Against Medical Advice

Human pink ribbon 2005

Against Medical Advice
By John Unger Zussman

A woman I’ll call Bonnie sat in the exam room with her husband, waiting for her oncologist. They held hands without speaking, wearing thin, brave smiles.

(I’ve given Bonnie a pseudonym, and refrained from identifying my relationship to her, out of respect for her privacy. Suffice it to say we are close.)

Three months earlier, after a suspicious mammogram, a biopsy came back positive. Bonnie had a malignant breast tumor.

The diagnosis was a shock to Bonnie, who had no history of cancer in her family. She had to learn to cope with her brand-new reality. But watching someone I love face cancer set off land mines in my brain. My father died from rhabdomyosarcoma at age 35, when I was ten; my sister died of breast cancer at 45. My mother survived breast cancer in her 30s and spindle-cell sarcoma in her 70s, just after my adoptive father (her second husband) was treated for prostate cancer.

So I lived with a sword hanging above my head, expecting that someday I’d have to face that diagnosis myself. Once, my doctor’s office left a message on a Friday asking me to repeat a Hemoccult test. I spent an angst-filled, sleepless weekend convinced I was dying of colon cancer. It turned out that only one of the three samples had read positive—a fairly common occurrence—and the retest came out normal. Still, cancer is my demon, and Bonnie’s cancer let it loose.

The doctors put Bonnie through an exhausting battery of X-rays, MRIs, and CT scans to find out how much it might have spread. Meanwhile Bonnie worked her way through denial, anger, and depression, the first three stages of grief. She scoured the Internet medical sites and joined her local breast cancer support center.

After all the test results were in, her surgeon arranged for her to appear before the tumor board at his hospital, a celebrated university cancer center. First, a group of surgeons and oncologists came in to examine her. “It was strange, sitting there,” Bonnie’s husband said later, “as that parade of medical people took turns feeling her up.” Then she waited while the doctors reviewed her case.

Finally, they met with the hospital’s top breast cancer expert. He presided over the tumor board and was to be her oncologist.

“We’ve reviewed your case,” he told Bonnie, “and we all agree. If your surgery goes as we expect, you’re going to go through six months of hell. But then you’ll be fine.” Although the tumor was small, he explained, it was an aggressive type and might have spread to her lymph nodes. She would probably need radiation followed by chemotherapy.

Bonnie looked at her husband uneasily. She dreaded the thought of radiation and chemo, which had taken a physical and emotional toll on every breast cancer patient she knew.

As Bonnie’s lumpectomy date approached, she moved on to bargaining. Her research said that if her lymph nodes were not affected—that is, if she had stage 1 cancer— she would probably need no chemo, maybe not even radiation. And the less stress she subjected her body to, the better.

Bonnie’s hopes were fulfilled when the surgeon brought good news. She had caught it early. The tumor was small, the surgical margins were clear, and no lymph nodes were affected. Her cancer was only stage 1, and the surgeon was confident he had gotten it all.

Relieved, she settled into acceptance. And now, a few weeks later, she and her husband looked up as her oncologist entered her exam room and sat down. He congratulated her on her successful surgery and her positive test results.

And then he dictated a full course of radiation followed by aggressive chemotherapy.

This wasn’t what Bonnie had bargained for. She questioned him, but he was relentless. He couldn’t be sure that some cancer cells hadn’t escaped or that they wouldn’t metastasize. And that’s what you really want to avoid, he said. When she continued to resist, especially the chemo, he became defensive. “Why are we having this conversation if you’ve already made up your mind?” he demanded. He wasn’t used to mere patients questioning his authority.

Finally, Bonnie asked directly, “What if I go without chemo?”

“It’s risky,” he replied, “I wouldn’t recommend it.”

“What if I skip radiation?”

“I’ll strap you to the table.”

Bonnie doesn’t cotton to being told what to do. “I don’t believe in hell,” she said later. She quickly regressed back to anger—and stayed there.

The first thing she did was fire her oncologist. She couldn’t believe the good results had not altered his treatment plan even a millimeter. “I want a doc who’ll treat me, not my cancer,” she said.

I tried to be supportive, but challenging medical authority is not my nature. I didn’t even know you could fire your oncologist. I wanted her to explore every avenue, use every medical weapon to beat this disease. Foregoing further treatment seemed a great risk, tempting fate, taking a chance with her life. Of all my fears, this was the oldest and most devastating. Bonnie’s cancer unleashed my demons and awakened my nightmares.

Bonnie stepped up her research and sought a second opinion. She also got access to a website, widely used by medical professionals, that estimates the risk of breast cancer relapse and mortality based on characteristics of the patient, her tumor, and potential chemotherapy.

And when she described that research, to my surprise, it was my mind that began to change. Bonnie’s prognosis was good no matter what she did. Radiation would cut the chance of recurrence, but it would have no effect on her survival and might cause long-term heart damage. Chemo would increase her chance of survival by a few percent, but she would be flooding her system with poisons that would cause nausea, hair loss, and the possibility of long-term cognitive and systemic impairment. That made her decision easy: no radiation, no chemo.

Her surgeon, whom she liked and trusted, tried to dissuade her. “What will happen,” he asked, “if the worst happens and you get a recurrence or even a metastasis? How will you feel then? Won’t you regret this?”

“Not for a minute,” she said without hesitation.

We often talk about patients waging a “courageous battle with cancer.” This usually means they try every means available, suffer every side effect, in the attempt to conquer their disease. But it also takes courage to forego treatment—to understand the odds and trust them, to know your own body and what’s best for it, to realize that, for you, the treatment might be worse than the disease.

Most cancer professionals are courageous too, and dedicated. They take their best shot and watch their patients die and then have to come back the next day and do it all again. It’s no wonder that they want to use every possible tool to beat this damn disease.

So they develop a standard treatment and apply it across the board. No doubt this is partly dictated by insurance and liability concerns. “Radiation? Of course you want radiation. It reduces the risk of recurrence by 40% or more.” But when that risk is low to begin with, when it doesn’t increase your chance of survival, and when you add the risks of radiation itself—the choice is far from obvious. Women need the option to make their own decision.

In the end, ironically, it’s not the oncologists’ job to cure cancer. Their job is to treat their patients—and it’s not the same thing.

Twenty-one months later, Bonnie is both healthy and steadfast, without a moment of doubt or regret. The odds are in her favor. I try not to second-guess her, even if I know that disaster might lurk in every screening exam and mammogram, even if just writing these words seems like tempting the gods. It’s her body and her decision, not her doctor’s.

The health care establishment and the breathless media sometimes tout new treatments as medical miracles. But they have risks and cause damage, which have to be weighed against their benefits. I hope to explore this calculus in future posts, and explore what it’s taught me about medicine and the state of our culture. I’ll also describe the ways Bonnie has chosen to manage her risk of recurrence and metastasis. She is not going gentle unto that good night.

Please note that I am not a medical doctor (nor do I play one on TV), so my reflections are meant to be descriptive and not prescriptive. I wouldn’t pretend to tell anyone else what to do. I invite your comments and, especially, your own stories.

Shortly after Bonnie made her decision, she learned that her original oncologist was running a clinical trial with, coincidentally, the same chemo medications he prescribed for Bonnie.

By that time, Bonnie had found a new oncologist. He gives her options, not orders.

Copyright © 2010 by John Unger Zussman. All rights reserved.

Against Medical Advice By John Unger Zussman   A woman I’ll call Bonnie sat in the exam room with her husband, waiting for her oncologist. They held hands without speaking, wearing thin, brave smiles.    (I’ve given Bonnie a pseudonym, and refrained from identifying my relationship to her, out of respect for her privacy. Suffice it to say we are close.)   Three months earlier, after a suspicious mammogram, a biopsy came back positive. Bonnie had a malignant breast tumor.    The diagnosis was a shock to Bonnie, who had no history of cancer in her family. She had to learn to cope with her brand-new reality. But watching someone I love face cancer set off land mines in my brain. My father died from rhabdomyosarcoma at age 35, when I was ten; my sister died of breast cancer at 45. My mother survived breast cancer in her 30s and spindle-cell sarcoma in her 70s, just after my adoptive father (her second husband) was treated for prostate cancer.    So I lived with a sword hanging above my head, expecting that someday I’d have to face that diagnosis myself. Once, my doctor’s office left a message on a Friday asking me to repeat a Hemoccult test. I spent an angst-filled, sleepless weekend convinced I was dying of colon cancer. It turned out that only one of the three samples had read positive—a fairly common occurrence—and the retest came out normal. Still, cancer is my demon, and Bonnie’s cancer empowered it.   The doctors put Bonnie through an exhausting battery of X-rays, MRIs, and CT scans to find out how much it might have spread. Meanwhile Bonnie worked her way through denial, anger, and depression, the first three stages of grief. She scoured the Internet medical sites and joined her local breast cancer support center.   After all the test results were in, her surgeon arranged for her to appear before the tumor board at his hospital, a celebrated university cancer center. First, a group of surgeons and oncologists came in to examine her. “It was strange, sitting there,” Bonnie’s husband said later, “as that parade of medical people took turns feeling her up.” Then she waited while the doctors reviewed her case.   Finally, they met with the hospital’s top breast cancer expert. He presided over the tumor board, and was to be her oncologist.    “We’ve reviewed your case,” he told Bonnie, “and we all agree. If your surgery goes as we expect, you’re going to go through six months of hell. But then you’ll be fine.” Although the tumor was small, he explained, it was an aggressive type and might have spread to her lymph nodes. She would probably need radiation followed by chemotherapy.    Bonnie and looked at her husband uneasily. She dreaded the thought of radiation and chemo, which had taken a physical and emotional toll on every breast cancer patient she knew.    As Bonnie’s lumpectomy date approached, she moved on to bargaining. Her research said that if her lymph nodes were not affected—that is, if she had stage 1 cancer— she would probably need no chemo, maybe not even radiation. And the less stress she subjected her body to, the better.   Bonnie’s hopes were fulfilled when the surgeon brought good news. She had caught it early. The tumor was small, the surgical margins were clear, and no lymph nodes were affected. Her cancer was only stage 1, and the surgeon was confident he had gotten it all.   Relieved, she settled into acceptance. And now, a few weeks later, she and her husband looked up as her oncologist entered her exam room and sat down. He congratulated her on her successful surgery and her positive test results.   And then he dictated a full course of radiation followed by aggressive chemotherapy.    This wasn’t what Bonnie had bargained for. She questioned him, but he was relentless. He couldn’t be sure that some cancer cells hadn’t escaped or that they wouldn’t metastasize. And that’s what you really want to avoid, he said. When she continued to resist, especially the chemo, he became curt. “Why are we having this conversation if you’ve already made up your mind?” he demanded. He wasn’t used to mere patients questioning his authority.   Finally, Bonnie asked directly, “What if I go without chemo?”    “It’s risky,” he replied, “I wouldn’t recommend it.”    “What if I skip radiation?”    “I’ll strap you to the table.”   Bonnie doesn’t cotton to being told what to do. “I don’t believe in hell,” she said later. She quickly regressed back to anger—and stayed there.    The first thing she did was fire her oncologist. She couldn’t believe the good results had not altered his treatment plan even a millimeter. “I want a doc who’ll treat me, not my cancer,” she said.   I tried to be supportive, but challenging medical authority is not my nature. I didn’t even know you could fire your oncologist. I wanted her to explore every avenue, use every medical weapon to beat this disease. Foregoing further treatment seemed a great risk, tempting fate, taking a chance with her life. Of all my fears, this was the oldest and most devastating. Bonnie’s cancer unleashed my demons and awakened my nightmares.   Bonnie stepped up her research and sought a second opinion. She also got access to a website, widely used by medical professionals, that estimates the risk of breast cancer relapse and mortality based on characteristics of the patient, her tumor, and potential chemotherapy.   And when she described that research, to my surprise, it was my mind that began to change. Bonnie’s prognosis was good no matter what she did. Radiation would cut the chance of recurrence, but it would have no effect on her survival and might cause long-term heart damage. Chemo would increase her chance of survival by a few percent, but she would be flooding her system with poisons that would cause nausea, hair loss, and the possibility of long-term cognitive and systemic impairment. That made her decision easy: no radiation, no chemo.    Her surgeon, whom she liked and trusted, tried to dissuade her. “What will happen,” he asked, “if the worst happens and you get a recurrence or even a metastasis? How will you feel then? Won’t you regret this?”   “Not for a minute,” she said without hesitation.    We often talk about patients waging a “courageous battle with cancer.” This usually means they try every means available, suffer every side effect, in the attempt to conquer their disease. But it also takes courage to forego treatment—to understand the odds and trust them, to know your own body and what’s best for it, to realize that, for you, the treatment might be worse than the disease.   Most cancer professionals are courageous too, and dedicated. They take their best shot and watch their patients die and then have to come back the next day and do it all again. It’s no wonder that they want to use every possible tool to beat this damn disease.    So they develop a standard treatment and apply it across the board. No doubt this is partly dictated by insurance and liability concerns. “Radiation? Of course you want radiation. It reduces the risk of recurrence by 40%.” But do the math. When that risk starts at 5%, when radiation reduces that risk (by 40% of 5%) to 3%, when it doesn’t increase your chance of survival, and when you add the risks of radiation itself—the choice is far from obvious. Women need the option to make their own decision.   In the end, ironically, it’s not the oncologists’ job to cure cancer. Their job is to treat their patients—and it’s not the same thing.    Twenty-one months later, Bonnie is both healthy and steadfast, without a moment of doubt or regret. The odds are in her favor. I try not to second-guess her, even if I know that disaster might lurk in every screening exam and mammogram, even if just writing these words seems like tempting fate. It’s her body and her decision, not her doctor’s.    The health care establishment and the breathless media sometimes tout new treatments as medical miracles. But they have risks and they cause damage, which have to be weighed against their benefits. I hope to explore this calculus in future posts, and explore what it’s taught me about medicine and the state of our culture. I’ll also describe the ways Bonnie has chosen to manage her risk of recurrence and metastasis. She is not going gentle unto that good night.   Please note that I am not a medical doctor (nor do I play one on TV), so my reflections are meant to be descriptive and not prescriptive. I wouldn’t pretend to tell anyone else what to do. I invite your comments and, especially, your own stories.   Shortly after Bonnie made her decision, she learned that her original oncologist was running a clinical trial with, coincidentally, the same chemo medications he prescribed for Bonnie.   By that time, Bonnie had found a new oncologist. He gives her options, not orders.

About John Unger Zussman

John Unger Zussman is an award-winning screenwriter, creative writer, and technical writer from Portola Valley, California. His essays have been published in The Sun Magazine. He has won a Grammy Award (as a member of the San Francisco Symphony Chorus), but there’s room on the shelf for an Oscar and a Pulitzer. John also works as a corporate storyteller in info and biotech and holds a PhD in Psychology from Stanford University.
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10 Responses to Against Medical Advice

  1. John, what you’ve written is so important. I applaud what Bonnie is doing, and I have a friend in just her circumstances who is doing the same thing–and like Bonnie is, two years after diagnosis, doing fine. She did have some radiation, but no chemo, and she was assertive with her doctors (which isn’t easy) and feels very clear that her quality of life is worth the risk it involves, which in her case is small. You are right that cancer patients need to know there’s some choice in these matters, and that their doctors shouldn’t be dictators. (Interesting about the clinical trial!)

    –Jeannie

  2. jzussman says:

    Jeanne, thank you for your kind words about the post, and best of luck to your friend. That’s one reason I “went public” with Bonnie’s story (and why Bonnie consented) — to give others support in taking charge of their own medical decisions.

    John

  3. John, thank you for sharing this important story with others. As a medical professional, I know that sometimes no medical treatment is a BETTER choice than treatment. Sometimes it’s not. But, as you point out, no matter what, the manner in which any illness is treated is ultimately the patient’s choice. There are a lot of people in the medical profession–my coworkers–that would like to believe otherwise. Stories like Bonnie’s serve to remind us that more often than not, true peace resides in being allowed the power to choose one’s fate–rather than to have it chosen for one– and often it is the choosing, rather than the choice itself, that allows us to feel comfortable with our paths.

    • jzussman says:

      Jane, thank you for contributing the benefits of your medical experience. Many women in the same situation as Bonnie might have made the exact opposite choice, desiring to minimize the chance of a recurrence. Even Bonnie, in different circumstances, might have chosen to treat her cancer more aggressively. The point is that it IS a choice — to understand that treatments have risks as well as benefits, to realize that different women will weigh the risks and benefits differently, and to know that empowering patients to make that choice is itself a positive medical outcome. I hope that insight will spread from nurses like you, who understand it instinctively, to other medical professionals as well.

      John

  4. Karen says:

    Hi John,

    Wow! This was great for me to hear. I am 18 months clear of breast cancer. I, like Bonnie, decided not to do the treatment that was suggested to me by two different oncologists. I also had stage 1, grade 1 (non aggressive) breast cancer. I also was node negative. My tumor was very small and clear margins were achieved by surgery.
    Chemo was not offered to me. It was,however, suggested that I do radiation. I decided to do the radiation because my tumor was not near my lungs or my heart and would not effect those organs at all. I was lucky, the tumor was located on the side of my breast.
    My primary oncologist then suggested that I take 5 years of Tamoxifen. When I asked him “why do I have to do that, my tumor was so small and the cancer so low grade” he said “everyone takes Tamoxifen.” This is where the Doc and I went out separate ways…
    I then decided to go for a second opinion and was shocked with how the Doctor tried to manipulate me into taking the drug…she had the prescription pad in her hand! I decided not to take the Tamoxifen and trust MYSELF with MY LIFE. I can’t really think of any other person I’d trust my life with other than me…well me and God that is.
    Cancer is a very scary word and a very scary disease, but it doesn’t have to kill you and it does not have to make you feel hopeless. We can be cancer survivors without taking all these drugs and medications, without following a standard medical protocol. I will never see cancer again in my lifetime…I plan
    on being a very old lady by the time I pass. I will be a very happy, old,cancer free lady!

    Thanks John for the post…

    Karen

    • jzussman says:

      Karen, I’m touched by your story and by your kind words about my post. Like Bonnie, you are a courageous woman, and I wish you the best in your goal to remain cancer-free.

      Bonnie was also offered “prophylactic” tamoxifen, even though her cancer was estrogen- and progesterone-receptor negative. (As you know, tamoxifen only works on hormone-positive breast cancers.) The oncologist — Bonnie’s second, whom she likes — mentioned this possibility almost apologetically, knowing that Bonnie would be unlikely to accept it, but feeling that he would be irresponsible (if not legally liable) if he didn’t. We live in a world of cover-your-ass.

      Bonnie, of course, told him what he could do with his prophylactic tamoxifen. At which point he laughed.

      I watch the pharmaceutical ads on TV and see my aging parents with their medicine cabinets full of drugs, and I think we have forgotten that these are foreign substances that screw with our body’s natural mechanisms (that is their point). They have their place (when the body can’t do it alone), and some work miracles, but they all have side effects and can do harm. If we’re going to use them, we had better have a very good reason, and carefully weigh their benefits against their risks. I would like to elaborate on this in a future post.

      I hope you have found an oncologist you can trust, who can be your guide but not your drill sergeant. It would be scary, I think, to navigate this without the help of a medical expert.

      Again, I appreciate your comment and wish you the best of luck.

      John

  5. Kathryn LaMar says:

    Bonnie’s actions are straight out of the textbook of the Wellness Community. It’s called being patient-active, and basically puts her in the elite category of people considered “natural survivors”. The first steps are always learn as much as you can, and select a team that will work with you, but retain the right to make your own decisions. You’ll ALWAYS feel better when you are making what to you is the best decision–not just following along doing what the experts tell you. Right on, Bonnie!

    • jzussman says:

      Kathryn, thanks for your comment. I wasn’t aware of the Wellness Community, let alone their “textbook” (which I suspect you didn’t mean literally). Would you mind posting a bit more about this resource and and tell readers where we can find out more about it?

      John

  6. Karen says:

    Hey there John,

    I wanted to respond to your last post.Fortunately, my surgeon is the captain of my ship.
    She was the only Doctor that made me feel like I was going to be okay. The others used scare tactics. I needed someone to give me hope and assure me that there is life after cancer.
    She was very candid with me when she was not sure what exactly I had. That was the most difficult time for me. When we did find out, the prognosis was very good and we focused on that.
    I take aspirin most days.Cancer is an inflamatory disease,so I do the asprin. I feel good about that. I have also made some life style changes and lowered my stress. I believe that my cancer was caused by stress. Stress supresses your immune system. Cancer then has a chance to develop.
    Thanks for allowing me to respond to your post. It really helps to talk about this and get it out there.

    Karen

    • jzussman says:

      Karen, thank you for posting the additional information. It sounds like you have a good advisor and have taken your treatment into your own hands.

      To add to your anti-inflammatory and stress reduction efforts, I would suggest taking a look at diet as well. Both diet and exercise can boost your immune system’s effectiveness in eliminating residual cancer cells. Good resources include Anticancer by David Servan-Schreiber, MD, and Life Over Cancer by Keith Block, MD.

      We have a cancer epidemic in our country, and I have to believe that our factory-farmed, processed food — laden with fat, high-fructose corn syrup, hormones, antibiotics, and additives — is partly responsible. I hope to write more about this in a future post.

      Once again, best of luck. May you be cancer-free forever.

      John

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