HER2+

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Hi, Was told ER+ and had lumpectomy and 3 sentinel nodes removed. 10mm lump, clear margins and lymph nodes. I was then told by the breast consultant/ surgeon that I would need chemo and herception as it was also HER positive. At my oncology appt yesterday a predict chart was used to assess treatment options, which surprised me. I thought I would be told what I needed. The test indicated chemo would only benefit me 1or 2%.Oncologist told me to weigh this up against long term chemo side effects. I’ve no idea as I thought HER2+ was always treated with chemo and herceptin. He has prescribed letorasole and 5 days radiotherapy. Anyone else been in this position please ?

  • Hi

     I do understand your confusion as my diagnosis kept changing. I was told the mammogram was only 10mm but the US was 16mm. I was then told that the biopsy was negative with grade 2 and could be treated with a removal and a short dose of radiotherapy and a 5 yr course of hormone treatment as it was hormone born.

    I had the lump removed at 26mm and lymph nodes removed which were clear. That's when it changed to HER2 positive and my tumour was grade 3 and was sent for an oncotype reocurrence score. Then next thing I know I was booked into oncology as the score was 57. The baseline should be 25-26. Panic set in. The oncologist explained that she recommended chemo as it was that high. Without chemo it was 40% chance of coming back at a later date. With chemo I had.a 12-15% chance of it coming back.

    I'm now on a high dose of EC and then Paclataxel after.

    But I do understand the confusion and frustration you must be feeling. Certainly made our head spin. The waiting didn't help either. Many what ifs, should,coulds,woulda questions 

  • Thank you for taking the time to reply. No one has mentioned this score system to me ! I wonder who I could ask ?

  • It was my oncologist who explained it to us. It's called oncotype dx score. My tumour sample was sent to a lab in America and took 4 weeks to come back. It gave time to heal from the operation but it was alot of waiting and not knowing. The MDT was very apologetic put they were in the same position.

    It's not a problem honestly. All our journeys are different 

    I'm not a specialist but maybe your score was low enough to be lucky to not need chemo at this stage. I don't honestly know. They do fire alot of information at you. 

  • Interesting, I was HER2+  It was also revealed after chemo finished that I was Er8 and PR 8, I think in a different tumour . This was 2019/20 but the predict test was never mentioned. To this day I am not clear exactly what my diagnosis was as even letters to GPs vary and they are not always correct. To this day the letters never acknowledge that the ER8 and PR8 tumour diagnosis was overlooked. A year ago for insurance purposes I got a list of current conditions which included the breast cancer plus melanoma !!! I don't have melanoma, I checked with oncology but it took me to suggest my record should be corrected.

    It would be nice if things were properly recorded and we were told clearly when and if things changed and what each test is for but perhaps they don't have time.

    Good luck with it all. Chemo is do able but it does have on going changes to your body eg I have some lingering neuropathy in my feet so should if you can . good luck x