Question about Residual Disease

lollypopgirl17

Hi.

I finished Kadcyla this past April. My original diagnosis was October 2021, triple positive, Stage 2, pathogenic ATM gene variant. Started chemo (first Taxotere then Taxol (every week) plus Herceptin and Perjeta (every 3 weeks). Mastectomy in March 2022. There was residual disease so I had to start Kadcyla in June (waited a month or so after DIEP flap reconstruction and then recovering from infection).

So I have a few questions because I'm still not clear. Why do some women still have residual disease and others don't? Does being triple positive make it less likely to have a complete pathological response? (Although I know someone who did have a complete response and is also triple positive). Does the chemo regimen before surgery make a big difference?

I'm just worried. Thanks.

laughinggull

Hi lollypopgirl

I also had triple positive cancer and lots of residual disease, including in my lymph nodes. Sorry you got these news. Every cancer is different. Hormone positive cancer is very often not completely destroyed by chemo, i.e. it is not unusual to have residual cancer and no PCR with ER+ cancer, which is part of what you have.

My cancer before chemo was grade 3, after chemo + herceptin + perjeta it became grade 2. The interpretation my oncologist gave me is that the more agressive component of the cancer, the grade 3 HER2+ part, was wiped out by chemo + herceptin + perjeta; however, there were remaining cancer cells, less aggressive, grade2, ER+, that were probably becoming resistant to chemo, but were expected to de deterred by hormone treatment. At that time, Kadcyla was about to get approved to prevent recurrence for triple positive patients with residual disease, but I was not allowed to have it yet, that approval came too late for me; I was very upset about that and would have done anything to get that treatment.

I know it is very disappointing to not get a PCR. But you will have hormone treatment, and also Kadcyla, and your chances are excellent that you will never see this cancer back. You have early stage cancer of a very treatable variety.

I chose to be agressive targeting the hormonal component of my cancer, and I had my ovaries removed and started taking an aromatase inhibitor, which I have been taking for five years. I also had radiation to prevent local recurrence. I am doing well five years later.

Best, 😘

LaughingGull