Art by Kirsten Kramer

Re-engaging the health system

I quit my treatment program because it was making me crazy but I feel so naive for thinking I could leave.

I've had an emotional week. 

It began with a difficult conversation with my oncologist over Zoom on Monday. I am two years in remission but my chances for cancer recurrence are higher than I had previously understood. 

As of Monday, my oncologist estimated my chance of recurrence was around 30 percent. And she said, if I got breast cancer again, it would likely be terminal.

Because of this pretty-high chance, and how deadly it would be if it came back, my doctor urged me to go back on hormonal therapy, one version of which I had quit in the fall.

Deep breath. 

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I quit hormonal therapy last fall, leading to Monday's follow-up with my doc, because it was making me crazy.

I got diagnosed in August 2018 at 31-years-old with a cancer that feeds on estrogen. So, I went into drug-induced menopause as part of hormonal therapy for two years. I did that program in addition to chemotherapy, a clinical trial, radiation and surgery.

Losing out on estrogen during that time was very hard on my body and mind.

And, by the time all that was over, when the doctors declared me cancer-free, I was beyond done with the health care system. I was at my wits end with how poorly doctors, hospitals, insurance and society treated me once I became ill. 

So when I got the green light, I ran in the other direction, as fast and hard as I could. Now, a mere six-months later, that system is calling my name.

I feel so naive for thinking I could leave. 

My final diagnosis after I completed surgery at the end of Feb. 2019 was Stage 2b. That means we caught the cancer right before it had spread throughout my body, an incredible stroke of luck. 

I had once thought that if the cancer returned, because it would likely be my same, relatively unaggressive disease, we'd just catch it again. 

But that's not how cancer recurrence works, my doctor said on Monday.

"Seventy percent of the time it is metastatic," my oncologist said over Zoom.

Metastatic is a description of cancer on the move, an incurable diagnosis that often leads to the patient's death. I was floored. Seventy percent? My husband later told me that when he heard that statistic, he wanted to cry. 

If someone tried to explain to me the general nature of cancer recurrence before this week, I missed it. It feels like an entirely new existential burden.

"Living with cancer recurrence statistics is like looking down the side of a tall building," my dad told me on the phone on Tuesday. He's survived his own prostate cancer, so far, but the idea that his cancer could come back has haunted him for years — a fear I never really understood until now.

"I knew a guy with prostate cancer," my dad said. "He survived for 20 years, no problem. And then one day it came back and, boom, he was dead."

My dad is a scientist who researches cancer and said it has a tendency to lie dormant for a long time, and then for whatever reason, get reawakened. He, too, encouraged me to go back on hormonal therapy. 

I consented. So, since Tuesday, I have been on 5 mg a day of a drug called Tamoxifen. The goal is to work my way up to 20 mg a day, and stay on it for as long as I can stand it — even as long as 10 years. Tamoxifen blocks estrogen receptors, but doesn't deplete the body of estrogen over all, and so my doctor hopes I'll be able to tolerate it better.

If I stay on Tamoxifen, my doctor said, my chance for cancer recurrence drops from 30 percent to 15. And the longer I stay in remission, the better my long-term survival rate gets.

But the statistics don't tell the whole picture. Every tumor is unique to the patient.

"Cancer can have between 3,000 and 150,000 coding mutations, the vast majority of which are unique to you," my dad's friend, an oncologist, told me this week. "That’s why statistics are both helpful and not helpful."

So, while my chance of recurrence on Tamoxifen is 15 percent in general, no one knows what Alexandra Glorioso's tumor is up to in reality. It could be completely gone. It could already be back and I just haven't gotten a recent-enough scan to see it.

(I'm getting a CT scan of my abdomen, chest and pelvis on Monday to find out).

But these distinctions also come from a privileged position. It's easier to theorize about my tumor than to live knowing it not only still exists but isn't curable. 

And so to some better-informed people, the idea that I had ever stopped medication to prevent recurrence, was sort of reckless. 

I don't need to guess about that either. I already know my oncologist had been worried about me leaving hormonal therapy in the fall, even if she didn't fully explain her fears until this week. (She indicated she didn't think I would listen back in the fall, that I was so frustrated with so many things going on with treatment, I would have disregarded her advice. She could be right about that).

And, I have a friend who lives with metastatic breast cancer, who called to tell me how relieved she is to hear that I am going back on drugs to prevent recurrence. 

Because while I have the freedom to hate to deal with the health care system, my friend has no such choice. Her only option at this point is to manage her disease. 

So, she's on a lifetime regimen of drugs, fear and scans. 

"I know the hot flashes are bad," my friend said about hormonal therapy. "But this is on a whole other level... And the drugs often make me sick, and I've changed physically, and so on. But I just deal with it."

And I guess that's ultimately why the health care system is so bad, isn't it? Most of those who survive it are simply happy to still be alive. 

1 评论

My wife passed away in 2006 after a five year battle with breast cancer that was cured in one area and spread to others. This was a severe shock to me but I knew it was coming, I described our journey as a run away train ride; not knowing what the next stop would be or possibly the destruction of us. I retired several years later and had time to explore the internet where I ran into your posts on the battle you were in. i would see your posts weekly and reflected on myself. I prayed for you and still do. I support you in your battle.

Al 二月012024