Online cancer resources invaluable for empowering parents of sick children

By Christine Gray

Five years ago, when many pediatric hospitals were unaware of or unwilling to acknowledge the capacities of online medical support groups, my thirteen-year-old daughter was diagnosed with a subset of a rare cancer (sarcoma or soft tissue cancer).

It was clear from the outset that California lacked the expertise for correct diagnosis, to say nothing of the specialist teams recommended for best practices. Misdiagnosis and errors in treatment are the rule rather than the exception for sarcomas. Survival rates remain at about 50%. The AYA (adolescent and young adult) population has the highest mortality rate from cancer, in part due to sarcomas, which comprise up to 20% of pediatric cancers.

Guided by a sophisticated ACOR (Assn. of Online Cancer Resources) list whose members were at ease with PubMed, the NCI sites and more, we blasted our way from one bumbling pediatric institution to another. Our physician teams of self proclaimed experts practically went into cardiac arrest.

Omission after omission was revealed: failure to inform us of the margins on a cancer surgery and the significance thereof; side effects and late effects of radiation treatment; to say nothing of lost pathology reports, lost pathology samples, lost films from nuclear medicine and ON and ON and ON. This while the docs insisted on referring to me as "the mom," dragging an already traumatized child into hair-raising appointments and dumbed down meetings, fogging up information, discouraging outside expertise.

These pediatric oncology teams, whose institutions are highly ranked in the Best Hospitals edition of US News & World Report, were appalled that a patient would research their credentials or publications, dismissive of the suggestion that they might want to list their credentials on a website. They were shocked that patients would request copies of test results and medical reports -- the basic tenets of informed patient practice, to say nothing of Patient's Rights. Their institutional practices made a mockery of informed consent.

The question is raised: Who is sick?

The New York Times Health Section last week ran a great series of articles on patient care and online resources. What they did not address, however, was the capacity of e-medicine to expose medical error, rectify outdated practices -- to save lives, even, and compel accountability in a health care system which is otherwise acknowledged to be broken.

Fortunately, my daughter's story has a good ending. She is fine, in her second year of college. The ultimate omission: her cancer is resistant to chemotherapy and radiation therapy. The only gold standard cure for sarcomas is complete surgical excision, which is why her pediatric team refused to speak of anything but local control.

The surgeon was skillful.  She is lucky.

After the re-excision surgery, the NCI-POB (Ped. Oncology Branch) convened a Tumor Board on her behalf. They continue to follow her progress and will provide back-up, if necessary. Fortunately, it is not necessary. She is currently followed by the excellent Pediatric Specialties team at UCSF, which coincidentally is Internet-adept. Test results are sent immediately via email; there is no cruel added-on wait period on scan days. Patients are offered copies of scans on disc as they leave Radiology.

Both the UCSF and the NCI-POB teams regard ACOR and other sophisticated e-medicine communities as a boon, not as a threat.

In retrospect, the medical judgment of my daughter's initial physician teams was good, but communication was a mess, particularly interdepartmental communication. In some respects, the latter worked for us in that was often how we discovered basic information as well as error.

BOTTOM LINE: Their teams fell apart when faced with a rare cancer. True, they were unnerved by the Internet scrutiny, but ACOR and other sites were our only means of clarifying information, identifying "niche" experts and commanding accountability. As with politicians, the cover-up became worse than the original error.

The best of my daughter's docs learned from the encounter. Two of her LA physicians attended the next CTOS (Connective Tissue Oncology Society) meeting and entered into a dialogue with adult sarcoma specialists. Her surgeon eventually left to head a department at another hospital; his credentials and those of his sarcoma team personnel ARE listed on their website.

Two oncologists were put under review. One social worker left -- out of disgust, one assumes. At least one lower level employee was reprimanded if not fired. (The "computer" dropped the contrast portion of an MRI. No one discovered the error until I asked for the final report.)

Much has changed since 2003. ACOR and Sarcoma Alliance members launched an awareness campaign in the Los Angeles Basin area, the only major population center in the United States NOT to have a team of sarcoma specialists. UCLA and Cedars Sinai have moved to rectify this situation. I/we finally moved from logic to market competition/Internet awareness as a means of compelling social change.

Sarcoma docs all over the country are posting their credentials on websites. (This presents other challenges, but it is a starting place.)

My daughter's case became part of the movement to push the survival gap in the AYA (adolescent & young adult) population to the forefront of cancer awareness (see Amy Dockser Marcus, Wall Street Journal, July 5, 2005). The Sarcoma Alliance, which formerly served only adults, began to address pediatric and AYA issues, including referrals. Her case helped force at least some adult and pediatric cancer specialists into communication, which is an acknowledged problem in the field.

The older docs, in my experience, did not change. I have great confidence in the younger generation, however, particularly the women, whom I found to be far more collegial, less interested in playing god, more able to admit and clarify uncertainties of her case.

The next obvious and infuriatingly impossible step in saving lives is to revive the 1970's ACS campaign which featured "suspicious lumps and bumps" as a possible early warning sign of cancer. Amazingly, parents of teens and small children do not realize that odd lumps and bumps may be a possible early sign of cancer.

Virtually every sarcoma story begins with discovery of a suspicious lump. The lump is then ignored or misdiagnosed by a local physician, or, as in my daughter's case, by a series of local physicians/subspecialists.

"Don't worry, mom.  It's probably just a cyst.  Slam a book on it and it will go away." 

"The dermatologist can't see your child for four months. We aren't taking new patients. This is just a cyst." (The dermatologist's office was a virtual shrine to cosmetic treatment).

By the time patients get to tertiary care centers, they are, for all practical purposes, dead. Which may account for the wall of silence at pediatric hospitals.

The UK and Scandinavian nations have revised referral routes for patients with suspected rare cancers which present as suspicious lumps and bumps (see Sarcoma, Volume 2008: 378574). Not so the U.S. The health care system is too fragmented. Insurance companies resist referrals and obfuscate the referral process. Physicians await cost effectiveness studies.

The NCI attempted to address these and other issues through the 2004 Sarcoma PRG (Progress Review Group) (PDF). The Bush administration cut NCI funding, and sarcomas were too rare to warrant a Congressional earmark. 

By definition, all pediatric cancers are rare.