I was 36 when I was diagnosed with breast cancer. Premenopausal. What some might describe as “childbearing age,” though I did not have children, nor did I have any intention of having them.
My cancer was hormone-positive, meaning that the tumor fed on the hormones produced by my reproductive organs, estrogen, and progesterone. This meant that, even more so than with most young cancer patients with a uterus, fertility was a part of the early conversations with my oncologist. He asked if I wanted to freeze my eggs. I gave a cheerful, resounding “nope!” — much to the consternation of my mother, also in the room for my first meeting with my care team.
My oncologist outlined the course of my active treatment, then told me about the adjuvant treatment I would be facing once the cancer was out of my body: ten years of intervention to either keep my body from making estrogen at all, or to block the estrogen receptors on my cells. All to try to keep the cancer from coming back. The standard of care for a woman under 40, the one with the weight of the research behind it at that time, was an estrogen modulator, which fell into the latter category. My oncologist told me that the estrogen modulator they recommended had actually originally been developed as a fertility drug — that it increased the body’s estrogen production, and stimulated ovulation — but at lower doses, it blocks your cells’ estrogen receptors, so its use as a breast cancer drug quickly took over any other proposed use.
Then there was the little part about how it can cause birth defects. I was told, in no uncertain terms, that I HAD to stay on birth control while I was taking an estrogen modulator. I had an IUD at the time that used the hormone progestin for birth control; because my cancer was hormone-positive, I was also told, in even firmer terms, that I needed to have that IUD removed. I needed to move to a birth control that did not in any way use hormones to do its work.
I had learned from the first time I had the IUD inserted that it is a very painful and unpleasant process. When it came time to have it swapped out for a non-hormonal, copper IUD, I told my gynecologist of my past experience. I requested a painkiller and a cervical softener. I got both. When I went to the pharmacy to pick them up, the pharmacy tech glanced at the names of the drugs, then asked me in a hushed tone if I was pregnant. Confused, I said no. I left the pharmacy wondering what business it was of hers, and why she had asked.
When I got home and got a closer look at the labels on the drugs, I saw that one had several emphatic warnings about its danger to pregnant women. So I looked it up. Misoprostol was prescribed for me because it would make my cervix softer and make it easier for my gynecologist to insert the IUD. It is also used in combination with mifepristone — which you may be more familiar with as RU486 — to induce abortion in the first trimester of pregnancy.
“Huh,” I said to myself. Then I took my drugs, got my IUD, and moved merrily along.
The IUD was removed along with my ovaries and fallopian tubes a few years later — a decision I made after a year on estrogen modulators made me either incandescently angry or darkly depressed, by turns homicidal and suicidal; after two subsequent years on ovary-shriveling goserelin and daily anastrozole. At 39, I decided that, with seven more years of adjuvant therapy ahead of me, I was not going to go through chemically induced menopause and emerge from it just in time to go through it naturally. I wanted to do it once and get it over with. I wasn’t going to have children; I didn’t need my ovaries. All they were doing in my life was helping my breasts try to kill me.
Today, my ovaries are long gone, but I still take anastrozole to block off the remaining estrogen that’s produced by my body even in the absence of ovaries. The ominous warning on the bottle catches my eye every morning: Avoid pregnancy as you were told.
As I write this, it is June 25, 2022. I began writing this essay six weeks ago when a leaked draft of the majority decision in a case that has Roe v. Wade in its sights was released. It made clear that it is the Supreme Court’s intention to overturn Roe. Yesterday, that intention was executed; the decision that was handed down was almost unchanged from that draft. For the first time in the history of the Court, it is deciding to take rights away from a significant portion of the population.
I’m 42 now, an age where it would be unlikely (albeit not impossible) to bear a child in any event, even if my ovaries hadn’t vacated the premises almost three years ago. It is horrible to realize that on a deep, dark level, I feel some relief that cancer ensured that right here, right now, the actions of four men and one woman yesterday do not immediately imperil me or the course of my life.
But we stand at the top of a slippery slope. The news is filled with reports of ultraconservative lawmakers, from local to state to federal, who want to use this as a springboard for tighter regulation of all aspects of reproductive rights. Trigger laws for even more restrictions on abortion leaped into effect the second Roe v. Wade was overturned. Attention has turned to outright bans on contraceptives of all kinds, even more than what has already been permitted to employer-sponsored health care under the banner of “religious freedom.” One lawmaker has gone so far as to wonder whether a ban on condoms is possible (because STDs aren’t a thing in a post-Roe world, apparently).
It is impossible for me not to think about an alternate-universe version of myself. Someone born several years later, who is 32 when Roe v. Wade is overturned, not 42. A different me, not quite two weeks past her 36th birthday, receiving the results of the biopsy on that lump she’s noticed for a few months. Meeting with an oncologist and learning that her tumor is hormone-positive. Hearing the outline of her treatment. Her options.
How limited they might be.
Look at my story. Look at how many things could quickly become endangered. Starting with the simplest of things: my IUD. Depending upon your state, depending upon what trigger laws went into effect, and what happens now that Roe has fallen, misoprostol may very well no longer be an option. It’s used for abortions, after all, so it’s now been banned. Getting an IUD — one of the only non-hormonal contraceptive options available to women that they can control, without relying on a partner — would have been agony for me without it. It wasn’t much fun with it. And that was with an opiate painkiller — which, of course, are still very much available, accessible, addictive, and destroying lives across the country.
Many of the treatments used to block or suppress estrogen production also negatively affect fertility. The estrogen modulator I took at first doesn’t, but the later hormone blocker had the effect of – to quote my gynecologist – “shriveling” my ovaries, putting me into medical menopause. I had to take a pregnancy test before I started it; if I’d been pregnant, I wouldn’t have been allowed to begin the drug.
In a post-Roe world, a law aimed at abortifacient drugs, if written vaguely or sloppily enough, could have the knock-on effect of taking out drugs that aren’t used for abortion, but that do reduce fertility – like hormone blocker or modulator drugs.
Many cancer treatments are teratogenic — meaning they can cause birth defects and otherwise injure a fetus if taken by a pregnant woman. A woman who finds herself pregnant while taking one of these drugs has an immediate and critical choice: terminating the pregnancy, continuing the pregnancy while knowing that the drug she’s taking to save her own life could damage the fetus, or discontinuing her treatment to try to safely bring the child to term. Those are three very difficult options.
In a post-Roe world, it could become two very difficult options. Behind one door: lifesaving treatment that damages the child you’re carrying. Behind the other: the health of the fetus, while sacrificing your own.
And what of the salpingo-oophorectomy I finally had after three years of being on an estrogen modulator, then goserelin? There are too many stories from women who were questioned, or outright denied care, by doctors when seeking out sterilization. Doctors who ask these women’s male partners if they consent to the procedure. I asked about having my ovaries removed in that very first meeting after diagnosis, and my (male!) oncologist squirmed away from it even when I was emphatic that I didn’t want children. Even in cases of chronic illness, like endometriosis, I’ve heard of women needing to change doctors to find one who will allow them a desperately needed hysterectomy. Women were often not trusted with medical decisions that permanently affected their reproductive health in the world we lived in before June 24th.
In a post-Roe world, I would not be in the slightest bit surprised if any surgical option that permanently affects your reproductive organs was off the table in some states. No matter the medical need.
I can already hear people telling me I’m being dramatic or catastrophizing. Surely this won’t happen. Of course, this won’t affect cancer patients like this. This is only about abortion, not other “legitimate” medical procedures (as if abortion isn’t also health care).
To this I say that laws are written by people who are not medical professionals. Who are not scientists. There are real-world examples already of abortion laws that were written to be blunt instruments, not scalpels, taking women down in ways we could not have imagined. Witness the woman in Oklahoma convicted of manslaughter in November 2021 because she had a miscarriage while happening to also use illegal drugs. There was no proof that her drug use caused the miscarriage. Miscarriages happen in 10 to 15 percent of pregnancies, in even the healthiest of women who do absolutely everything “right.” But under current laws — current laws, that already existed in this country before this outrage of a ruling — anything a woman has done during her pregnancy that could conceivably be to blame for a miscarriage is now fair game for prosecution.
It is absolutely plausible in the world we have just entered that a woman who becomes pregnant while in cancer treatment and miscarries can be prosecuted for manslaughter or murder.
It is absolutely plausible that any and all of the medications and procedures that have been a part of my personal cancer story will be outlawed or otherwise made inaccessible. Intentionally or otherwise.
Avoid pregnancy as you were told has taken on a dire new meaning.
Leave a comment below. Remember to keep it positive!
Thank you so much for writing this article, Rachael, and to Elephants and and Tea for sharing it with our community. Your story is so similar to mine with the exception that I was diagnosed at 32 and froze my eggs right before chemo as I have always wanted children. I even had to do the hormonal to copper IUD swap out like you did and was dreading it based on how painful they are to place. I had no idea that there were options to use drugs like Misoprostol to ease the process. Access to that type of medication would have greatly improved a traumatizingly painful medical procedure.
I have always advocated for the importance of access to abortions and safe health care for all, but cancer has increased my knowledge of the absolute necessity of it. We didn’t choose to have cancer at such a young age, we should be guaranteed to have access to any and all medications we need to get through life during and post treatment. Like you said, many of the drugs used to treat hormone positive cancer are also used for fertility treatment and lawmakers don’t seem to take that into consideration. The idea that I could lose my access to these medications that keep me alive is terrifying. Thank you for explaining this so well. I will be resharing this article with others!