I’ve been diagnosed with left breast ductal cancer (35mm, Grade 2) with mixed HER2 status—50% HER2-negative, 50% HER2-positive (confirmed on FISH). My Ki-67/MIB-1 is up to 30%, and I had 0/6 lymph nodes involved.
My treatment plan includes:
EC-Paclitaxel chemotherapy (6 months)
HER2-targeted therapy (Phesgo) for 1 year
Radiotherapy with boost
10 years of endocrine therapy
Bisphosphonates during chemo
Eligible for Neratinib afterward
I’m struggling with the intensity of this plan, especially the length of chemotherapy and HER2 therapy. My biggest concerns:
Could my mixed HER2 status justify a shorter HER2-targeted therapy duration?
Are there cases where 6 months of trastuzumab-based therapy is used instead of 12 months?
Has anyone negotiated adjustments to their treatment plan to balance work and side effects?
I’d really appreciate insights from anyone who has gone through similar decisions—especially regarding balancing work with ongoing HER2 therapy and whether treatment intensity can be modified.
Hi @nat_story I’m sorry to hear of your diagnosis and can understand your confusion with your HER2+ status. I have two separate tumours one in each naughty boob one was grade 1 ER+ the other grade 2 ER+ HER2+. I had 12 weekly Paclitaxel with Herceptin, lumpectomy, radiotherapy, 5 years Letrozole/Exmestane, Zoledronic acid.
I had 18 cycles of Herceptin over a year and there are some that have had 9 cycles as the Persephone study suggested that 9 gave as good outcome as 18 cycles.
There is a very supportive thread called HER2+ and need some buddies with over 50k views you may want to join.
There is also a monthly chemo starters group , this is the link for June 2025.
I taught in a primary school so was signed off as soon as I was diagnosed, my head said I needed the time to let my diagnosis sink in, I did. I was singed off for all my treatment due to risk of infection in school but many on the HER2+/ chemo starters threads. have worked through chemo and Herceptin/Phesgo/Kadcyla. I think it depends on what you need, what job you do and where you do it. Having a cancer diagnosis means you are now disabled under the Equality Act 2010 and your employer should try to make reasonable adjustments.
Changes to your treatment plan happen for many reasons, it’s not something that can be planned for. I personally had a reduced dose of chemo due to existing health conditions and family history, I then had an allergic reaction, it was reduced again and then an infection and it was reduced again. This allowed me to complete my treatment. Some ladies have also had their Herceptin stopped early due to allergic reactions.
I work in an office and my manager has been very supportive. They’ve reassured me not to worry about my sick leave, as they’re very flexible with it. Still, I’m struggling with how intensive this treatment is.
I didn’t know much about Herceptin until recently, and now I’m terrified because some patients experienced severe side effects and couldn’t work while taking it. I can accept not working during chemotherapy and radiotherapy, which will last about 7-8 months, but I can’t afford to be off for an entire year while on Herceptin.
I also had no idea that a single tumor could be both HER2-positive and HER2-negative, which is why my treatment plan is prolonged to target both receptor types.
I feel terrified, and it honestly feels like my life is ruined. Sorry for being dramatic.
You are not dramatic, it’s all very upsetting and confusing.
You could call the BCN nurses to talk this though on 0808 800 6000 Mon to Fri 9-4 Sat 9-1.
I’m pleased you have support at work. Having Herceptin can still cause low white blood count and risk of infection so you may be able to work but more flexibility such as work from home and ensure your colleagues are not ill when you are in the office. But until you start you won’t know how you react.
Hi, I worked throughout chemo, radiotherapy and herceptin. Herceptin was an inconvenience, but I had no problems. I left work a couple of hours early every 3rd Thursday and had it intravenously. Now it is a slow injection. Whilst it does seem an overwhelming treatment plan, once you are through it, you will be glad you did it. Best wishes
