Breast cancer treatment and mental health roulette

For years before my breast cancer diagnosis, I struggled with anxiety and depression, toughing it out with therapy alone and refusing to take medication. I was afraid I would no longer be myself if I took medication. In my 20s, I finally realized that the “myself” I was so afraid of changing was miserable, depressed, and barely functioning. I accepted that there is nothing wrong with helping your brain chemistry.

I spent years on psychopharmacology roulette: you try a new antidepressant, give it a few weeks to build up and kick in, wait another few weeks to see if it’s doing the trick, adjust the dosage, conclude it’s not working, and start all over again. I don’t know exactly when I finally settled on 30 milligrams of fluoxetine (Prozac) a day. I’d been on all the flashy new SSRIs, even an SNRI or two, but in the end, it was ol’ reliable Prozac that became my faithful companion.

Yet Prozac – and contraceptives – couldn’t fully control those premenstrual flashes of anger and anxiety. My husband would sheepishly predict my periods – I would be extra-irritable – and he was always right. Later, as a survivor of hormone-receptor positive breast cancer, I would see the link between female hormones and mental health more clearly.

Two weeks after my diagnosis, I met my oncologist for the first time. He explained that the tumor was strongly estrogen- and progesterone-receptor positive and HER2 negative. He then ran down the path of my treatment: surgery to remove the tumor, chemotherapy should the Oncotype DX score show it was necessary, then 40 radiation treatments – after that, anti-estrogen therapy.

As my oncologist explained, because I was under 40 (I was 36 then), I would need the standard of care for ten years, another ol’ faithful: tamoxifen.

“But you cannot take Prozac on tamoxifen,” he warned. In fact, many SSRIs are contraindicated with tamoxifen. I would have to find not only another antidepressant, but an entirely different class of antidepressant.

He also mentioned that tamoxifen was known to cause or exacerbate mental health issues in some women. He said we would keep an eye on my mood and adjust as necessary.

A study had recently been completed in Europe demonstrating that ovarian suppression and aromatase inhibitors (OS/AI) could be as effective as tamoxifen for younger women. But my doctor felt more comfortable prescribing tamoxifen with the weight of evidence behind it.

Not long after my first surgery, I visited the cancer center at a prestigious research university nearby for a second opinion. There I met with another oncologist, this one in favor of OS/AI.

A researcher by nature and by trade, I had considered the consequences of medicines that would affect my hormones. I asked him directly: Which would have less impact on my mood?

He shrugged. “There’s literally no way of knowing.”

So, cancer was the most urgent issue and, given that both options seemed equally poor for my mental health, I decided to trust “standard of care.” Six weeks after radiation, I started taking tamoxifen. What followed was twelve months that my husband and I regard as one of the worst times of our marriage, worse by far than the months of active treatment. I was, by turns, a deep dark hole and a ball of incandescent rage. I will never know if I could lay the blame on tamoxifen for the nosedive of my mental health; I was dealing with PTSD after the end of treatment, and I had also quit my old friend Prozac to play psychopharmacology roulette once more.

Whatever the cause, it was the worst my mental health had been since I started taking Prozac years before. After a year of occasionally suicidal agony, I told my oncologist, “I want to go back on Prozac.”

Off of tamoxifen, on to goserelin (Zoladex, the ovarian suppression, a giant needle stabbed into my lower belly once a month) and anastrozole (Arimidex, the aromatase inhibitor, a cousin of tamoxifen that would block the remaining estrogen produced outside of my ovaries), I eagerly returned to my psychiatrist for my Prozac script – only to find, with the changes to my body chemistry, it didn’t work for me anymore.

Back to the roulette wheel. To spin and spin until I finally found a new drug – vortioxetine (Trintellix), another SSRI, which worked almost like my old friend.

Life went on. My husband and I got new jobs and moved 200 miles away. When I met my new oncologist, she listened to my history and, afterwards, as if it were common knowledge, she said: “Estrogen and serotonin are linked.” In tamoxifen’s role as an estrogen blocker, it also blocks serotonin. She blew my mind.

No one had explained this to me before. Had I known, I might have chosen the AI/OS route from the start.

Oh, by the way, anastrozole has the same effect. “But to a lesser degree,” she said.

I broke down crying. Was this truly the bargain I had struck for the chance to survive? So, maybe I would live cancer-free, but I’d be doomed to misery for ten years?

I didn’t think I had a choice. Floating before my mind’s eye was the Oncotype graph showing the likelihood of recurrence with various adjuvant treatments. Chemo would make no great difference. Blocking my estrogen, one way or another, would. I was in this for the long haul.

A year later, I read New York Magazine’s cover story: Listening to Estrogen. In it, Lisa Miller examines why researchers continue to neglect the the initial diagnosis of schizophrenia in women over 45 years of age . From Miller’s article, I learned that the role of estrogen in mental health - in every stage of a woman’s life - is under-researched and under-explored. Information from the rare research studies that do exist is criminally unknown by the Establishment of psychiatry. Women’s mental health has been ignored as much as our physical health.

I read the article. I cried. I re-read it. I sent it to my husband, my parents, my friends. I cried some more. A follow-up shared the comments the author received from women recognizing themselves in the article and asked for more stories. I sent mine in and found the first time telling my story to be therapeutic, even if I never did get a response.

Any cancer survivor will tell you that survivorship is hard. Many will tell you about the struggle after treatment is done, when the world around them - and sometimes even those closest to them - tells them that everything should be back to normal now. In my experience, most of that last group will also tell you that their oncologists did not help at all in this struggle.

Now, consider the people who are dealing with hormone-receptor positive cancer. Look to social media where they gather to share their stories. See how often mental health issues appear in posts. Look, especially, for the people talking about their struggles on tamoxifen. Then look for me in the comments, sharing what I have learned. Look for them to say that I am the first to tell them about these side effects and their options.

I know, fundamentally, that oncologists are specialists. Their focus is treating the cancer, not the side effects. Some, I imagine, are better than others at a holistic approach. But, in my six years of survivorship, when I talk to other patients and survivors, almost universally, I hear the echoes of my own story.

It’s surprisingly difficult to find research on mental health during survivorship. To quote from the email I sent to Lisa Miller: “We're sort of left to float on our own, an imaginary pink army that likes to get pink ribbon tattoos and march in Komen parades in tutus in October.” Thriving. Smiling. Because it’s all over now, isn’t it?

Now add to that being premenopausal. To reduce your risk of recurrence, you must take an express train to the stop all women will eventually reach, without the benefit of hormone replacement therapy.

And, now, add that psychiatrists barely understand how estrogen impacts mental health.

Is it any wonder that so many of us struggle?

Six years later, my mental health is still not where it was before I was diagnosed. I look at pictures of myself in the mid-2010s, in the pink of health, and I remember those being some of the best years of my life. I was happy; married to a wonderful man, with Prozac doing its job; and in a career I enjoyed. I was healthy; menopause had not yet piled on 50 pounds and changed my Achilles tendon issues from nagging to chronic, eventually causing me to give up running.

I had no idea what was coming. That so many women have the same experience must change.