u/Resident-Purple6984

Hi friends,
I could use some hope today. I swear that every time I see a story of recurrence that it’s always my subtype. I don’t have the slow growing luminal A cancer that responds well to endocrine therapy. It doesn’t have targeted treatment like her2 positive cancer. We don’t have high PCR rates. To be honest, it feels a bit like I got chemo to see if that sticks, then endocrine therapy to see if that maybe works, then another pill that may help if endocrine therapy fails (but not by a significant margin). Then to add that I could recur now or 30 years from now. It just feels like too much most days. It feels like with hr positive her 2 negative cancer that if it spread to the nodes and was aggressive, it’s a matter of when. I guess I could use some hope that maybe it will turn out ok.

For those of us diagnosed with HR+ HER2- breast cancer, we know there is a long tail of recurrence risk. I can handle the cancer. I can handle the treatment. What I struggle with is the feeling that I’ll never truly be cured.

With TNBC and HER2+ disease, there seems to be a point where, if you make it several years, the risk drops significantly. With HR+ disease, it feels different. It feels like a ticking time bomb that never completely goes away.

Some days the hardest part isn’t what I’m going through now—it’s the thought that I may never be able to fully wake up from this nightmare and stop looking over my shoulder.

What makes it even harder is that it feels like every risk factor follows you forever. Grade 3 increases early risk. Then I read that HR+ cancers can recur decades later, so it feels like grade 3 also increases late risk. Lymph node involvement increases early risk and late risk. I recently read a study showing that women with 4–9 positive nodes still had a very high risk of distant recurrence years after diagnosis. Sometimes it feels like no matter how many years pass, there is always another statistic waiting around the corner.

For those who are further out from diagnosis, does it ever get easier? Does the risk actually decrease over time, or are we really living with a steady 1–3% risk of distant recurrence forever? At what point did you stop feeling like you were waiting for the other shoe to drop? When do we get to breathe?

What does it mean for hormone positive, her 2 neg cancer patients? My oncologist tells me not to worry about it but it’s been a year and I still have nightmares about it. I’ve read studies saying that lvi is worse than having 4 nodes! I realize I can’t change any of these things, but it would be nice to feel like I have an accurate prognosis. I know some people see their tumors shrink or disappear, my type doesn’t get that. I guess I just keep thinking that if chemo doesn’t kill it, which it rarely does in my subtype, and endocrine therapy maybe puts it to sleep, what keeps it from coming back? I guess I feel like this one pathology finding has stolen any hope that I have that I may be ok. Like my tumor had some nasty superpower can bypass nodes or spread through veins in a way that most tumors can’t. I guess I’m just struggling today. Sorry for the vent and thanks for any info that you may have.