An e-Patient is Born: Elyse Chapman’s story

One of the key learnings of my first year as a student of the e-patient movement, studying how healthcare is evolving, is this: People get radicalized when it gets personal.

This is one such story: it’s the e-patient awakening of a long-time personal friend of mine. Facing a painful medical crisis, she asked questions and carried out research that revealed options no one had told her about. By becoming an e-patient, she’s changed her future.

And what fascinates me, as we plan the new world of participatory medicine, is this: How does this awakening happen? What are the pivotal moments?



I met Elyse Chapman almost twenty years ago, on CompuServe’s Desktop Publishing Forum. In a very real sense, that was an online empowerment community: rather than taking the often-inadequate answers provided by software vendors, “we the people” banded together to talk about what WE needed to know.

A few years later Elyse and I met at a desktop publishing convention, where we cut costs: I shared a suite with Elyse and her husband Bruce. They lived near LA. Eight years ago they adopted their son Ben and four years later moved to Iowa.

Last August, Bruce was driving artwork to the printer at 6 a.m. for Elyse’s employer when over the hill came a pickup truck on the wrong side of the yellow line. He died instantly. Elyse is now sole support for herself and Ben.

Last month, experiencing extreme, out-of-the-ordinary cramps, she learned she had a large abdominal mass and would need a hysterectomy, major surgery that would require 6-7 weeks out of work. A strong woman (good Midwestern stock), she was willing to do whatever she needed to medically: she can handle it. The original finding was a 4″ mass, requiring open surgery since the docs said there was no way to tell whether they’d find cancer.

Elyse is familiar with my story and asked that fateful question faced by people with a critical diagnosis: “Where do I start?” She wanted to explore her options.

Fully supporting whatever her choice would be, I let her know about my own kidney surgery, in which a kidney with two large protruding tumors (attached to surrounding tissue) was removed through small slits, not the “open” nephrectomy that would have required 5-6 weeks recovery, like her proposed open hysterectomy. I asked if she’d like to explore such options.

While never once questioning her medical team, she agreed that would be good: not only is she sole support for her family, she’s a principal source of income for the small business that employs her.

Charlie Smith, M.D., is a member of our working group, and volunteered to talk to her. Charlie writes for the eDocAmerica blog, and he was “Doc Tom” Ferguson’s own physician, during the time when Tom was an e-patient himself, collecting extraordinary information that led to his outlasting his multiple myeloma prognosis by more than a decade.

As Elyse’s story unfolded in the next two weeks, I watched closely: it was my first opportunity to witness the birth of an e-patient, before my eyes. And as it unfolded, I experienced wonder and then joy at the process.

Later this week I’ll offer my thoughts. But first, here’s the post Charlie co-authored with Elyse on his blog. Please read and ask yourself, what’s unusual about this story? What happened here? What moments of realization occurred? What altered the outcome?


A Patient with a Uterine Mass:
The Case for Becoming an e-Patient

This article was co-authored by Elyse Chapman, who became an e-patient through the following process:

I recently became acquainted with a woman in Iowa, Elyse Chapman, who was concerned about her “fibroids”. Elyse was scheduled for a hysterectomy because of a very large, mass, probably a uterine fibroid, a benign but often problematic tumor of the smooth muscle fibers of the uterus. She had problems with excessive painful cramping, bladder pressure and a sensation of swelling and bloating in her abdomen.

A CT scan was ordered and showed a mass either on the ovary or uterus. The mass was so large that her doctors wanted to make sure that this was not a malignant tumor of the uterus or ovary. They had scheduled a total hysterectomy via exploratory laparotomy in 3 weeks and Dave was “consulting” with his online friends to see if anyone knew of a patient group with whom she could collaborate to see if there was an alternative to major surgery.

I volunteered to help. Shortly thereafter, I received an e-mail from Elyse and then gave her a call. I heard more details about her history, learned that she had lost her husband recently, and as a single parent, felt very shaky about the prospects of recovering from major surgery without help at home. She wondered why her doctors were so focused on performing a total hysterectomy and why she wouldn’t be a candidate for a laparoscopic approach. She also wondered if she really even needed to undergo surgery now, or could she safely wait and watch for a time.

Unable to determine for certain that an alternative approach was feasible in her case, I encouraged her, at the very least, to become more assertive about getting answers to her questions: If she wasn’t a candidate for laparoscopy, why not? I told her I’d do some further research about this and get back in touch with her. I looked this up on the internet and then sent her this e-mail:

I looked at some sites on laparoscopic hysterectomy. Here is one I thought was good:http://www.ohanlan.com/laparoscop.htm From what I can tell, it should be possible to remove even a large uterine mass via laparoscopy.Good luck getting an answer on this that makes sense to you. Let me know if I can help any further.

Elyse communicated directly with a nurse at the above site and it bolstered her belief that it may not be necessary to undergo a total abdominal hysterectomy. She communicated this to her doctors in Iowa who were still uncomfortable exploring alternative options. So, she sent me the following e-mail:

http://www.google.com/search?hl=en&q=fibroids+ultrasound&btnG=Google+Search&aq=0&oq=fibroids+ul

Charlie, have you heard of this — nuking the fibroid with ultrasound while using MRI to view and target the waves? Just learned of it today. Seems to me that U of I is wanting to just yank everything out even though there’s no proof that this growth is malignant. Sounds to my laywoman’s brain like at very worst there’s a 50-50 chance of malignancy, yet they do not want to do a biopsy for fear of rupturing something that might be ovarian and malignant, causing easy spread of malignant cells.

What I don’t understand is how anyone can determine if it’s malignant without a biopsy, but obviously someone knows how to do that, because links in the above results say the ultrasound procedure works well for non malignant fibroids, which means that somehow there’s a way to determine malignancy or no without too much fuss. U of I insists that there is no better imaging method than the CT scan I had, but at least some of the above links state that MRI is better. Huh?? Who is right? Is this a case of “we only know how to use a hammer, so everything we see must be a nail” or maybe “we’re financially invested in [name your imaging method of choice], so we’re going to use and promote that”? Thoughts, please?

Well, truthfully, I had not heard of this technique, so I did some additional research and found that the number of sites offering the procedure were limited, but sent these to her, with some additional links from the internet. In addition, this e-mail string reminded me that an increasing number of doctors and patients are opting for uterine artery embolization. I mentioned this, and she e-mailed me back that she was unable to find links for this procedure that I mentioned.

Here is my reply to her:

I should have used the “correct” term: uterine artery embolization.

This is another very reasonable alternative for you to consider, maybe even more realistic than the ultrasound approach.

After several more fax and phone exchanges between Elyse and the above physician in California, and phone exchanges with the physicians in Iowa, Elyse underwent an ultrasound examination that confirmed a large, single uterine fibroid about 6 or 7 cm in diameter. The Gynecologist/Oncologist in California felt that surgery was entirely optional at this point, noting that Elyse would likely experience shrinkage of the mass following menopause within a few years.

She is still in the process of finalizing her decision whether to proceed with a laparoscopic hysterectomy or take the “watch and wait” approach but is certain of one thing: she is NOT going to proceed with the scheduled total abdominal hysterectomy.

So, that is where we stand. But, what is the point? Well, the HUGE point is, Elyse is no longer content to blindly follow her doctor’s suggestions. Whereas they suggested she undergo a major surgical procedure, they didn’t even mention two significant new, less invasive procedures that might well be appropriate for her to consider, and did not give her clear information to consider the option of just watching and waiting.

The other point of the story is that a wealth of information is available on the web, but patients often need encouragement to seek it, and help interpreting it and applying it to their own situations. Peer support groups on line are one way to accomplish this and finding an interested, available physician to serve as an “e-patient advisor” is another way.

Either way, it is a good example of how patients are moving into the e-patient revolution and, through this process, the health care system is changing. In the meantime, join me in hoping Elyse soon finds the perfect solution for herself and has a great outcome.


So there you have it. Clearly, Elyse took matters into her own hands, even though she was prepared to do whatever her docs told her was necessary.

What do you see in this story? What happens in the awakening of an e-patient?

My thoughts (and a sequel) later this week. First, your turn: Discuss.

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Posted in: e-patient stories | how I became an e-patient | net-friendly docs | trends & principles

 

 

Comments

22 Responses to “An e-Patient is Born: Elyse Chapman’s story”

  1. ePatientDave says:

    New on e-patients.net: An e-Patient Is Born – Elyse Chapman’s story http://is.gd/uMYm

  2. This news item refers to a recent Deloitte study and is directly related to Elyse’s personal advocacy efforts:

    What do patients really want from you?
    http://www.ama-assn.org/amednews/2009/04/27/bil20427.htm

    link to study/related: http://tinyurl.com/conyjs

  3. Sandi, that’s a great new article about a fascinating story. I’ll look forward to comments from Pew Internet Project’s Susannah Fox, about how Deloitte’s numbers interplay with theirs. Thanks!

    (Everyone, this is great timing – the article is dated *today*.)

  4. An e-Patient is Born: Elyse Chapman’s story http://bit.ly/N7HzJ

  5. Amanda Beals says:

    RT @Berci: An e-Patient is Born: Elyse Chapman’s story http://bit.ly/N7HzJ

  6. Amanda Beals says:

    RT @Berci: An e-Patient is Born: Elyse Chapman’s story http://bit.ly/N7HzJ

  7. Elyse — welcome to the e-patient club, an exclusive group with very selective admission policies which you have passed with flying colors.

    As Dave said, it requires an awakening, a pivotal moment. That awakening doesn’t happen to all of us in just the same way, but it’s crystal clear when it has happened. It’s not easily defined, but “you knows it when you sees it.”

    I hope you’ll do what Dave has done, and what others of us have done, too. And that is: preach the sermon of e-patienthood to others. Step up to the plate to facilitate their acceptance into the e-patient club, too — as necessary.

    In a perfect world NONE of us would need to be empowered (because we would never have health challenges) or ALL of us would be born “e”! No club would need to exist. Alas, that is not how things are. Thankfully we have plenty of help in the form of the many e-leaning professionals and e-patients you’ll find here and elsewhere.

    There is no limit on the number of members we can accept. The more, the healthier! Congratulations on your success, and we hope to see you hanging around here more often.

  8. From the @NYTimesHealth Twitter account:

    Women Who Keep Ovaries Live Longer

    Well! Isn’t THAT a timely news tidbit for the issue of informed choice!

  9. @GoodHealthCoach e-patienthood often saves lives that otherwise would be lost. It certainly saved mine, too. http://bit.ly/1al6kF

  10. Bill says:

    Dave lets examine this case somewhat more carefully. Elyse Chapman went to her physician seeking treatment for a symptom that caused her discomfort and distress. Initially your post states that Elyse was scheduled for “a total hysterectomy via exploratory laparotomy”, however in the next paragraph Elyse is concerned about “why her doctors were so focused on performing a total hysterectomy and why she wouldn’t be a candidate for a laparoscopic approach.” So I am confused what did her doctors in Iowa want to do?

    The posting describes how Elyse through personal contacts, was made aware of alternative procedures and sought consultative advice from medical professionals. How does this differ from asking for a second opinion, with the exception that emails flew across cyberspace and information on the internet was consulted? Nowhere do I see evidence of Elyse making an informed decision without consultation with an MD or for that matter advocating an alternative treatment to her doctor based solely on her assessment of the literature. This is how I would define an e-patient.

    Let’s examine the options as I see them from this post. Elyse was diagnosed by her doctor has having a tumor, possibly malignant, on her ovary or uterus. There were concerns about potential problems with a conventional biopsy. If we ignore the initial description of the doctor’s recommendation, she was scheduled for a total hysterectomy. Clearly, if her doctors were able to determine if the tumor was malignant or not their recommended treatment options would likely have been different. The downside of a non-laparoscopic procedure appears to only have been a longer recovery time. Sometimes the length of recovery time can be an issue, especially if it delays further treatments. However if the choice is between an eight week recovery time and the potential of death from a malignant tumor, I think the choice is rather easy. The downside of a laparoscopic procedure was never stated but, may have been concern about removing all of the tumor if it were found to be malignant and possibly the fact that laparoscopic treatments were not in general use for this type of procedure at Elyse’s hospital. It is never wise to be the first patient that a surgeon performs a new procedure on; it is seldom wise to be the fiftieth.

    Ultimately a diagnostic procedure unknown to Elyse’s doctors and Dr Smith was discovered and Elyse’s doctors were convinced that it could be used to make a reliable diagnosis. Do we fault doctors for not knowing everything that is in the medical literature? Would we fault doctors for not wanting to risk the life of their patient to a diagnostic procedure, the MRI, whose efficacy they were not completely convinced of? I think it is commendable, and also rather risky, for Elyse’s doctors to risk her health on a non-standard procedure that was evaluated by someone they had never met. What happens to them if Elyse’s tumors are militant?

    Today Elyse’s choices are wait, live with your problems, and when you enter menopause they may go away or remove the tumors by laparoscopic surgery. If male doctors had suggests the first option to my wife I would have been insulted and felt that they were uncaring male chauvinistic SOBs. Your post never presents any arguments why Elyse’s doctors rejected the laparoscopic alternative in the absence of a determination that the tumors were not malignant.

    Reading between the lines it seems that your friend called you because she was concerned about her diagnosis and the prospective treatment. She learned from you about your laparoscopic surgery for the removal of a cancerous kidney, and somewhere the thought of a laparoscopic treatment for her tumors was born. As we all know kidneys are not the same as ovaries and the uterus. There may be very valid reasons why a laparoscopic procedure would not have been appropriate for Elyse in the absence of clear knowledge about the malignancy of her tumors. It is a disservice to everyone if this part of the story is not presented in your post.

    Lastly, let me close by saying that I have recently lost a dear friend to uterine cancer. Six months ago see was diagnosed with two tumors, one the size of an orange and one the size of a banana. As she told her friends last Christmas “who knew Carmine Miranda was living in my abdomen.” They were removed and she underwent the best treatments available in San Francisco. Unfortunately she died within six months. I sincerely hope that this is not the fate of your friend.

  11. TwitGle says:

    An e-Patient is Born: Elyse Chapman's story | e-Patients.net http://bit.ly/187Hzf

  12. Folks, Bill (previous comment) is an even LONGER time friend, all the way back to college. Great to see you here, Bill.

    This is a deep conversation, lots to chew on. I’ve got to get in the car and head out of the office. More later.

    There is MUCH to chew on in your comment.

  13. Bill,

    I’m very sorry to hear about your friend. If this is anyone I knew, please drop me a note. Very sorry.

    I think I get your point about the doctor’s perspective. I am no enemy of doctors, as you probably know if you read me here. I was saved by doctors and hospital staff brilliantly administering a treatment developed by doctors, which I never would have dreamed up.

    A key part of the e-patient white paper is what’s expressed in the slogan at the top of the blog: professionals can’t do it alone anymore. You pointed it out correctly: do we expect docs to be up on everything? No; as cited in the white paper, Donald Lindberg, head of the National Library of Medicine, said if he read two new journal articles a night, at the end of a year he’d be 400 years behind. Worse, docs don’t have a billing code for “reading up on stuff,” so they have to do it on their own time, and they’re under constant pressure to spend less time and money on each case.

    In contrast to that, when a patient like Elyse or me gets news like this, we’re HAPPY to search to the ends of the earth.

    As I think you read in my CaringBridge journal, I sometimes brought new thoughts to my oncologist. A fair amount of the time, it turned out I was wrong; other times I had valid points. But I was doing everything in my power to do anything I could. (And as I think you know, I never objected to the treatment that was recommended.)

    All I want is for patients to have the best possible information about all their options, and to be as wise as possible in assessing those options.

    Example: I know a guy in whose cancer was much smaller than mine, who had an open nephrectomy, requiring permanent removal of a rib and the long recovery time. He was never told he could go across the street and have it done laparoscopically. My opinion is that he ought to have known what his choices were.

    I also know kidney cancer patients who were never told that Interleukin exists as an option. My opinion is that they ought to know.

    They also ought to have up-to-date information on risks and odds; that information has changed substantially even since I had the treatment 24 months ago. No harried doc should be expected to be up to date on all diseases, unless s/he’s a sub-sub-specialist, as my own oncologist put it.

    In my view, it’s a partnership.

    In my experience the best way to know all your options is to find a community of expert patients with your condition. Failing that, google your butt off. Then, my opinion is that you bring your findings back to better-informed people, aka professionals or patient experts. Otoh, the white paper has numerous examples of people for whom there WAS no patient community, nor any treatment, but who cobbled together treatments or tissue databases that changed the outcome.

    — Re the “lapa” confusion: Elyse has a nasty cold … I can’t answer about the apparent conflict in the wording in Charlie’s post. I’ll see if he can clarify.

    Again, very sorry about your friend. I don’t think any of us here say that if somebody is more active it means they won’t die. I do think patients ought to be able to explore their options, as Elyse did.

    Another perspective: at the Health 2.0 conference last week one of the most quotable quotes was my physician saying “Doctors need to taught how to say ‘I don’t know. Let’s find out.’”

  14. […] treatment. And apparently that’s still the case, as ePatient Dave recently showed in his blog post on Elyse […]

  15. Deborah Bell says:

    ..”I looked at some sites on laparoscopic hysterectomy. Here is one I thought was good:
    http://www.ohanlan.com/laparoscop.htm“…

    Kate O’Hanlan is a well-known gynecologic oncologist, and provides a great comparison of the various issues in doing vaginal hysterectomies (above). I heard her speak several years ago on a different topic and was extremely impressed.

    The issue here seems to be how the doctors know it’s not malignant. Generally, malignancy (or not) for ovarian tumors isn’t certain without surgery.

    Another issue is finding a trained doctor to perform a laparoscopically-assisted total hysterectomy. I wouldn’t want to be anyone’s first patient.

    The reason Elyse got involved in this basically has to do (as I see it) with the difficulty a long recovery from surgery would have on her life. A vaginal hysterectomy would resolve that – the recovery is much shorter.

    But in all this, I don’t see a definitive determination of malignancy or not – since there has been no surgery. I am not as familiar with uterine cancer, but ovarian cancer is something to deal with ASAP. That doesn’t preclude getting second and third opinions, but it usually means not having endless time for decisions.

    Elyse, I don’t want to scare you. But I would definitely seek out a gyn onc who is experienced in a laparoscopically-assisted total hysterectomy if that’s what you decide to have done. They are rarely done in the ovarian cancer community – that only means that the doctors with experience in the procedure are few and far between.

    And… if it is malignant, and I certainly hope it isn’t, you will probably need treatment, which also will diminish your ability to work at your normal pace. What a mess!

    I am one of the listowners of the acor.org ovarian list which is the source of much information and the reason I’m an e-patient :-) However, I am not a medical professional.

  16. Susan Ghiaciuc says:

    I was terribly sorry to read about Elyse and her situation. No disrespect intended for you, e-patient Dave, but I take serious offense with your description of Elyse as “a strong woman (good Midwestern stock), she was willing to do whatever she needed to medically: she can handle it”.

    Good Midwestern stock? I am definitely Mid-Western (actually, a University of Iowa alumni), and as someone who has worked with farmers directly I understand “good stock” as a descriptor for cattle. So you can imagine how put off I was as a reader. Best wishes to Elyse.

  17. Hi Susan – thanks for writing.

    Elyse is doing very well medically. (She’s on a trip this week, offline, or I imagine she would pipe up.)

    I said that as a Midwesterner myself – I consider Minnesota my home and still keep in touch with high school friends there. I was just quoting a term we talked about back then. No offense intended.

  18. @Meryl333 Last April a friend in Iowa decided to stick up for herself similarly – her story http://is.gd/bbzJy

  19. I'm looking for someone who's RIGHT NOW going through the moment of e-patient awakening (a la http://is.gd/bbzJy). RT?

  20. Laura Good says:

    RT @ePatientDave: I'm looking for someone who's RIGHT NOW going through the moment of e-patient awakening (a la http://is.gd/bbzJy). RT?

  21. RT @ePatientDave: I'm looking for someone who's RIGHT NOW going through the moment of e-patient awakening (a la http://is.gd/bbzJy). RT?

  22. […] read Elyse’s story – and the comment stream. It’s fascinating to look back and compare people’s […]

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