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.

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.

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.

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.’”

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.

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.

Women Who Keep Ovaries Live Longer

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

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.

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