CommunitiesPost-Treatment / SurvivorshipHas anyone else been treated for HER2+++ triple negative breast cancer?

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

MD

Community Member

9 days ago

Hello, Anyone here also been diagnosed with or been through treatment for HER2+++ ER-zero, PR-zero, Grade 3, Stage T3-N3-M0 breast IDC? I was diagnosed 2022 but still can’t find anyone else with exactly my subtype. People might be HER2+++ but lower grade or ER+ so that is not the same. It would be great to chat with someone who’s been through the same. My treatment: 4 cycles EC chemo 12 infusions Paclitaxel prescribed but anaphylaxis and side effects meant 2 Paclitaxel then 2 Abraxane then stopped 18 Cycles Phesgo Mastectomy and full lymph node clearance levels 1, 2 and 3. 15 days radiotherapy My ongoing side effects include: Cognitive issues (very noticeable and problematic) CIPN but thankfully greatly improved over time Joint pain and stiffness Feeling ancient Lack of self confidence; anxiety; terror of stage IV. Thanks for reading

1
4 comments
Comment
CA

Community Member

9 days ago

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.

3
BO

Community Member

9 days ago

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.

0
DR

Community Member

7 days ago

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.

2
MD

Community Member

6 days ago

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.

Outcomes4Me

© 2026 Outcomes4Me Inc. All rights reserved.