HER2+

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

Hi.  I’m in the States.  I never received a score and was told I don’t need scans.  I’m being treated at a large cancer, so I trust my team.  I’m Her2 pos. 1.8 cm, grade 3, no nodes. Diagnosed Dec 1, 2023 (mammo was normal 3 months earlier), lumpectomy Dec 14. January started taxol and Herceptin for 12 weeks, then Herceptin Hylecta every 3 weeks. Rads was in April/May for 21 total rad visits. Only 2 Herceptin treatments left and I’m starting to panic.  I have felt like I was “doing something” while in treatment, but not sure what 2025 will look like once I’m done. 

Hi Ahmamma, I was diagnosed in January with invasive ductal carcinoma, with one affected lymph node and cancer cells in the breast tissue. Initially I was told I would take one of two options. First being surgery and radiotherapy + hormone blockers, as I was ER positive and PR positive. The second apparently depended on the HER2 result, so treatment could be chemo and also phesgo ( combination drug, including Hercepin) injections, prior to the surgery. It turned out that I was HER2 positive so started with chemo and I'm currently still on phesgo injections, as I need 18 in total. I have had my surgery and due to start radiotherapy in the next couple of weeks.  I wasn't given any test or told any percentages, just this is what treatment I would need. Maybe this was as I had lymph node involvement, I'm not really sure. I would think your breast care nurses would be able to explain a bit more to you, as everyone's treatment can be a bit different. I wish you well moving forward. Xx

Hi, it might be worth giving the lovely folks here at Macmillan a call. They have a chat line and I’m sure can help you interpreting the information. The number is 0800 808 0000. Best wishes