I got my first bottle of Tamoxifen today. It is an estrogen blocker. My tumor had receptors that were responsive to hormones. In other words, hormones fed the cancer. So now for the next ten years, I am to take an estrogen blocker in order to starve any microscopic cancer that may be lingering and looking to grow.
I have read a lot about Tamoxifen. Some people have a lot of side effects like joint pain, hot flashes, and other fun stuff. Some people have no side effects.
My oncologist wouldn’t really talk to me about side effects. It was strange and uncomfortable. I mean the fact sheet lists tons of possible side effects but she insisted the only side effect I should expect is an occasional discharge (Ewww!).
I left her office a bit frustrated. I am a very direct person and I appreciate when others are direct with me. I don’t like things sugar-coated. Seriously, just be straight with me.
She also told me that under her care, there will be no tests, no scans, nothing. Because according to her, if I did end up with metastasis, I would just get Tamoxifen and they would make me “comfortable”.
No. I am not cool with this. And I am even more frustrated. I mean, I am not Stage IV but I know from my reading that often Stage IV breast cancer patients feel discarded. They feel let down by research who do not spend a lot of time or money, comparatively, helping them. They often seem to feel let down by modern medicine.
Now I know I just finished treatment and no I do not want to go through what I went through in the last seven months any time soon or really ever again, however, IF I were to become Stage IV, I don’t think I would be willing to just “be comfortable”. No. I am not cool with that.
This is kind of bummer thinking for someone who has just finished something awful but I just had the appointment so it’s on my mind.
This just seems like something else to figure out. Frustrating.
November 9, 2013 at 11:11 am
It just never ends, does it. Just when all you need desperately to do us celebrate, or at least take comfort in knowing you’ve done the last of it and you get the rug pulled out from under you. You are going to have to find that within I think. And knowing you you will get there.
November 11, 2013 at 7:27 pm
Frankly, I would seek out another oncologist. Even if you are stage 4, you deserve to know that. How else would you know if you don’t get scans and such? I know “scanxiety” gets to some people, but I believe patients have the right to know what is going on, and pursue treatment (or non treatment) as they see fit. Stage 4 would not mean giving up, which seems to be what she is saying she would do. You have come this far, and I feel that should you need to, you would fight even more. You are young, you are strong, and you are beautiful. You deserve an oncologist who will be 100% behind every informed decision you make.
November 11, 2013 at 8:21 pm
I agree. I think it is time for her and I to part ways. I felt very dismissed at our last appointment. If you have any recommendations for a new one can you send them my way?