Any Long Time Survivors with Aggressive Tumors

Hello. I am not sure how you want us to define long term, but I am 3 1/2 years from mets to liver. Also grade 3, ER+, PR- (now <10%), HER2-, pretty sure luminal B. Now with FGFR1 amplification mutation.

Feel fine.

Cat lady - are you at a major center where your MO was ok to remove the primary and do chemo? A few of the other de novo ladies on here the standard is to go with hormone therapy and no surgery.

But I agree with your observations about the long term (to me that is over 8+ or so) ladies its a combination of factors like having one met discovered after treatment just by chance or HER2+ responding well.

Hi Crazycatlady, I have aggressive, Luminal B like you. When I was first diagnosed, my BC was going at 100mph. Long-term remission is ideal and I hope that is exactly what you get. But even if it is not, there is still hope to be around for a long, long time, co-existing with mets. I am 5.5 years into bone and liver met diagnosis and was FILLED with mets in all my bones and throughout my liver when I was diagnosed. I have been on many treatment lines but have managed to continue working full time, maintain most of my lifestyle since before dx and still very few people even know I have stage 4 and am on treatment. There is someone else on the boards who has had liver mets for what must be around 10 years now and has never been NED. She usually checks in once per year to let us know how she is doing but isn't around here regularly.

It is frustrating to see that the durable, long-term remissions do seem to come more frequently in HER2+, micomets or oligometastatic mets, indolent hormone positive and more recently, small pockets of triple negative or other types with mutations or other genetic alterations that respond to immunotherapy. Herceptin was a game changer for HER2+. It just took one drug to change the prognosis for HER2+. I am hoping that drug is in the pipeline for us. It just takes one treatment!