Heterogeneous tumors?

[TammyCross]

I always had minor progression that led to a change in medications, but the last couple of treatments didn't work, and I ended up with 12-13 little tumors around the left side of my chest and one in my spine. Did a blood biopsy, and had developed ESR1 mutation. No wonder the various combos of AI + targeted therapy hadn't worked.

I went on Orserdu (elacestrant) which is most effective for ER+ with the ESR1 mutation. I felt it wasn't working, but a PET/CT after three months showed that 10 or 11 tumors had resolved. I no longer had one in my spine, and the one in a lymph node was also gone.

The problem is that one tumor had doubled in size! The SUV had decreased from 13 to 10.

My oncologist believes -- as do I -- that the one tumor has a different type or genetic profile. I am having it biopsied on Monday.

I know some of you on here have tumors that are different types of breast cancer. What happens then? Do you take different meds for the different types?

I am not sure whether she will keep me on the Orserdu. From a remark she made, I think not. I wonder if the tumors that vanished will return, or others that have the ESR1 mutation.

I guess this could be heterogeneous in different ways - a different cancer altogether, like lung cancer (the tumor is in the pleura of my upper left lobe), or HER2 positive, or maybe HER2 negative (mine have been HER2 low for 6 years), or ER-? I have not heard of anyone with ductal only developing lobular...

So, for those of you with heterogeneous cancers, what were the variations and how was treatment of the different types handled?

[HelenWi]

hi Tammy,

I don’t think I’ve had heterogeneous tumors, but I’m wondering if you only have this one outlier, might it not be candidate for zapping it with radiation? Early on, I had two new spine mets while others were stable, so we zapped them and that allowed me to stay on the same therapy for a while longer. Of course, every situation is different but thought to share this experience.

Helen

[TammyCross in reply to HelenWi]

Good idea! I was thinking maybe they can't do that with a lung, but I used to see a rheumatologist, and he said in the old days, before all these new meds, they would radiate it. I know one person on here had a single tumor in her lung and had to push hard to have it removed surgically, and she has no tumors now. Once we find out what it is, I will suggest that.