Archive for Patient Advocacy

Are you a cyberchondriac?

web bombIt’s a new word to me, but today I learned it’s been around since 1999 (way back then!)

Recognizing the web as fertile ground for those who fantasize they are suffering from some dreadful malady, “cyberchondria” was coined as the internet version of hypochondria, of course.

As the moderator on the Research Help Board at (MisdiagnosisMOD) and the Medical Research on the Internet expert at, I usually hear from people who ask really good questions about a diagnosis or treatment option. Sometimes, too, I hear from folks who can’t get a diagnosis — their doctors are flummoxed. I do my best to help them learn more because having symptoms with no clear diagnosis is a horrible limbo to be in.

But sometimes I am contacted by people who ask questions such as, “I have a pain behind my left ear. Do I have brain cancer?” This comes a week or two after a previous question such as, “I can’t find my car keys. Do I have Alzheimer’s Disease?”

Now — I do appreciate that people are tuned in to their bodies. Always good.

HOWEVER — using the internet to make the leap from a small pain to brain cancer, or forgotten car keys to Alzheimer’s disease is simply cyberchondrism at its best. Maybe someone DOES have those diseases, but if so, then they likely have other symptoms, too. Their bigger pain will come from the fences they tripped over while jumping to such dire conclusions.

Cyberchondria is a word for our times. I hope you won’t get caught in its (ahem…) web! A sharp patient will avoid it at all costs.

Posted in: Patient Advocacy

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Ovarian Cancer – an Invisible Disease

She’s elderly. And for more than six months, she has complained with what seemed to be gastro-intestinal symptoms. Bloat, pain, fullness, lack of appetite, swelling and more. Tests on her gastro system including CT scans, ultrasound and an MRI were run and – nothing. Some of her current drugs, including Zoloft, were cut back to relieve the symptoms. Still nothing. Finally the doctor told her he couldn’t find anything – it must be her age.

Three weeks ago, she began running a fever, the bloating increased, she became listless, and thinking she had the flu, she was moved from assisted living to the hospital. In treating her for the flu, one very sharp nurse practitioner began to think the flu might not be the problem.

Sure enough — a tentative diagnosis of ovarian cancer, with a possibility of peritoneal cancer came forth and surgery a few days later revealed that her body was riddled with tumors. Blockages and fluid were everywhere. The surgeon removed as many as he could, and she “enjoyed” her first chemo treatment a week later. The prognosis, considering her age, is still tentative. She’ll be moved to a nursing home in a few days.

But the question remains — why didn’t any of the doctors suspect ovarian cancer? In reading about it after we got the diagnosis, I find that her symptoms were very typical! Ovarian cancer is very hard to detect…. but perhaps part of that difficulty is that doctors don’t think to look for it?

Her life may have been saved by the nurse practitioner — so my thanks and gratitude go out to her. But I will forever wonder if the prognosis wouldn’t have been better had the doctor been on his toes.

If you are female, and you have gastro-problem type symtoms that you can’t get answers for — please ask your doctor to check you for ovarian cancer!

Posted in: Healthcare Quality, Medical Errors / Mistakes / Misdiagnosis, Patient Advocacy

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In Search of Patient Advocates

In my past life, I was a marketing web developer. As such I learned how to analyze search engines and statistics to see what terms people are using to find my websites.

Review of my two main websites tells me that many of you are looking for information about patient advocates or patient advocacy. I don’t have a lot of that information online — but am ready to put some on my sites — sooooo — can you help me?

If you are a patient advocate — or — if you are in search of a patient advocate — or — if you want information about choosing a patient advocate — please send me an email! I will add information to my websites according to feedback.

Thanks! I look forward to hearing from you.

Posted in: Healthcare Quality, Patient Advocacy

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Doctors and Ambiguity

One of the great frustrations of my mother-in-law’s trial in the hospital is dealing with her surgeon, AKA “the artful dodger.”

In this case, my husband wants to get his arms around what happens after my M-in-L has her chemo treatments. How long will she be in the hospital? What are the options for nursing home care? Dr. B (as I’ll refer to him) won’t give a straight answer. He sidesteps, and even contradicts himself. One minute he says she’ll need to remain in the hospital and the next minute he talks about the social worker making arrangements.

This is after we have already ridden the rollercoaster of her possible MRSA infection (see more at — search for MRSA). Was it MRSA? or no? Dr. B says NO — but mostly we can see that he’s simply trying to cover his own tail. The nurses say yes — and insist she be put in isolation.

I think a lot of doctors learn to be ambiguous. They learn that patients are dazzled by their big words and concepts, and patients are afraid to keep asking questions. Certainly Dr. B was intimidated when I wanted to record our conversations. I won’t let him be ambiguous. I even asked my husband to stand between Dr. B and the doorway so he couldn’t leave until we got clear answers.

Sharp patients won’t let their doctors be ambiguous! Insist on clarity!

Posted in: Doctor Communication, Healthcare Quality, Patient Advocacy

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