Letting go of at least some of the fear

It feels good when your oncologist acknowledges that what you are feeling is real. Today, I had a six month oncology follow up. This is the first time I’ve gone a full six months without seeing my oncologist. It was a bit of a break through. That being said, for the last two to three weeks, I’ve been having Lupron woes. I’ve found myself overly moody and especially cranky/angry at things that really shouldn’t bother me. It was becoming rather problematic. I’m really glad that when I mentioned it, my oncologist acknowledged that what I was feeling was real, and it was something that we could/should do something about. And so, we’ve moved my Lupron shots to every 2.5 months rather than 3 months. We’ll see if that helps to even out the mood swings/hot flashes at the end of each cycle. If not, there are other options.

We also chatted about Aromatase Inhibitors (AIs). There is a theory that I should also be taking one. I stopped taking them 6 months ago because I was feeling horrible and couldn’t figure out the cause. I had a weird ear popping sensation that now I know was related to blood pressure meds, but at the time I thought it was that AI. My oncologist suggested that it was my choice – that if the side effects where too problematic, that the added benefit (beyond the Lupron) might not be worth it. I don’t recall side effects being too bad, as the main issue I had was related to my blood pressure meds. So, I’ll try again when I don’t have too much happening. The big concern for me is the bone/joint pain. If the AI increases pain, then it becomes not worth it. I’m already struggling with back pain, so I don’t want to add anything that will increase it. What I find particularly interesting is that for the first time I’m making decisions not out of fear. In that, I am deciding about the AI without feeling like it is a “safety net” that I need. It might help, but I’m also open to the idea that if the side effects suck too much that I am OK with not taking it.

The not so great news was around likelihood of recurrence. Now truthfully, there is no real way to know. My cancer was pretty unique. That being said, my oncologist sees a lot of people, so I trust that he has a good sense. I finally got up the courage to ask – it wasn’t easy. I’ve wanted to know for a long time, but I just couldn’t ask. I had hoped that I would hear that I was in the group of women who have a greater than 95% survival rate. Unfortunately, that wasn’t the number that he through out. He commented that with ER/PR+ the recurrence rate doesn’t peak at any point, rather it is pretty steady for the first 11 years before it drops off. Then when I asked he through out the number 20-30%. That is actually the pretty standard number, but not the one I was hoping for. I was hoping that because there are others with much higher recurrence risk, that my number would be lower. It certainly causes a moment of pause. And so, with that, I will plod along reminding myself to take one day at a time and reminding myself to keep truly living rather then dwelling on what the future may hold.

  • Becky

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