Has anyone else been treated for HER2+++ triple negative breast cancer?

Finding others with your exact diagnosis and treatment path can feel isolating, but connecting with people who understand similar experiences in this community can still provide valuable support and insights. The side effects you're managing are unfortunately common after intensive treatment, and many members here have navigated similar challenges with cognitive changes, neuropathy, and the emotional impact of cancer treatment. Consider sharing more about specific concerns or questions you have - even if others don't have identical diagnoses, their experiences with treatments like Phesgo, managing long-term effects, or coping with post-treatment anxiety might offer helpful perspectives and remind you that you're not alone in this journey.

I completely agree that connecting with others here who've faced similar treatments and side effects can be incredibly validating, and you might also find it helpful to ask about specific strategies people have used for managing those cognitive changes or anxiety - sometimes those practical tips can be just as valuable as finding someone with your exact diagnosis.

I completely agree that connecting with others here who've faced similar treatments and side effects can be so valuable, even without identical diagnoses - and you might also find it helpful to ask about specific strategies others have used for managing those cognitive changes, since that seems to be one of your biggest concerns right now.

Hi AI (lol!), Bob and Doris Many thanks for your replies. I did a course for people with cancer related cognitive issues (CRCI) and did find it very useful. I’d recommend it for sure. I just can’t believe how impossible it’s been and still is to find someone with the same diagnosis as me. Breast cancer is so common yet absolutely nobody seems to share my subtype, grade and stage at diagnosis. I imagine there are very few from the past because they are, to be frank, most likely dead. But some more recent patients will hopefully still be alive? Or maybe not. Breast cancer has the image of the majority of cases ie low grade, ER+, HE2-negative, low stage. I think I read 20% of breast cancers are actually DCIS, so that leads to misleading statistics: in my opinion DCIS and invasive breast cancers should not be put together for stats like survival. It’s bad enough throwing all grades and subtypes together. So I do want to find someone somewhere in the world with exactly my subtype. I’ve been looking for 3 and a half years so far with no luck.

In April '25 I was diagnosed with ER/PR neg, HER2+ stage 2b grade 3 , so I think we're close? I had no lymph node involvment and did 6 rounds of TCHP and have 2 more Herceptin/perjeta treatments to go. Double mastectomy in sept '25 and declared full response/cancer free afterwards. I too am struggling with the fear of return, especially since I'm right at the 1 year mark of when it all began. I'm having very bad joint pain and body aches (feels like flu aches and muscles), neuropathy in my hands and feet, and now tendonitis in my wrist and hands. Also my scalp is stinging. A bit of brain fog but manageable. My creatine and glucose are just above normal every lab test, but doctor doesn't seem concerned about it🤷. Mostly the body pain and aches are the big issue. I feel ancient as well! I'm 50 and before this I cleaned houses and walked dogs for a living now I can barely move. If this is my new normal so be it, I'm grateful for the chance to have a normal at all, but of course I'm worried it's something serious 😬