I’m with NED now.
NED is now in my life. He’s really great to have around. Troy isn’t even jealous.
That’s shorthand for “no evidence of disease” and it means as far as any doctor or lab knows, I don’t have cancer. It’s the closest thing to “cured” anyone ever gets.
I saw my oncologist yesterday and he told me the news. I’m glad to hear it. It seems anticlimactic, though, and also was my expectation. I’ve probably been NED since right after I started chemo – just no way to know it until they could actually examine tissue.
The new good news from the surgery pathology is that I don’t need radiation. Woo hoo!
I also got a prescription for tamoxifen, which is the drug I’ll be taking for the next several years. Tamoxifen helps prevent estrogen-positive breast cancer from recurring by blocking estrogen from binding to the receptors in cancer cells. It’s the only hormonal therapy I can take (right now), but a good one. It cuts recurrence rates in half – at least for a few years after initial occurrence – when recurrence rates are highest.
Tamoxifen’s effectiveness seems to be limited by time. According to a report in the Medical Journal of Australia, “Tamoxifen given for 5 years was significantly superior to 1-2 years of therapy, but the evidence for any effect of continuing tamoxifen for more than 5 years remained inconclusive. ” Between 5-10 years post-diagnosis, recurrence rates (at least in postmenopausal women) are about 2 percent per year, according to this large, 15-year study.
I’ve had many people ask me if I’ve heard about the new drugs out people can take and whether I should be on them. One of the things people hear and remember is that one is “better than tamoxifen” at preventing a recurrence. Another thing people remember is that the stories will sometimes mention if you’ve been on tamoxifen for a few years, it may be time to switch to a more effective drug. This is true for postmenopausal women. As a premenopausal woman, the first thing I look for when I hear a news story is that key phrase. And it is always there. Sometimes it’s in the lead sentence. Other times, it’s buried in the story.
There was also some conversation with the doc about ovarian suppression. I’m not completely familiar on the benefits of it, although I understand it in theory. We got sidetracked in the appointment and I forgot to ask more about it. Because my tumor has a high estrogen component, there is a theory that blocking estrogen production in the body would reduce recurrence rates. However, there isn’t conclusive evidence on this (because the opportunity to study women with functioning ovaries is much less than studying women whose ovaries have stopped working naturally). Anyway, I believe what you do is take a drug that stops your ovarian function or you have the ovaries removed. The doctor seemed to skip the info because of our previous conversations about us wanting more kids … and he moved on to tamoxifen before I could ask questions about this. So, I’m doing some reading and will discuss it with him at a later date.
I’m still off work from the surgery and still not happy about it. I see my plastic surgeon for a follow-up on Monday. I really want this $*@#& drain out. It’s an annoyance and hurtie. And I have to take antibiotics until it is out, which causes other problems for me. I’m not liking the expander, either, so I can’t wait to discuss this with her. It hurts and I want it to stop. I haven’t seen anyone for surgery follow-up yet, so it’s time for me to have face-to-face with someone!
And then when I’m done there, I need to get my port flushed. And then when I’m done with that, I need to see my surgeon again. And then I need my expander filled (every two weeks for eternity). And then I need my port out. And then I will have a surgery to swap the expander with an implant. And I may need a surgery to straighten up the other side then (or do another mastectomy. You know. Whatever.) And then I need a nip surgery. And then I’ll get an areola tattooed. And then maybe I’ll be done. Well, except for the pills I have to take for years.
Cancer: the neverending story.
Of course, I suppose any of this is preferable to actually having cancer, which I don’t any more – at least as far as anyone is able to admit, attest, document, validate, substantiate or otherwise verify using modern science and technology in all of its ways, shapes and forms.