GM, today I’ll be posting about my experience with hormone replacement therapy, wrestling with the potential decision to stop it, and reviewing The Substance. As a busy modern woman with Lynch Syndrome, I’m also prepping to go on a shoot next week, getting my yearly colonoscopy when I return, and having a lumpectomy surgery a week after that.
When we last left off, Kelli had been hit by a car and I had been diagnosed with Lobular Carcinoma In Situ, which is not considered cancer (I guess?) even though it has the word carcinoma in it. As I learned in the last couple of weeks, it does increase my risk of getting invasive breast cancer (more on that later).
Thankfully, Kelli is doing great. She had the staples (!) removed from her head about a week after the accident and had no lasting side effects from hitting her head. She was very lucky and now we are both wearing bike helmets when we use Citibikes. It’s not that hard to bring a helmet, even though nobody else riding around like mad on electric citibikes wears them. Sidenote: Historians may look back on this time in nyc history, and exclaim at the hundreds of helmet-less adults careening around on electric Citibikes. It’s like documenting the time when people were tooting horns of old timey fords without nary a seatbelt in sight. Anyway, wear a helmet folks!
This past month, I had two follow up appointments for my breast “area of concern” as I’ve been calling it. They were both with breast oncologists, one the surgeon who originally ordered my MRI and the other with a breast oncologist who prescribes treatment. For character purposes, let’s call them “the knife” and “the drugs.” For plot continuity, please recall that I have a GYN oncologist/surgeon who did my hysterectomy and prescribed me a low-dose bio-identical estrogen patch I’ve been wearing for the past year and a half since my surgery. Maybe I can call her “The junk remover”?
Sidenote: thank you to these doctors for all that they do. They have all been more or less nice to me, albeit very busy.
Anyway, “the knife” rushed through our appointment and explained that LCIS wasn’t cancer but that because of my family history and risk factors, she wanted to remove the area with a surgery so that they could test it and make sure there wasn’t another cancer lurking there. She said that having LCIS puts me at a higher risk for getting another type of breast cancer. I agreed to this because it didn’t really seem smart not to and she said the surgery was minimally invasive, same-day, akin to a lumpectomy. Of course I don’t love having to wait for another potential cancer result, but now that I know it’s there, it’s better to know now what I’m dealing with, which is apparently a terrifying amount of tiny alien eyes in my lobules according to the graphic below. My surgery is scheduled for 10/7.
“The drugs” took more time to explain LCIS - that it’s basically abnormally shaped cells that are stuck in my lobules and unlikely to spread (“that’s not how they function”). She said that it does, however, increase my risk of having a different, invasive breast cancer by 1% each year, so if I live with this for 20 years, for example, my breast cancer risk will increase 20% (and my risk is already increased from family history and Lynch Syndrome). She also said that it’s a condition that is hormone-related, and that she recommends I stop wearing, or wean off of, the estrogen patch and potentially start taking a low-dose of tamoxifen, which is a hormone-blocking drug that many women who have had breast cancer take for years after treatment to cut the risk of cancer returning.
I am going to wait until after the surgery to make a decision about tamoxifen, but the bigger unknown in my mind is about cutting off the estrogen I’ve been on. In thinking about stopping it I realized that aside from the 24-hour-period after my hysterectomy, during which I had hot flashes and felt feverish/not great because of having my junk removed, I had never been without estrogen. Which got me thinking, [Insert lesbian Carrie Bradshaw voice here]
Why do we as humans NEED hormones anyway? What am I so afraid of?
When I raised these questions with my PCP (“the bartender” who listens to my problems and, you know, at least knows a little bit about me as a human), she basically said, “Well, we really only need them for reproduction.” She brought up the things we all maybe sorta kinda know about menopause, like risk of bone density / bone loss, symptoms like hot flashes, headaches, weight gain, fuzzy brain, mood swings, but since every woman experiences those differently (and some don’t really at all), and I had already had a bone density scan that showed I was in really good shape, heavy bones-wise, the only thing ON PAPER that’s concerning about me not having some circulating estrogen is that I can’t have a baby. Since that had been crossed off my life plan long ago, going off of estrogen suddenly didn’t seem as daunting.
Another weird thought that’s been making me feel better about it is that dogs and cats get neutered and spayed typically at a young age. They lose all their hormones and live long, healthy, happy lives as our cute pets for the most part. When I shared this thought with The Bartender she said, “I like that. I never thought about putting it that way.” Feel free to use this in confronting your own fears about menopause, dear reader.
I left The Bartender’s office with a plan to taper off the estrogen, essentially wearing the weekly dose patch for a week and a half, then two weeks, then longer, changing it more infrequently and seeing how I feel before stopping it completely. And of course, if after my breast surgery they find something more concerning (aka another type of cancer) then I’ll follow the treatment for that and likely stop it immediately.
My candid fears about stopping estrogen are the following:
I will rapidly age.
I will not feel good.
Any last vestiges of youth will be sucked dry and I will enter an old crone era.
Kelli and I saw the film “The Substance” last night, and let me tell ya, without spoiling it further, it really taps into those fears. It’s like exposure therapy where you confront the thing you’re afraid of directly, until you can laugh in its face. It’s also completely unhinged and brilliant for making a horror movie where the main character is both the victim and the evil thing. We’re our own worst enemy ladies! (with a VERY strong supporting cast of misogynist old white men).
Recs this week:
Austin Eastciders Texas Brut Light Cider (4.2% ABV)
If I really feel like I want a drink at home with dinner, this is now my go-to. It’s really dry, not sweet, and relatively low in calories for a drink (a can of IPA for example has 150-200 calories vs. the 100 calories here).
LiteWerk Low ABV Fermented Fruit Wine (7% ABV)
Long ago, Kelli and I deemed pantry-type of stores that stock bougie food and drink items “fancy shit stores.” I got this wine from the fancy shit store a block away and I am finding it’s a great alternative for regular natural wine I love (typically more like 10-12% ABV).
Makkoli rice wine (6% ABV)
We’ve been going to Lil’ Dokebi, a delicious korean restaurant on the corner of block in Greenpoint, on a weekly basis. The staff is super friendly and meals come with complimentary banchan, a spread of little korean appetizers like kimchi, soybean sprouts, and pickled spinach or cucumbers. This is where I first tried Makkoli, a milky sweet rice wine that tastes like a sweeter, richer sake. It’s also fermented and has some purported health benefits, but I honestly just like the taste and that it’s lower alcohol than the perhaps more well-known korean drink soju (20% abv).
Current Anxiety Trigger: Alien eyes in lobule
Current Anxiety Relief: Cleaning my fan of dust
Current Anxiety Soundtrack:
As eloquent, informative, inspiring + thoughtful as ever. Thank you Kendra! ❤️