Hello everyone, Had a big shock this afternoon. My post mastectomy histology reports (3 of them) are now in after 7 weeks of waiting…Stage 2, Node negative. Clear margins. Lymphovascular invasion. The shock is that whilst the pre-op biopsy was HER2 borderline then positive after the FISH test now the post op says HER2 borderline again but HER2 negative after the FISH test. The pre-op plan was that I would have Herceptin. Now I am being asked what I want to do??? I thought Herceptin was only given for HER2 positive. The oncologist is still recommending I have the Herceptin saying that if there was any ever HER2 positivity it would be wise to err on the safe side. Has anyone on this forum gone from HER2 positive to HER2 negative and if so what was the treatment plan? I really don’t want to have Herceptin with its heart risk and other side effects if I don’t need it. How on earth am I supposed to decide?
Hi @Tulip29,
I’m really sorry to hear that and I’m sure you’re feeling very overwhelmed right now. I’m hopeful someone who has had experience of a similar treatment plan will reply to your post soon.
In the meantime you might find it helpful to talk through your options with one of our breast cancer nurses, who are here for you anytime here on the forum on Ask our Nurses your questions or over the phone 0808 800 6000.
Sending love,
Alice
Hi Tulip
My cancer was Her2+ from the start. Given that Her2+ is more aggressive than the negative variety I can understand why your consultant is advising you to have Herceptin. My treatment was back in 2018/19 and I managed 15 of the scheduled 18 Herceptin doses. My heart was damaged by the chemo and the Herceptin and I now have heart failure so I totally sympathise with your worries. We all have to weigh up the pros and cons and it’s terrifying not knowing what to do and what the possible repercussions of our choices will be. On the plus side you are being given the choice.
It may be worth discussing reducing the doses with your consultant- I’m not sure what’s standard these days but there were studies done abroad that indicated 9 rounds of Herceptin worked just as well as 18 so perhaps that’s a compromise worth considering.
Best of luck to you
X
Thank you Alice, I spoke to Sarah on your helpline this morning. She suggested I request a face to face with oncologist to go through my results in more detail before consenting to treatment. We also discussed requesting a repeat HER2 test on a different slide and how some tumours are heterogenous (made up of a mix of cell types - some with HER2 receptors and some not).
Dear Bay, Thank you so much for your reply and for sharing your experience which I am sorry to hear has left you with heart problems. I have asked that my results be put to an MDT so they are not just the thoughts of the one oncologist. It has also been suggested that I request another pathology test using a different slide. I am going to ask for more time and a face to face in order to properly weigh up the risks and benefits. I also have type 1 diabetes so the heart issue is not insignificant. I know regular echocardiograms are offered but once the damage is done then I’m not sure what can be done? I wish you well with love from Tulip x
I’m so sorry you’re going through all of this! I have heard of this before. Do your research- talk to as many nurses and doctors as possible!
Enhertu is given to patients with Her2+ and low her2+ levels.
Tamoxifen has several side effects to consider too. I was put on tamoxifen and started having tumors on ovaries- reduced my prescription and they went away. I’m supposed to take 20mg/day but only take 10mg 3-4 times a week.
Remember doctors are practicing medicine. You have to be an advocate for your health! I’m praying for you sister!
Hi Tulip28,
I was diagnosed Her2 in 2019 at 70 years old abd had 4 muga scans to see if my heart could withstand chemo and herceptin. I guess I am one of the lucky ones with a strong heart andthe herceptin infusions didn’t bother me. I hope you do well whatever you decide!
Hi Tulip, your diagnosis is similar to mine. I was diagnosed triple positive after my biopsy. After my lumpectomy, HER2 was borderline and negative after FISH. My oncologist changed my treatment plan: initially I was supposed to EC+Taxol & Herceptin. I end up with only 4 round of EC (I was also node free, clear margins and grade 3). My oncologist decided it for me. I was too emotional. On one hand, I felt relieved because I was very concerned on having Taxol (I have some degree of neuropathy) and Herceptin (I have borderline high blood pressure). On the other hand, I felt under treated because from an initial treatment plan of 9 months - 3 chemicals, it was reduced to 6 months - 1 chemical. I asked the questions to my oncologist who gave a plausible answer and I trusted him. Trusting your oncologist’s expertise is crucial, ask your team for clarification and answers to your concerns. You need to prioritise your well-being and managing potential side effects is an important aspect of cancer treatment. At the moment. I’m comfortable with my decision of trusting my oncologist. I’m back at work and I have minor side effects. I continue to worry about it coming back - but maybe I would too if I had the original treatment plan…I wish you all the best on your journey 
. Take care
Dear Guida, Thanks so much for your reply. This has given me the courage to question my treatment plan. I’ve gone from ER 8 PR 0 HER2 + (after FISH) to ER 8 PR 4 HER2 - (after FISH). I did have 4 x EC prior to mastectomy but refused the Paclitaxol. I’m getting my pathology results checked by another breast consultant who is a relative of a friend by way of a second opinion. Have also decided to postpone my first Herceptin injection until I feel more confident about my situation. Your post has been absolutely invaluable as it demonstrates there is clearly no protocol in these situations. Thank you again. I am immemsely grateful. Love Tulip xxx
Dear All,
Just a quick update as saw oncologist again last week. She had not come across this before but said MDT recommendation from the previous day was to have the Herceptin and the Paclitaxol. She said they didn’t usually retest for Hormone and HER2 receptors so had chosen to ignore the results and go with the original biopsy. She had no risk data to offer me in respect of over/under treatment or of my heart risk. A request to retest a different slide was also refused and described as pointless. So I am still without any data to help me to decide. I have requested a second opinion privately but am booked in for the first injection tomorrow morning. x