Tuesday, April 26, 2022

4/26/22: Medical Oncology NP Phone Appointment - I Need an Oophorectomy

Today's phone appointment was a follow-up to see how I'm doing on the anastrozole. I had printed out my list of side effects, but I ended up not mentioning the coughing and increased mucus. It's allergy season, after all, and it might not really be a side effect. 

Mostly, the bottom line is, I have a lot of side effects, but it's all manageable, and none of it limits my activities. My joint stiffness and hot flashes are worse than on Tamoxifen, but better than on exemestane. The dizziness is weird, but I haven't felt it in a couple weeks now. My NP said it's common for lots of side effects to develop around 2-8 weeks after starting a new medication, and then start to settle down after about 3 months, as the body adjusts. She also brought up vaginal dryness, which I hadn't really noticed except maybe some itching, which she said was actually a common symptom; she said she'd send me a list of products that can help. 

I thought that was it, the start of a potential stretch of stable, uneventful cancer care, but then she said, "Did you see your latest estradiol number?"

Ugh. I've been so focused on my LFTs that I totally forgot to check the estradiol from my last blood draw!

Turns out, my estradiol was 15. To be considered post-menopausal, which I need to be in order to take anastrozole, the estradiol should be <5. 

My NP said my medical oncologist already conferred with other oncology colleagues, and they agreed this is unusual. Their only guess is that the Lupron must not be working, but nobody knows why not. The point of the Lupron is to eliminate estrogen production by suppressing the ovaries, and since Lupron isn't doing it well enough, the consensus was to recommend I remove my ovaries. My NP will do some coordinating behind the scenes, and then she's supposed to call me back with next steps.

Incidentally, I mentioned that I never did hear from my hepatologist after seeing my FibroScan results online. I said I'm not really worried because I have an appointment scheduled this summer, but she said she'd check in with him to see if there's anything I should know before then. I appreciate her helping me out, even though hepatology isn't her department. 

To help me wrap my own head around everything, here's the whole hormone therapy / oophorectomy history:
  • Fall 2019: My genetic testing showed I have 2 VUSes: one in BRCA2, which is linked to ovarian cancer, and one in PALB2, which may be linked to ovarian cancer. My oncologist did not recommend removing ovaries to prevent ovarian cancer, but my OB/GYN thought it was a viable option for multiple reasons: 1) to prevent ovarian cancer, 2) as birth control, and 3) to eliminate the need for monthly Lupron shots. At this time, an oophorectomy didn't seem necessary, so I didn't pursue it.

  • 2020: Because my cancer was estrogen receptor positive, I needed hormone therapy to eliminate estrogen in my body. I got monthly Lupron shots (to suppress estrogen production in my ovaries) and was prescribed exemestane (a daily pill for post-menopausal women to block estrogen production in other parts of the body). The Lupron put me in a chemically-induced menopause, which allowed me to take exemestane.

  • 2021: A couple blood tests showed my estradiol to be too high; my oncologist thought maybe the Lupron wasn't working as effectively since my ovaries started working again (after having temporarily stopped working during chemo). Since I couldn't be considered post-menopausal anymore, I switched from exemestane to Tamoxifen (a daily pill for pre-menopausal women to block the effects of estrogen on breast cancer cells), while still continuing with Lupron. 

  • 2022: After a year of Tamoxifen, I developed non-alcoholic fatty liver disease. My oncologist took me off Tamoxifen and switched me to anastrozole (the same type of pill as exemestane, just a different drug). Since anastrozole can only be taken post-menopause, my estradiol would be monitored to make sure the Lupron is keeping it <5. My last blood test showed estradiol was 15, so the Lupron is not totally working, which means I can't be considered post-menopausal. The only pre-menopausal hormone therapy pill is Tamoxifen, which we already ruled out as an option. Now, having pretty much exhausted all other options, the only way to sufficiently eliminate estrogen production is to have an oophorectomy. 

2 comments:

  1. Irene- you are a warrior! You've got this. Sorry the medications aren't working so you could avoid the surgery. I know this, too, you will take in stride. Hang in there, my friend.

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    1. Patti!! Sometimes I forget that other people might still be reading. 😂 Thanks so much for the encouragement. ❤ What else can I do but forge ahead?

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