Gina Kolata’s must-read article, “The Scan That Didn’t Scan,” in last week’s Science Times points out vast differences in the quality of MRIs as well as vast differences in the expertise of the radiologists who interpret them.
Patients need to understand this, because physicians sure as Hades aren’t going to tell you.
Kolata uses sports injuries as examples. With suspected cancers, the stakes are life and death.
One of the first physicians to almost get my teenage daughter killed was the well-intentioned local radiologist who assured us that the odd lump on her left forearm was “probably not” cancer, although he could not specify exactly what it was. Due to location of the tumor (near the ulnar nerve), the radiologist recommended that we NOT have the bump removed. “Don’t worry, mom….”
Based on the radiology report, the dermatologist likewise recommended that we NOT have the lump removed unless we had access to an expert surgeon (which we did not, or thought we did not), so he simply dropped the ball on the referral. He just quit.
My daughter finally insisted that it be removed because it was not behaving like a cyst — this despite the orthopedist at the county hospital having brushed aside her concerns, his near warp-speed exam preceded by a several hour wait in the waiting room. (There is nothing quite like a 30:1 wait:exam time ratio to convince you that you are indeed an idiot, wasting the doctor’s time, overreacting to a minor medical anomaly.)
Then came the dreaded “Whoops!” scenario so familiar to sarcoma patients — an excisional biopsy done without benefit of prior testing. This would be akin to a surgeon removing a lump from a woman’s breast without benefit of a needle biopsy. The tumor is cut open, with no margins. (See Fritz C. Eilber, MD, and Frederick R. Eilber, MD, “Surgical Management of Soft Tissue Tumors: Avoiding the Pitfalls.” American Society of Clinical Oncology 2005:940-942).
The lump was a malignant peripheral nerve sheath tumor (mpnst), a sarcoma or soft tissue cancer.
Fortunately, the orthopedic surgeon who removed the lump — after assuring me with a smile, “Don’t worry, mom. How long has this been here?” — was an expert (albeit at sports injuries, not orthopedic oncology) and a good guy. He did not disappear after the “Whoops!” Instead, he spoke with Dr. Sharon Weiss at Emory University Medical School, acknowledging that he had been unaware that sarcomas could sit for a decade or more, indolent (looking like cysts) before they took off. And the tumor, almost imperceptibly, had begun to take off. Instead, he called around the country to help us find the right medical specialists.
After weeks of agonizing debate, her team settled on a conservative re-excision, sparing the nerve, insuring quality of life, putting her life at higher risk.
Whither the MRI?
The initial MRI was the only baseline image which her oncology team had to grade the tumor before it had been cut open. Besides tissue analysis, grade of tumor is determined by size, depth and firmness of the mass. Grade determines treatment, meaning that my left handed child, an accomplished violinist, might never use her hand again should the next surgeon decide to cut.
A physician at a university medical center finally explained that the films were junk. Useless due to poor quality. A joke, almost.
Although the radiology departments at two widely respected children’s hospitals were good, the radiology department at UCSF was excellent. So excellent, their more comprehensive scans revealed cysts on her palm, meaning possible (but not probable) local metastasis.
Thus began a new nightmare. A needle biopsy risked permanent damage. The UCSF radiologists were indeed experts, but by then we were afraid to trust anyone (a common side effect of sarcomas). Nonetheless, we decided not to hunt that particular dog — AFTER ascertaining from an experienced ACOR list member (a physician) that UCSF indeed had an excellent radiology department.
There are several lessons to be learned.
First, as Kolata points out, there are vast differences in the quality of MRIs as well as vast differences in expertise of the radiologists who interpret them. The MRI is the key element in the referral and decision making process.
Second, there is no substitute for research and patient proactivity. None. Nor, given the fractured state of health care in the United States and the flailing economy, is there any substitute for e-medicine for cancer cases in terms of speed, research capability and candor.
Third, organizations like the American Cancer Society and the Lance Armstrong Fund need to take the lead in getting the word out about klutzy MRI’s. This is unconscionable.
As a further insight, the wife of my daughter’s high school biology tutor, head pharmacist at a local hospital, informed us that in decades past that my daughter’s case would have automatically been referred to a major university medical center. Now, given local oncology facilities, insurance companies force the patient to beat his or her way through the local medical scene, making referrals to genuine centers of expertise for ordinary people difficult if not near impossible.
The locals may be fine for diagnosis and treatment of the Big Four cancers, but they ain’t fine for pediatric cancers and/or rare cancers which present as suspicious lumps and bumps. For this, they can be fatal.
It would be different if physicians were to openly admit the limits of their expertise, but that is not how the American medical system works.
In 2007 I had 9 MRIs. Two were because the previous ones proved almost useless. Fortunately I had good doctors who recognized just how poor the MRIs were and reordered new ones. One facility never provided an MRI that the doctors considered above poor in quality.
All this took place as I had various doctors all telling me how serious my condition was and recommending drastic actions. “There’s a 20% chance of severe debilitation and a 10% chance of death from this surgery.” Followed by the comforting “But that’s never happened to any of my patients.”
The key was getting good imaging and good doctors. I had experience with the latter but last year I learned to not just accept being told to go get imaging and accept the location/provider. There are almost always multiple choices that insurance will cover. Do a little digging about the facility. Ask about the equipment. I’ve found that if you get a tech bragging about their equipment your odds of a good scan are drastically better than places where the techs just seem to be doing another job.
Once again, as with all others of treatment, you have to manage your own care. Don’t just accept what you’re told. Ask questions. Demand answers. It may be uncomfortable but the consequences are huge. Thursday I’m having another MRI (the beast in my neck stopped growing and causing problems so I still haven’t had surgery). This time I’m driving an 30-45 minutes instead of 5. It’s a hassle messing up my day but the end result will be an MRI I can trust vs one of questionable quality where the doctor is trying to decide if it’s worth the expense to get another.
Tracy
From reading your comments I see that one key to saving your own life is to have either GPs or oncologists whom you trust enough to ask about the quality of the films. Few of us have a personal enough relationship with the radiologist so the question could even be raised. (I did, however, raise such a question with a radiologist last week. The guy practically went into apoplectic shock.* I don’t think he’d ever encountered an “activated patient” before.)
* the depressed
state of cerebral function which follows cerebral haemorrhage :)
Congratulations with this entry, and I’m happy that your daughter did not suffer any serious consequences of this.
I very well remember my “whoops” moment on March 28, 2006. 3 surgeons had diagnosed a rapidly increasing lump (double chicken egg) as a haemorrhoid (although it was located under “normal” skin). During the removal surgery I heard the surgeon’s “whoops”. It turned out to be a very rare case of b-cell plasmablastair non-hodgkin lymphoma.
Thank you for sharing the details of a potentially life-threatening, and personal health care event.
The nature of this kind of experience leaves everyone shaking their head, and skeptical moving forward. Many consumers will remark, “but how could this happen.” I’ve been in your situation multiple times, with different family members, within some of the best medical institutions in this country. And similar events have occurred.
I learned that no matter how aclaimed an institution, or doctor, the provider is only as good as its weakest link. Each personal experience made me more certain that patients and their families must take the lead in managing their treatment and care. Remember, the only constant throughout the entire experience is YOU.
As consumers we have been educated how to buy a car, a computer, new appliances, find the right college for our money, etc., but very little exists to support our purchase of our health care providers and treatment. Not to be crass mind you, but we all enter the gates of the Health Care System, and assume that because most participants are the brightest and dedicated in their profession, high-tech medical diagnostics abound, certainly nothing will go wrong.
Well, your story substantiates a very real fact. The current Health Care Delivery System is riddled with care and medical information management “potholes,” and will be for years to come. The system in many instances is designed, as one e-Patient participant noted,”to treat medical events.”In order to help the many talented/dedicated professionals attack these Health Care Service Delivery problems – we need the voice of the patient to be included in building the solutions, and as patients we must find a way to make this occur. Patient-centered Care is a must.
You, and only you (your caregiver in some instances) has the most vested interest in your treatment outcomes, and therefore should be able to do everything possible to ensure the best treatment outcome and patient experiences.
Remember we are “buying” the expertise and services of a professional team, and we owe it to ourselves and our loved ones to:
1) Evaluate the quality of the services as best we can in advance (if this is possible);
2) Ask questions, and get answers at any time in the treatment cycle-the wonders of the Internet, and sites like e-patients are a source of great information and help. I’ve educated myself about an illness and diagnosis prior to a meeting with a physician, so I could ask meaningful questions. Generally, I’ve found that most medical professionals welcome the opportunity to raise the level of discussion. Those that don’t appreciate your involvement – well that speaks volumes doesn’t it?;
3) Be proactive if a professional response, or outcome doesn’t make sense – get help in advocating if necessary. Don’t be intimadated! Just because your not a medical professional, doesn’t mean your stupid, or your input/sights aren’t valuable;
4) Communicate with your insurance provider about any service experiences that are questionable. Although we don’t have a true “pay-for-performance” system yet, organized services are being enacted in this area. Service Provider A, providing a top-notch treatment experience, and predictable outcome should not be compensated in the same manner as Provider B, who performs the same service in a subpar manner. As a consumer, look for as much of this kind of information in advance about a provider. Institutions like the Cleveland Clinic make their measurement data available to consumers.
I wish all the best to you and your daughter, and kudos to your efforts and persistence.
Susan,
Thanks for the encouraging words. Even now, in retrospect, I still shake my head at the above “stream of events.” Writing the piece was very painful because I realized how much hinged on that initial MRI. Unreal. Plus I have a fierce disgust at being patronized by way of the “mom” comments. Re-reading the piece reminds me why.
Our best allies ended up being women, who could accept me as an educated peer without losing face. These gender dynamics + e-medicine bear further investigation.
Ironically, I find myself in a similar situation, with calcification showing up on a mammogram, and the physician who did the MRI suggesting that I return in six months: the identical advice given to Sheryl Crow (who overrode the physician) and warned specifically against by Jane Brody in yesterday’s New York Times article on breast health.
I faxed the article to the various actors in this drama, but it only makes the local radiologists angrier, because they, like most physicians I know, see themselves as too busy saving lives to read.
I used to think these roadblocks were due to the fact that we didn’t have great insurance, but even the wealthier folks I know spend an inordinate amount of time on similar issues. In fact, the more established the physician, the more unthinkable it is that a patient would question his or her judgment.
Christine,
Paying for health care is certainly an issue, as is the type of insurance. Yet, these are probably going to be the most “fixable problems,” in the years to come.
What most folks don’t realize until they are entrenched in the system is that the most onerous set of problems today are entrenched in the broken Health Care Service Delivery System, which is not patient-centered. When you’re in it, as you have been, you know.
As you move forward, don’t get discouraged, and don’t be afraid to question any and everything. Remember, there are many folks to support you (from experience too), and lots of great information available.
Be of good courage!
Christine, I posted about this on my own blog tonight, and I’m left with a big question: what do I do, what do our readers do, to find out which places are good at it and which to avoid?
Is there, or should there be, a national registry of which places have which type of scanner, their power, their age, etc?
Another thing, perhaps for our MD readers: I’ve heard doctors say that I should only get a scan at a certain place because if I got one elsewhere, another hospital’s radiologists won’t read it. Is that because of genuine variations between machines, or what? (And if it’s variations between machines, it sure underscores the title of your post.)
Christine & Dave,
When I was doing research on medical diagnostic testing and equipment this summer related to a questionable diagnosis for my daughter, I searched for such information.
This information may or may not help, but I’m happy to share this with you.
1) This National Imaging Association posts this information on their Web site for patients seeking radiology services:
http://www.radmd.com/soln_patients/patients.htm
There are helpful tips and questions for a patient or caregiver to ask the radiology firm about the facilities services, staff, equipment, and relationship to the referring physician.
2) Information to check when you’re considering an Independent Radiology Provider, i.e., not affiliated with a specific provider/set or providers. These were listed as minimum musts:
a) Is there a Board-certified Radiologist onsite at all times? If not, don’t use this facility.
b) Does the facility offer four (4) other image-testing procedures? They consider this a minimum requirement to demonstrate overall expertise and experience.
c) Is the facility open for business a minimum of 40 hours/week. Anything less infers not enough working experience, day-to-day by the staff.
It’s not much, however if you have additional information, please share it.
Susan
My 5 month old has just been diagnosed with MPNST. The tumor on his shoulder was misdiagnosed as a broken collarbone due to a bad x-ray! The tumor was removed last week, biopsied, and our doctors (in B’ham, AL) believe it to be MPNST. We are, actually, waiting for Dr. Sharon Weiss to verify the diagnosis so we can proceed. Thanks for your article as we are devastated and looking for anything hopeful about this rare cancer. I’m so glad your daughter is okay!
Stacy,
I am so sorry about your baby but glad they are sending the slides to Dr. Weiss, who is excellent. BEFORE you make any major treatment decisions, I HIGHLY RECOMMEND that you find the very best pediatric facility available for pediatric sarcomas. First, contact Dr. Brigitte Wideman at the NCI-POB (Pediatric Oncology Branch). They could possibly treat there, or Dr. W. might be able to recommend the best first-rate facility available to you. Second, you can contact St. Jude Children’s Research Hospital if you aren’t already there. Dr. Sheri Spunt is their sarcoma specialist, I believe. Third, join the ACOR (Assn of Online Cancer Resources) pediatric oncology list. The folks there have a wealth of information, support and resources.
mpnsts are very rare, and not typical in children
THE FIRST STEPS ARE THE MOST IMPORTANT, so act now to explore resources. You can contact me at ChrisGray1@aol.com. The top cancer hospitals in the country with the top sarcoma teams are MD Andersen in Houston and Memorial Sloan Kettering in NY. The top pediatric facility (and there is some debate about whether a children’s facility with a high rate of traffic or a major cancer hospital with a sarcoma ‘team of expertise’ is the best) is CHOP (Children’s Hospital of PA).
Get your team together. Go to the Liddy Shriver Memorial site and start your notebook of test results and reports so your baby has the best, most informed parent-advocates possible.
Weiss is an excellent first step.
Hang in there. The ACOR lists provide invaluable support, particularly during these first awful weeks of disbelief. The most important thing is to START with the very best health care team in reach. So you might want to assign a family bulldog to the insurance company. Also, RIGHT NOW, request a Certified Case Manager to help guide you through the referral system. It is their job to advocate for your baby, not for the insurance company. INSIST on direct, not third hand, contact. If the company stalls, contact your nearest politician immediately, with a copy of the correspondence — hopefully via email — to the company. You want what you want NOW. No questions asked. Unfortunately, a baby with an mpnst makes for great PR pressure. Use it if you reach a roadblock.
Once you are in a safety zone with a first-class team, you can breathe and attend to other matters without having to constantly second guess the physicians. That first “whoops!” surgery will sure do ya on trusting the medical establishment.
Prayers for you as well.