by Mary J. Shomon
Barry M. Shmookler, M.D., is a surgical pathologist and founder of FindCancerExperts.com, a Web-based service that matches patients with expert pathologists who will review and evaluate biopsy specimens (tissue, cells or fluids) taken for evaluation of possible cancer. Dr. Shmookler was a presenter at the September, 2000 Thyroid Cancer Survivors' Association (ThyCa) conference, in Washington, D.C. I had an opportunity to talk with Dr. Shmookler about evaluating potential thyroid cancer, and the role of second opinions.
Mary Shomon: Thank you, Dr. Shmookler, for taking the time to speak with us today. First, can you tell us a bit about what motivated you to create FindCancerExperts.com?
Barry M. Shmookler, M.D.: As a practicing surgical pathologist for 18 years in a major cancer hospital, I realized that disagreements occasionally occur regarding the cytologic or tissue diagnosis of cancer. It also became clear that most patients are not aware that such errors can be made at this first crucial stage of cancer management. Therefore, I felt that development of such a Web site would fulfill two important objectives:
- Educate patients on the role of pathology in cancer diagnosis and on how to
obtain expert second opinions to confirm or revise cancer diagnoses.
- Provide access via the Web site to individual experts who are available to
serve as consultants to patients and family members.
MS: Are there many errors in reading and interpreting samples? What do you think the reasons are behind that?
BMS: Recent studies from major medical centers disclose an average error rate of 1.4% to 4% (references are available on the Web site). Fortunately, this is a low number. Nonetheless, for the individual patient with an incorrect diagnosis, this can lead to serious medical complications and less than optimal outcomes. The accuracy of a pathology diagnosis depends on the training, experience and judgment of the individual pathologist. As with all human endeavors, this varies from person to person. Also, many highly competent pathologists do not have a lot of expertise in the more uncommon types of cancer. For example, thyroid cancer accounts for only 1% of all malignancies. The diagnosis of uncommon cancers is just one situation in which a second opinion for a pathology diagnosis may be prudent.
MS: With regard to thyroid cancer, most patients start with a nodule or lump, and diagnosis begins with a fine needle aspiration (FNA). In your experience, if a patient gets a reading that their nodule or lump is benign, should they get a second opinion? Are there any warning signs or factors that would make it even
more important for a patient to consider getting a second opinion by a pathologist to review their samples from the FNA?
BMS: The experience of the physicians who perform and evaluate fine needle aspiration (FNA) is of the highest importance. Your treating doctor should be able to provide this information to you. The diagnosis on a FNA must be correlated with the clinical findings, scan studies and other tests. In other words, if your clinician was concerned about thyroid cancer, a "benign" diagnosis on FNA should be reviewed by an expert in thyroid FNA.
MS: What about when there's a finding of cancer? Should a patient also get a second opinion at that point? Frequently, there's a push to move forward, a rush to schedule surgery. Should a patient take the time for a second pathology evaluation? Is there a chance that they are being told incorrectly that they have cancer when they don't, and that surgery would be unnecessary?
BMS: Again, experience of the pathologist with thyroid FNA is crucial. If a pathologist does less than 100 thyroid FNAs a year (you can ask), a patient may want to request referral to a medical center with an active thyroid cancer program. If the FNA has been performed, you can then request a second opinion. In most situations, the few days delay will not be harmful. Of course, discuss this with your doctor.
MS: If I were a thyroid patient who had a recent diagnostic procedure (FNA, Surgery), and for whatever reason I have decided that I would like a second opinion regarding my sample and diagnosis, can you walk me through how your service could be of help to me?
BMS: FindCancerExperts.com has established a network of over 50 nationally recognized pathologists with expertise in essentially all areas of cancer diagnosis. For example, if a patient wanted a second opinion evaluation for a thyroid biopsy specimen, we would provide him or her with the names and contact information of up to three experts in thyroid pathology. We also give the patient detailed instructions on how to proceed with requesting and expediting a second opinion, as well as examples of forms that may be necessary. Remember that patients do not have to travel for a second opinion in pathology- only microscopic glass slides are sent by express mail service. It's that easy.
MS: In your opinion, what makes a great pathologist? If you were going to have your test results reviewed for you or a member of your family, what sorts of qualities do you consider required for a pathologist you would trust or recommend? And what do the pathologists your service recommends
have to offer versus a local pathologist that might be recommended by a patient's doctor?
BMS: Certainly most pathologists maintain a broad competence in many areas of their field. However, a very select group of pathologists has achieved a level of expertise that qualifies them as nationally recognized consultants. This reputation is achieved as a result of training, research, publication and teaching activities. Such individuals are distinguished by their publication of original articles and chapters, affiliation with a university or major cancer center, appointment to editorial boards of medical journals and recognition among peers as valued consultants for difficult cases. ALL the pathologists in our network meet these qualifications. On the Web site, we provide guidelines for patients and family members on how to evaluate any physician for true expertise in any specialty.
MS: Some patients might be intimidated to ask for a second opinion, or afraid that they will anger or alienate their doctor. What are your thoughts for those patients? If a patient asks for a second opinion, and his or her doctor does seem to be resistant, or even angry, how do you think
patients should handle that situation?
BMS: It is important to begin my response with this fact: A patient has the right to request a second opinion from the physician of his or her selection. I believe most treating doctors will be supportive of their patient's desire to confirm a diagnosis or to assure optimal treatment. On occasion, frank discussion and insistence may be necessary. Patients must not be intimidated or left with a sense of guilt or betrayal to the original doctor. A patient's well being, and possibly life, may be at stake.
MS: Do you have anything else to share with thyroid patients that you feel is important for them to know?
BMS: Many cases of thyroid cancer can be successfully treated today, thanks to sophisticated methods leading to early detection and diagnosis. However, success often depends on receiving the best available care from the outset. Since thyroid cancer is not common, it is recommended, if at all possible, to undergo treatment at a center with an experienced multidisciplinary team. Team members include pathologists, endocrinologists, surgeons, medical oncologists and radiation therapists.
I would like to thank Ms. Shomon and About for permitting me to discuss this important aspect of thyroid cancer diagnosis. For visitors who have questions about pathology, our Web site has a feature called "Ask a Pathologist."
This article appeared in
USA TODAY, Monday, October 16, 2000, page 9D
Web Site Helps Cancer Patients Get a Second Opinion
By Steve Sternberg
USA TODAY
Wondering whether you really have cancer?
A new Web site - www.findcancerexperts.com - is designed to help those who have been diagnosed with cancer obtain a second opinion. It can put them in touch with a nationwide network of 50 leading cancer diagnosticians.
Whether the diagnosis is correct is perhaps the most important question confronting anyone whose doctor has delivered the terrifying news, says the Web site's founder, Barry Shmookler, a pathologist in Washington, D.C.
It is the question, he notes, from which every other crucial decision flows - whether to plan for a premature death, whether to submit to costly and painful treatment, and how aggressive that treatment should be. "People die of the complications of cancer therapy," Shmookler says. "It's not common, but it sure happens. Before you get started, you want to be sure the diagnosis is correct."
The service isn't free. Patients pay $80 by credit card. Shmookler says the fee goes towards maintaining his secure Web site. Within 24 hours, the site will supply the names of three top pathologists, plus detailed instructions on how to ship biopsy slides.
The pathologists will bill patients directly; fees typically range from $150 to $300 and ordinarily are reimbursed by health plans and insurers eager to avoid the much more expensive medical bills that flow from cancer therapy.
The reason: Doctors sometimes make mistakes.
A study in December in the journal Cancer found an error rate of 1.4% at the renowned Johns Hopkins Medical Center in Baltimore, which translated to one misdiagnosis a week at Johns Hopkins and at least 30,000 misdiagnoses a year at hospitals nationwide.
Shmookler, who spent 18 years as director of surgical pathology at Washington Hospital Center and several previous years at the Armed Forces Institute of Pathology, knows as well as anyone how challenging cancer diagnoses can be. He says he used strict criteria to select pathologists for the site. All are widely published in major medical journals, serve on those journals' editorial boards - five are editors in chief - and work at top universities and prestigious cancer institutes. "They're highly respected by their peers," he says.
One of them, Jonathan Epstein, a professor of pathology at Johns Hopkins, published the report in December's Cancer.
For his study, Epstein reviewed tissue samples from more than 6,000 patients. He found that 86 diagnoses were incorrect and would have led to unneeded or incorrect treatment.
Twenty patients had been told their tumors were malignant when they were benign. Five tumors that were ruled benign were actually malignant, and six tumors were misclassified entirely.
"Patients think you just pop something into a machine and out pops a diagnosis," Epstein says. "It's not like that. It isn't black-and-white. It's very subjective."
Some growths, particularly those in the ovaries, cervix, skin, prostate and lymphatic system, are tough to diagnose. And sometimes pathologists simply make mistakes. "In general, we're good at what we do, but we're not perfect," Epstein says. "I think there's a significant need for this."
Shmookler says he knows of no other Web site that offers this service, though an estimated 15,000 to 20,000 sites provide cancer information. The new site gets no support from drug companies, hospitals, insurers or anyone else, thus the fee for its use, Shmookler says. Pathologists do not pay to be listed, nor does the site demand a slice of the pathologists' fee. And all information is confidential.
"We encourage people to get second opinions," says Joann Schellenbach, a spokeswomen for the American Cancer Society. "Where do they get one? Sometimes the search is so daunting, they don't bother."
Schellenbach says her organization usually refers people to a local medical society for help. "If this becomes a reliable service," she says, "it would be a good tool to have."
New Website Offers Easy Access to Expert
Second Opinions in Cancer Diagnosis
ROCKVILLE, MD - October 18, 2000 (INB)
-- Newly-diagnosed cancer patients now have access to a secure
website that will enable them to obtain a second opinion quickly
and easily from nationally recognized pathologists. FindCancerExperts.com
http://www.findcancerexperts.com/
offers educational material and an interactive questionnaire
to help patients decide whether they should obtain a second opinion.
Should they elect to seek a second opinion, patients receive
- within 24 hours, by email or fax - the names and contact information
for appropriate expert pathologists to whom their tissue slides
can be mailed.
A recent scientific study of consultation
cases submitted to Johns Hopkins Hospital reported that error
rates in the diagnosis of some types of cancer could be as high
as 9.5 percent, with an average error rate of 1.4 percent. Patients
make critical decisions about major cancer treatment based upon
the pathologist's examination (biopsy) of their tissue samples.
Second opinions, which confirm or revise the original diagnosis,
are considered to be highly advisable to ensure the most effective
treatment.
FindCancerExperts.com, which was developed
by a prominent surgical pathologist, is financially independent
and receives no funding from the pharmaceutical or insurance
industries, medical-related companies, hospitals, or pathology
departments. All patient information is treated according to
the highest standards of privacy and confidentiality.
The site is supported by a fee of $80 from
patients. This fee provides patients with the names of up to
three pathology consultants along with detailed instructions
on how to get their slides to the pathologist they choose. The
pathologist will then bill the patient directly for the second
opinion. Such fees are normally between $150 and $300, and many
health insurance companies will reimburse patients for this expense.
Pathologists are selected to participate
as consultants to FindCancerExperts.com based upon high levels
of excellence, academic qualifications, and stature within the
field. They do not pay a fee to be included on the site, and
FindCancerExperts.com does not share in their charges for the
second opinion.
The website offers a significant educational
component dealing with topics that include the pivotal role of
pathology in cancer diagnosis and the reality of errors in this
critical diagnostic area. The patient or family member completes
an interactive questionnaire that focuses on types of cancer
and the particular clinical situations that are prone to more
diagnostic errors. The patient then receives a detailed, customized
response regarding the advisability of a second opinion.
Should a patient decide to seek a second
opinion, FindCancerExperts.com determines the primary site of
the suspected cancer and then provides the names of nationally-recognized
pathologists with expertise in the appropriate cancer type, together
with instructions on how to proceed.
The founder of FindCancerExperts.com is
Barry M. Shmookler, M.D., a renowned Washington, D.C.-based surgical
pathologist with more than 20 years of experience in the diagnosis
of cancer. A board-certified pathologist and dermatopathologist,
Dr. Shmookler has published more than 60 scientific articles
and chapters. FindCancerExperts.com has a Medical Advisory Board
of distinguished physicians in cancer diagnosis and treatment.
For more information about this press release, see www.newsbureau.com
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