A new article in our Journal of Participatory Medicine provides a compelling example: A Physician’s Experience as a Cancer of the Neck Patient: The Importance of Patient Participation. The author, Itzhak Brook MD, makes our point:

I am telling my personal story in the hope that health care providers will realize the difficult challenges faced by a patient diagnosed with cancer and undergoing extensive surgeries. I am also discussing the importance of active participation of the patient and their family members in all phases of care.

JoPM co-editor Charlie Smith adds, in his introductory note: (emphasis added)

You may wonder why a physician’s account of his illness and the frustrations he experienced merit publication in this journal. But, if a doctor has this degree of anxiety, this much difficulty getting information about his care and this degree of struggle making good decisions, then patients can easily understand why they feel so overwhelmed and incapable, at times, of truly “participating” in their own care. What we are advocating for is difficult in the best of circumstances and requires all hands on deck for the task!

I – and many other patients – know exactly what Dr. Brook means when he says:

…both of these approaches [physicians who acted "half full" and "half empty"] deprived me of being truthfully and fully informed about my prognosis, which is essential for making logical choices concerning treatment. I preferred those who told me the truth about risks and my prognosis, even if it was not rosy. I always voiced my preference to the physicians so that they would be aware of my wishes and so we could, hopefully, develop a trusting relationship.

When his radiation oncologists failed for five days to get the machine fixed or send him somewhere else, he asserted himself and did get sent elsewhere. He writes, “This lack of initiative left me feeling that they were indifferent to my plight.” That too will sound familiar to some.

Then, when he reported side effects and needed to be cared for:

“I needed the doctors to be there for me but, instead, they left me feeling like I was pestering them with trivial issues and complaints. Everything was so new to me. I was concerned and worried about my symptoms and looked to them for advice on how to cope. I also needed reassurance that these were expected symptoms and that they would go away afterwards. Fortunately, I found receptive ears and helpful advice from the clinic nurse.”

In my speeches I often start by saying, “Patient is not a third person word. Your time will come.” What a great example this narrative is.

There’s much more in the full article. Please, patients and providers alike, read the whole thing and think about when your time will come.

Cheryl Greene is third from the left in the banner at top of this blog. She’s a long-time friend of our founder “Doc Tom” Ferguson, a board member of the Society for Participatory Medicine, executive producer of DrGreene.com (AMA: “the pioneer physician web site on the Internet”), and oh yeah, wife of Alan Greene MD.  And a heck of an e-patient, starting ten years before I ever had a CAT scan.

This stuff matters. These are stories of real lives facing lethal threats. As you read this, try to immerse yourself in the experience of someone who tried for 15 years to get pregnant, gave birth, faced a magnificent and much-longed-for future, and was suddenly told she had months to live.

This is real. And now, like many e-patients, she’s paying it forward.

Cheryl has just passed a phenomenal milestone. Here’s her story, cross-posted from DrGreene.com last month.

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This September8, I went to my doctor for my annual physical. I’m very diligent about getting my regular checkup because I have a history…

On March 22, 1996 I was diagnosed with stage three inflammatory breast cancer and this doctor, my gynecologist, has been with me the entire time – she was my doctor even before the diagnosis, back when I was struggling with infertility and trying to have a baby. She was the very person who diagnosed the breast cancer. She is a phenomenal physician and a very trusted advisor, and now she is a friend.

And this year, my doctor, my friend, looked at my charts and my paperwork, then turned to me and said some of the most beautiful words I’ve ever heard: “We can now call you cured.”

My breast cancer is gone. Done. Over. Nonexistent. We don’t have to use words like “remission” or “no evidence of disease” or talk about a “probability of recurrence.” This cancer that almost took me away from my children and my husband is truly cured. And just as I remember that day in 1996 when this same woman told me I had a deadly form of breast cancer, I will forever remember the day she told me I was cured.

I want to tell my story publicly for a number of reasons.

• First, my diagnosis of breast cancer was one of the reasons Dr. Greene and I changed our lifestyles and dedicated ourselves to sharing health information via DrGreene.com.
• Second, my experience as a cancer patient taught me important lessons about how patients need to participate in their own healthcare.
• And third, because I want to spread the word that people can live through a fatal diagnosis, even when the odds seem overwhelming.

My doctor told me that when she talks to other women with breast cancer, she calls me her poster child. What I had was supposed to be fatal, and if I can beat that cancer, others can, too.

Getting the Diagnosis: All You Hear is “Cancer”

I tried for 15 years to get pregnant, and when I was told that we should prepare to welcome a baby boy, I was determined to do everything right. I was prepared for the challenges of breastfeeding, but it turns out that my son and I were the perfect nursing pair. He did a great job of latching on and drinking, and I did a great job of producing “liquid gold.”

Then I developed a breast infection. Many nursing women have them – painful, but no big deal. I felt a lump that seemed like a clogged milk duct. But when the infection went away, the lump stayed, so I went back to the doctor.

The doctor came in and examined me. My son, then 9 months, was on my lap, and she laid one hand on my breast. Then she said abruptly, “Ok, you can get up now,” and started ordering tests. Later she told me she knew what the lump was as soon as she touched me.

I was very lucky. From the time I had the breast infection to the time I had the definitive diagnosis was six weeks. Breast cancers in breastfeeding women are rarely diagnosed this quickly because the breasts are so lumpy when you’re nursing.

But when the surgeon came in and told me I had breast cancer and I had to stop nursing, all I heard was, “YOU HAVE TO STOP NURSING.” I didn’t listen to the details about how serious this cancer was.

When you’re diagnosed with something that’s really devastating, there’s only so much you can hear. For me it was that I couldn’t breastfeed any more. All I could think of was, “How will I feed my baby?”

A couple of months later, I sat in my oncologist’s office and received more bad news. He was talking about treatment and told me I had only months to live. But before he told me my prognosis, he told me, “YOU HAVE TO HAVE REALLY STRONG CHEMOTHERAPY AND YOU ARE GOING TO LOSE YOUR HAIR.” That’s all I heard.

If you are close to someone who has just received very tough news, she may not realize what the actual news is yet. One of the best gifts you can give this person, besides just being there, is to accompany her to the doctors’ offices and write down everything the doctors and nurses communicate. Then give the patient some time to digest the big news and schedule a quiet time to go over the other details. This is a very vital service a caregiver can provide for a patient in need.

Getting Treatment: How I Became an e-Patient

When I started treatment, my goal was to make sure the medical staff thought of me as the perfect patient. I was going to do exactly what they said to do and follow all the rules – and I was going to be happy about it.

The first six or seven months, that was the way I operated. I went through chemotherapy and a lumpectomy. At one point the team decided I should have a port implanted in my chest so the drugs could be administered without needles in the arm.

I preferred to undergo the surgery under conscious sedation to implant the port because I didn’t seem to recover as quickly when I was fully sedated for a surgery. The anesthesiologist was someone I knew, and we were talking before the surgery. Then they put the drape up between my face and the surgical field so I couldn’t see where they would be cutting. I was still very aware of what was going on even though I couldn’t see it or (theoretically) feel the surgery. I heard the anesthesiologist say, “Ok now – no whining.” I steeled myself, “I’m going to be good and I’m going to be strong and I’m not going to whine.”

But the surgery was not what I expected at all. During one part of the procedure, when the surgeon was using what seemed like a hammer and chisel to pound the port in place inside my chest, I didn’t think I could take it. I was trying so hard to be strong, but it was awful and I felt like passing out. But I didn’t whine.

After the procedure, I told the anesthesiologist how hard it had been. And his face contorted and turned white. “Why didn’t you tell me?” he said, upset. “It’s my job to make sure you’re comfortable!”

“But you said, no whining,” I replied.

I was shocked when he said, “But I was talking to one of the nurses.”

Light bulbs went off. Right then I realized that I was the only one in the room who had information about how I was feeling, and it was my job to communicate that. I needed to stop being a compliant, non-complaining patient. I needed to speak up and share the information about what was going on inside my body with the rest of the people who were working with me to try to fix it.

In the course of the next six to seven months, I completely changed how I interacted. I learned how to give myself a shot I had to take daily so I didn’t have to wait on a nurse or get an appointment. I worked with my doctor on a daily plan for my medication, which needed to be adjusted regularly when we were trying to figure out what would work. I had gotten to the place where I knew what I needed. My doctor was reviewing my suggestions, but I was making decisions. I credit that engaged, that empowered, behavior as one of the reasons I was cured.

Enduring the Journey, Finding the Cure

I started off with the strongest Western medicine available, and at the end of my treatment, I was in a very vulnerable position. The cancer was gone, but the first year after treatment has the highest risk of recurrence. And cancer that comes back during this time usually spreads very quickly and is very resistant to more treatment.

I decided I wanted to be as involved as I could in attacking this thing. I found about a trial at Stanford that the coordinators were having trouble finding participants that fit the critera. You had to have been diagnosed with stage three or stage four breast cancer, and you had to be done with treatment with no evidence of the disease. The hard truth is that they couldn’t find many eligible patients because there weren’t many of us who were surviving this disease. When I was first diagnosed Alan tried to find people online with my cancer, and he couldn’t find anybody. He just kept finding memorials for people.

So I enrolled in the FGN1 trial at Stanford. I knew I had a 50/50 chance at getting the drug, but either way, I was determined to do it. Either I got the drug, and perhaps got help, or I didn’t and hopefully helped others.

The trial was an 18-month chemotherapy treatment, but I knew right off that I was getting the actual drug and not a placebo because I had to be hospitalized because of the side effects. They adjusted my dose a couple of times because I was so sick with the side effects, and they actually asked me if I wanted to drop out. But I wound up completing the trial because I wanted to help find a treatment that would help more people than the conventional chemo.

After the trial, the doctors told me that of the six women at Stanford who were on the trial, several on the placebo had recurred and one had died. At that time the cancer had not come back in those of us who received the actual drug. I haven’t been able to track down any of the other women in the study, soI don’t have any long-term data. Unfortunately the side effects turned out to be too serious to take the drug to market, but I’m grateful I persevered and got the full treatment.

There’s no doubt that the chemotherapy is one of the major reasons I’m here to tell my story today, but I’m fully convinced that my mindset played just as significant a role. When I was diagnosed, I didn’t absorb their message that I was going to die. I heard what they were saying, but I was convinced that the fatal diagnosis didn’t really apply to me. At the same time, I can remember realizing that I needed to live every moment to the fullest.

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Humans are capable of two diametrically opposed ideas at the same time. I remember one morning in particular waking up and feeling totally exhausted. I felt tired on the cellular level, and all I wanted to do was just turn over and go back to sleep. But I said to myself, “You may never feel better than you do right now, so get up and get dressed and go play with that baby.” I remember feeling like I didn’t really accept this diagnosis and that I was going to make it, yet coming to the conclusion that I needed to live every moment because they might not come again.

That combination really served me well. And the take home lesson for me was that it is really important to live today and not miss today. I really learned to take advantage of opportunities… to seize the day.

What are you doing today to live this day to the fullest?

Life after Breast Cancer

Although it was just a couple of weeks ago when my doctor looked me in the eye and called me cured of the breast cancer that had almost ended my life, I’ve actually considered myself free from cancer for quite some time. When I was diagnosed, Alan and I took a serious look at our lifestyles and our environment and made significant changes that last through today. We share many of our insights on the benefits of healthy living here on DrGreene.com, and we’ve come to embrace our good health and to enjoy our good days.

I fully believe that some of the healthiest people in the world are those who are living with a chronic disease and managing it well. Those of us who have gone through a life-changing threat to our existence have sought out information about the world we live in, the food we eat, the air we breathe… we want to do anything and everything we can to regain and maintain our health.

People with diabetes who watch what they’re eating and control their disease with diet and exercise are healthier than most disease-free folks who eat junk food and spend their evenings on the couch. People with asthma who avoid second-hand smoke are exposed to fewer toxins. We survivors of diseases just seem to be more aware of what keeps us healthy and what will make us sick because if we don’t pay attention, the repercussions could be very serious.

____________

Some days I’m really angry about what cancer stole from me. I was breastfeeding one day and two months later I’m in full menopause with hot flashes because of the chemotherapy. It was insult to injury because I hoped to have another child at that point. During my treatment I opted to do everything I could to keep my breasts because I fully believed I would nurse again.

But the anger about the cancer doesn’t come close to the happiness about the cure. I was diagnosed with stage three inflammatory breast cancer. The chances that I would survive were very, very small. But survive I did, and, as another cancer patient once said to me, “Today is a great day to be alive.”

Keith turned his experience into a consumer call to action (and a business plan) by founding Trusera.com. Here is his e-patient story…

1) The term “e-patient” describes individuals who are equipped, enabled, empowered and engaged in their health and health care decisions. And naturally the “e” also stands for electronic. Would you identify as an e-patient? Is there another term you’d use?

By this definition I would definitely identify as an e-patient. I consider myself as part of a broad, accelerating movement to put more control of the consumer’s health experience in their hands using the power of technology.

The term I prefer, however, is “engaged health consumer.” Increasingly, consumers are taking charge of their health by finding health information that relates to their personal context in order to make personal health decisions. Today’s consumer has clear unmet health needs and wants to do something about them.

This is evidenced by your work Susannah at Pew Internet and studies such as Deloitte’s 2008 health consumer survey that showed that 41% of health consumers have medium to high engagement with the health system and another 28% rely more upon themselves than their doctors.

I believe we are at the beginning of a huge wave of this self-interested, highly involved consumer behavior, especially as baby boomers age. They have experienced huge, positive changes in their consumer lives that have given them more control of their life experience and expect the same when they face health and wellness issues.

For me, the term “patient” implies a more passive role for the consumer in their health journey. Webster’s defines a patient as: 1a) an individual waiting or under medical care and treatment; b) the recipient of any of various personal services; 2) one that is acted upon. I believe the ethos of the online health consumer today is quite different. He or she is actively seeking and stitching together fragmented pieces of data from their doctor, the Internet, and people who’ve been through it and trying to assemble them into a framework that relates to their personal context and preferences. Why should a consumer have more information about their next automobile purchase than they would about a health or wellness issue they are facing that requires action on their part?

Viewing the engaged health consumer as at the center of their customer experience, rather than a passive participant in the health value chain is a sea change in how the current US health system operates today. As I very much like your concept of equipped, enabled, empowered and engaged, perhaps we can split the difference and call them “e-health consumers”!

2) Were you always this engaged in your health care, or did your experience with Lyme disease trigger it?

Like many people, I was not highly engaged in my health care through my 20s. I became interested and engaged in prevention and wellness in my 30s when I became a parent of two young boys, and my experience with Lyme disease triggered my deeper involvement and taught me a valuable lesson: You must be the number one advocate for your own health and for others’ health if you are in a caregiver role.

No one else will play this role for you – not your primary physician or any other health professional. In my experience, I lacked access to the people, tools, and information that could have helped me get treatment sooner and that would have been more personalized to my health situation. As the director of quality at a leading Seattle-based hospital system said to me personally, the specialized U.S. medical system failed me. Each of the 11 doctors who failed to diagnose me played the role of a highly specific hammer, and I was a very targeted nail in their caseload. Being wrongly pressured to submit to brain surgery to address a mere symptom of my still-undiagnosed Lyme is one great example of this.

After I was diagnosed, I turned to the Internet and other people who had been through the experience. But I found information on the Internet to be either broad and generic expert information that I couldn’t apply to my personal situation or consumer-generated content whose relevance, credibility, and usefulness was hard to assess. I love scaling great consumer ideas and technologies, so I started to wonder whether my situation was unique.

3) Was there a light bulb moment for you when it comes to online engagement and health care? If there wasn’t just one moment, can you cite an example of how the internet played a crucial role in your care or the way you take care of someone else?

I had two light bulb moments. My first one was when I received a call from the wife of a friend while I was in the midst of debilitating physical pain and exhaustion after almost three months of suffering the symptoms of Lyme. This friend had heard through the grapevine that I was suffering facial paralysis, fatigue, and severe muscular and skeletal pain, and said she had had similar symptoms when she contracted Lyme in Connecticut in the 1980s. “Go to your doctor and get checked out for Lyme,” she said. The next week she was proved right by a wonderful rheumatologist. Her call changed my outcome and my life – just a week or two more and I would have been firmly ensconced in late-stage Lyme disease, a prospect that can have lifelong implications as a serious chronic illness.

I thought to myself: How could I have better accessed my personal network and the network of others whom I trusted over the past three months to leverage that collective experience? Also, how could crowd sourcing with even more people have helped accelerate my path to a proper diagnosis and help me make a decision about the proper treatment for me? Throughout the process, I kept wishing I knew five people in the Pacific Northwest who’d been through this and many more who’d tried different approaches to treatment.

My second light bulb moment came a few months later as I was getting back to health from the Lyme. While playing tennis, I tore two discs in my neck that were pressing against my spinal cord. I was told I was at risk of being paralyzed from the neck down if I stepped off a curb wrong, tripped on the stairs, or lifted my 3-year-old. An orthopedic surgeon scheduled emergency spine fusion surgery and gave me two hours to make a decision to proceed. Although the injury was real and I was in tremendous pain, this sounded a little too familiar to the craniotomy I was offered six months prior when I had Lyme. I decided to defer spine fusion surgery until I had more information and more control of my process.

I made it my full-time job to find the right treatment. I started to work my personal network and got connected to a friend of a friend who had flown to Germany and received an artificial disc replacement (ADR) that preserved his spine’s function. I researched this option through PubMed and connected online to others who’d been through the surgery, which was in FDA trials in the United States. I connected to doctors all over the world in considering this and other possible avenues. My motto was, “no stone left unturned.” Three months later I had successful ADR surgery in Germany with the leading spine surgeon in the world.

All the while I was thinking: Why is this so hard? And if it’s this hard for me, what’s it like for a single mother who’s supporting two kids by herself without the time and the resources to do the extensive research that I did?

4) You have an MBA and an impressive background as an executive at both Amazon.com and McCaw Cellular. But a quick search on your name turned up another past role, as a member of a Gilbert & Sullivan troupe (unless there is another Harvard-educated Keith Schorsch out there). First, did your business acumen help or hinder the way you dealt with your diagnosis and treatment? Second, did your theater experience (or any other personal talents or skills) come into play?

Thank you for your kind words. I do admire your research skills, Susannah! My business experience helped me a great deal. Visioning success is a big part of doing well in business and served me well at Amazon, McCaw/AT&T Wireless, and now, Trusera. To execute on my vision of getting back to health, I approached my health situation as a problem to solve and assumed that the right answer for me was out there. I just had to be willing to work hard and creatively to find the right path for me.

You put a smile on my face when you mentioned Gilbert & Sullivan. In college I evolved from a some-time journalist to a full-fledged theater producer, producing Shakespeare, G&S, and other productions. For me being a producer was about assembling the cast, crew, and resources to create something of value for the community.

I think my theater experience came into play with my diagnosis and treatment in that I employed a lot of creative and out-of-the-box thinking to solve my problem. I approached resources and assembled information with an open mind, and in doing so, discovered the benefits of integrating European, Eastern, and naturopathic medical treatments along with evidence-based Western medicine. This helped a great deal in getting back to health faster than I normally would have had I chosen to follow only Western medical protocols.

In the end, persistence, an inquiring mind, management skills, and a willingness to challenge conventional wisdom gave me the answers that were right for me and allowed me to be equipped, engaged, empowered, and engaged – in short, at the center of my health experience and not a mere participant or actor in a drama played on the “stage” of our health system.

My message is this: Don’t let health happen to you; take charge of your health and find the answers you need that fit your personal context, preferences, and needs.

(Read more e-patient stories.)