Hi. I just discovered this Mayoclinic Connect and I’m hoping to connect with pwME who have metastatic breast cancer.
I was diagnosed with breast cancer in 2020 when I was 62, and it has since come back twice. In 2023 I had a bilateral mastectomy, and in March 2025 I was told it has metastasized to my hip bone.
Having both ME and cancer has been a challenge, as I’m sure you know, but the metastasis has been the toughest.
First, it took a while to wrap my head around the fact that it’s end stage. However, these days some can be considered a chronic illness. Also, I’m lucky (for now) the cancer has only shown up in one spot, and I’m told it won’t likely grow or spread for years.
Second, I'm taking Letrozole, which is my best chance of holding the cancer at bay. I should be on Ibrance but my oncologist doesn’t think I’d be able to tolerate it. (I thank my lucky stars she knows about ME!). The Letrozole alone is making my ME worse… fatigue, lower tolerance for activity, insomnia, muscle and joint pain, low mood, brain fog, and I think orthostatic intolerance/POTS. After taking Letrozole for 1 year my oncologist had me stop it for 6 weeks. She says I’ll probably have to take breaks of 6-8 weeks once in a while when I feel I can’t tolerate it any more. This is to hopefully allow me to take it long-term rather than stopping altogether.

Third, advice for people with cancer regarding treatments or side effects usually involve things like taking one(!) daily nap, going out, seeing friends, starting a new hobby… all things that are hard or impossible for me to do, and always lead to PEM or a crash anyways. Yet, all too often I push myself, to some degree, to do some of these things, before my time runs out… and the ME is getting worse. Also, though cancer support groups are great, it can be frustrating and discouraging when people talk about, say, having a really bad week when they couldn’t do anything for a 3(!) days, but then rest and went on a trip the next week. To top it all off, I feel guilty for comparing myself to others. After all, some are closer to the end of « end stage ».

How are people are dealing with the side effects of Letrozole and worsening ME?
Has anyone taken occasional breaks from Letrozole? I worry all the time I’m not doing enough to keep cancer at bay.

I find it hard not to feel down or depressed… it’s getting hard to tell the difference sometimes.