Out of the closet: Second opinions on Radiology tests

Dr. Greg Goldstein's story:

One of my patients, a relatively young woman I'll call Lauren, had had pain in her calf, with swelling, so she went to the Emergency Room to get an ultrasound.  They told her they saw a clot in the scan, so she'd need a few days of hospitalization, to be on blood thinners ["anti-coagulants"].  That treatment isn't benign, as there's a risk of bleeding as a side effect.  She called me and asked me to look at the ultrasound.  I looked, and didn't see a clot, so I suggested she have another ultrasound to confirm it.  She went to a vascular surgeon, who repeated the ultrasound, and also found nothing there.  She could've been put on Warfarin for a period of time, maybe indefinitely, so we prevented that.  That was good for her, and was also good from a public health perspective, as the money for the unneeded anti-coagulant drug was saved.

As my own Radiology practice grew, I learned about the importance of communication between the primary care doctor and the radiologist, and providing a high level of service.  I thought, Why shouldn't radiologists talk to patients?  Why be only behind the scenes, when we're in a unique position seeing doctors and patients from all specialties?  We're coming out of the closet.  That's important because patients are getting very frustrated, saying, "My doctor didn't have time to go over the film with me, and didn't explain things clearly enough to me."  

Coming up with a medical diagnosis is like putting a complicated puzzle together.  The radiology exams are a critical piece of that puzzle - its "centerpiece."  The radiologist's unique perspective puts them in the valuable position of knowing about each specialty and can therefore help patients navigate the health care "web'."

See another story of a falsely positive scan, and see Dr. Goldstein's MetisMD website.

Thanks to Dr. Goldstein for the interview.

An Actos Experience: He wants his pound of flesh back

Terrence Allen is a midde-aged warehouse worker in Attica, New York, who took Actos for his diabetes.   He developed bladder cancer after taking Actos for five years.  “If somebody had told me I could get cancer from Actos, I never would have taken it,” he told Bloomberg News. “There were other products out there that could have helped treat my diabetes without putting me through all of this.”

He said in December that he has had two surgeries to remove cancerous tissue from his bladder and may be facing another after the Christmas holiday.

“To some degree, I would like my pound of flesh from the company,” he said.

Doctors often prescribe Actos to type 2 diabetes patients who need to manage their blood sugar. For that distinct task, Actos does what it is supposed to do.  But for long-term users, the drug can cause extreme and serious side effects to develop — including the potential development of bladder cancer and heart attack.

More than 10 million people have taken Actos for help with their diabetes, but there is no such thing as a typical user of Actos. That's because drugs affect people in different ways, and few people have the same medical experience.

For some Actos users, the early symptoms of bladder cancer may go unnoticed. One side effect of Actos that can indicate a more serious problem is an increased need to urinate. But that symptom, as we know, also comes just from living. It comes along with aging.  

Many times, Actos patients do not associate the taking of their diabetes drug with having to go to the bathroom more often.  They WILL take notice, though, if/when they experience pain during urination or see blood in their urine. That's when most people know that it's time to call the doctor and find out what's really going on.  (And the sooner the better. Once bladder cancer has progressed to stage 3, there is only a 50% chance of recovery.)  Once patients experience one of these symptoms, they should make an appointment with their primary care physician — often the doctor that originally prescribed the medication — for a complete medical history.  From there, the doctor can give a referral to see a urologist for tests.    

The most common theme among people who have serious Actos side effects is surprise. How, they ask, is a drug that is supposed to help me live with diabetes giving me cancer?  Shock and anger are common emotions when people learn that their cancer could have been caused by a medication that their trusted physician prescribed to them — often years earlier.

Some patients begin taking Actos, hear about its serious risks, quickly contact their physician to change medication and save themselves from future problems.  Many patients, however, only hear about the risks of Actos years later, after they have been diagnosed with bladder cancer.

About 10,000 patients are expected to sue Actos' manufacturer.   

Read a bladder cancer survivor's story, and see the extensive DrugWatch website.  

This was written by Alanna Ritchie, a writer for Drugwatch.com. An English major, she is an accomplished technical and creative writer. Thanks to Alanna and John LaGrace for this story.  Some quotations were reported by TheSandersFirm.com and Bloomberg News.

YourCity.MD: A good way to give back

Joe Benza’s story: 

I’m an entrepreneur, with several successful businesses over the years.  My book called "Preventing Aids" published in 1985 by JALSCO, Inc.  is in 40 countries.  I also bought and sold Internet domain names as a rewarding hobby.  I come from a medical family:  I have a brother who’s a surgeon, and we have dentists, dental hygienists and a urologist in the family as well. 

My father had Parkinson’s, and his hand would shake a little.  He was a proud man, so he wanted medication to stop that from happening as he was very self-conscious.  He ended up getting leukemia, which was one of the rare side effects of taking his partiular drug.  My whole family missed it; we didn’t look at the drugs he was taking to see if the risk outweighed the reward; none of us looked.  The drug was somewhat controversial, and my Dad told me two of his doctors argued about the use of the drug.  One of the doctors stated the other doctor was getting a kickback or had a financial interest of some kind in prescribing the drug! 

Experiencing side effects, he was misdiagnosed by his doctors for four months, and then he passed away.  We were really angry but took on most all of the blame ourselves...at least, I know I did.

About a year and a half later, a business opportunity developed.  I’d realized that the name www.YourCity.MD was available as a Web domain name with the "Local" city names as well.  The Gannett company encouraged me to build the websites to help people like my Dad and my family.  They were prepared to collaborate with me on making YourCity.MD into a business. They ultimately bowed out, but I kept with it.  In light of what had happened to my father, it seemed a good way to give back to everyone else so they can avoid our guilt by using our free resources to make the best decisions for their own families.  

Today, we’re helping people in 100% of the USA to find good local doctors and the best healthcare information available.  We are the only "local" platform on the Internet in any industry with a national footprint. 

Read another entrepreneur’s entrepreneurial patient safety story.  Thanks to Joe for the interview, and to Joelle Caputa of CPR Communications for connecting us. 

Twittering an operation might seem frivolous: Detection of side effects

Part 1 of Terri’s story about her research into the treatment options she had for fibroid tumors appeared here yesterday. Here's Part 2:

During the surgery and recovery, Terri's husband used Twitter, the short-message communication service, to keep friends and family apprised of her condition. Twittering an operation might seem frivolous, but when Terri's teeth began chattering after the procedure, a friend following the updates suggested it could be a potentially hazardous side effect, tardive dyskinesia, that can occur with one of the anti-nausea drugs Terri was taking. Her husband, who had been researching that very point when the message from the friend came in, was able to get the medication changed.

Advice: Get help systematically from your network of friends when you're seriously ill.

Read a story about a friend who was helpful in a very different way.

Thanks to John Schwartz for the source article in the NY Times issue of Sept. 30, 2008.