysterectomy 20 years ago and was in a good prognosis group amongst other things. They said they got it all out, but I guess you never know for sure, whatever treatment you have.

Hi, I can't remember all the details of what I had as it is 10 years ago, all I remember was being taken into the side room with the surgeon and the nurse and told I had what they had biopsied was a grade 3 (9) tumour. I then went on to have it removed and full clearance of my lymph nodes under my left armpit. I then had to have another operation to clear the margins again. I then had 6 rounds of chemo TAC and 2 weeks every week day of radiotherapy. Then I was put on tamoxifen for 5 years and then letrozole for 5 years. I did get side effects but thought the treatment was worth it to avoid a recurrence. I just took whatever treatment I was told to take. They did want me to go on a blind study where you take aspirin or a placebo for a period of time They were trying to see the benefits of aspirin at the time I think. But I was pretty fed up after all the chemo and radiotherapy and said no to the blind study. Take care and hope that everything works out for you. My cancer was not HER2 it was 25mm and had gone into the lymph nodes so they said it was stage 2b I think, which was good at the time until they had to clear the margins again and my breast became infected and the wound was oozing and painful.

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