One of the nurses I talked to last week warned me that my medical oncologist might run behind schedule. She called 30 minutes late today, but I didn't mind. I appreciate it when I am not rushed through an appointment, so I just imagined that she was talking with other patients with lots of questions and issues, like me.
She said that FSH and LH aren't really reliable measures of menopause while on Lupron, so she mainly looks only at the estradiol. She confirmed that she does look for a very low number, like the "<5" value I had last July, before the spotting started. My two recent blood tests, however, had my estradiol at 31 and 10, which suggests that my ovaries are still functioning.
So why would the Lupron just suddenly stop working? She thinks it's not that the Lupron stopped working, but that my ovaries starting working again. Typically, chemotherapy puts the ovaries into a chemically-induced menopause - sometimes called "chemopause" - which is sometimes permanent, sometimes temporary. I finished chemo over a year ago, and my doctor figures my ovaries are only now "waking up". The Lupron is probably as effective as it's always been, but previously it was doing a good job suppressing chemo-suppressed ovaries, and now it's doing an okay job suppressing functioning ovaries. I asked if having partially suppressed ovaries is normal? She said it's "a little weird."
I am already on the highest monthly dose of Lupron. Apparently it's not unheard of to increase the dose even more by giving the shot every 3 weeks instead of every 4 weeks, but she said her colleagues didn't recommend it, since some patients get by on just half the dose I'm getting. There is a 3-month dose, which is 3 times the monthly dose, but it could produce inconsistent results, with the higher concentration of medication at the beginning of the 3 months leading to more side effects, and the wearing off of the medication towards the end of the 3 months leading to estrogen production.
So, she suggested I stay on the same dose of Lupron, and switch from exemestane to Tamoxifen. This is the #2 scenario of Ovarian Suppression + Tamoxifen that I described in this post. I have to say, I am so glad I have that post to refer back to! I was feeling uneasy about switching to Tamoxifen, because it feels like I'm "settling" for a less aggressive treatment, and I want to feel like I am doing everything in my power to reduce the chances of a recurrence. That post reminded me that I've always been in an intermediate "grey area," not clearly high risk, but not clearly low risk either. The original decision to take exemestane instead of Tamoxifen was an effort to err on the side of caution. I was prepared at the time to switch to Tamoxifen if necessary, only it turns out the precipitating factor isn't the exemestane being unbearable, but rather the Lupron being ineffective.
I was surprised that my doctor did not even bring up oophorectomy as an option. Since that was the path I was expecting, I asked her why not. Basically, she appears to have a philosophy of being conservative when it comes to surgery. Like, removing body parts is pretty drastic, so don't do it unless you really have to. This is definitely Ken's perspective, and I lean in that direction, too.
I told her my concern about "settling" for a less aggressive treatment, since my current treatment of Ovarian Suppression (via Lupron) + Aromatase Inhibitor (via exemestane) is supposed to be more effective. Shouldn't I consider switching from Lupron to ovary removal for the ovarian suppression, and sticking with exemestane? My oncologist basically answered the question by assuring me that Lupron + Tamoxifen is still an aggressive course of treatment. She didn't say it explicitly, but I got the feeling she thinks, at least for me, the risks of ovary removal are not worth the benefits of exemestane.
I'm a bit conflicted. On the one hand, I know I am "settling" for a less aggressive treatment, but on the other hand, I'm relieved I don't have to get an oophorectomy. I was already wary of the procedure because of articles like this that lay out the risks. It helps to remind myself that I can always opt for an oophorectomy later, if I change my mind. Also, it helps to remember that I am following the recommendation of my oncologist; I would have to go against my oncologist to get the oophorectomy, and that would feel weird, too, because I do think she's a good doctor. (I think if I really felt strongly about it, I'd be motivated to get a second opinion, but I'm not.)
So just when I thought I could get used to a stable set of side effects, I'll be starting all over again with a new medication. I think I can handle stuff like hot flashes and fatigue, but I really, really, really don't want to have any hair thinning! I'm just starting to feel optimistic about my hair growing back, but already it feels thinner than it was before chemo, and I'll be super sad if it gets even thinner. I'll also need to keep an eye out for more serious side effects, like symptoms of a blood clot or endometrial cancer.
On the plus side, Tamoxifen is supposed to have a positive effect in bones after menopause, so it may counteract the bone loss from Lupron. Also, it can lower cholesterol levels, which is convenient since I now have high cholesterol.
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