Online cancer resources invaluable for empowering parents of sick children

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
to expose medical error, rectify outdated practices — to save lives,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

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

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

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

"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.

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6 replies »

  1. ACOR is just amazing! I found it shortly after I got told I had cancer. Folks like Christine and many many others quickly reached out to me. I went from lost just doing as told by my doctor to having a multidisciplinary team handling my case. I can’t stress how important this is. No one doctor was allowed to treat me until the team approved. A coordinated approach can make a difference. When your dealing with something where a depressingly large percentage die every difference counts. Get to a cancer center!

  2. A lot of the brouhaha in my daughter’s case was due to limitations of her insurance, which refused out-of-state referrals. There is no saying how many tens of thousands of dollars would have been saved had she been referred to the proper experts in the first place.
    Our certified case manager finally clued us in: Best practices with sarcomas and other difficult-to-diagnose tumors is to send pathology samples to the top three “niche experts” in the country. In cases like my daughter’s, where there was little consensus on diagnosis (another story altogether), you take the best two out of three opinions and move on, knowing that you have done your best, that you are truly at the limits of human knowledge.
    This is far different from a chain of local sub-specialists — the radiologist, the orthopedic surgeon, the dermatologist — saying, “Don’t worry, mom. It’s probably just a cyst.”
    It’s far different from the teams of semi-experts at pediatric tertiary care centers contradicting their colleagues, all the while insisting that they are the best in the field.
    One of the most sane recommendations offered by the British National Health Service for referral of suspected pediatric cancers is to respect parent and child intuition. If “the mom” or the child notes something out of the ordinary, listen.

  3. Bravo to Christine and ACOR!
    Perhaps the health care system would be more responsive to patient needs if they focused on what of all these errors, misdiagnoses, repeat exam, labs, etc. and subsequently increased treatment needs cost them. Oh, that’s right, there is no system. Just a conglomeration of competing providers and insurers serving their own best interests. The health care bubble will be the next to burst. Until we, as a nation, force these entities to interact for the best patient outcome, and be financially accountable when they don’t, patient’s are on their own: bleeding in a sea full of sharks.
    I believe universal health care is the only way to begin addressing this issue.

  4. Unfortunately we still hear lots of similar stories. We are lucky that we live in the age of the internet where patients and caregivers can find out about rare diseases such as sarcoma, how they are treated and suggestions for where to receive treatment. Patients and their caregivers need to be informed and take an active part in their treatment decisions. The best providers appreciate and welcome the informed, actively involved patient.

  5. Christine’s comment that she was “guided by a sophisticated ACOR list whose members were at ease with PubMed, the NCI sites and more” should ring a loud bell in the health care community. As a list administrator for several ACOR pediatric cancer lists, this is exactly what I observe in each list: A core contingency of educated and journal-article informed members who set the bar for list discussions. When listmember parents approach their child’s health care team with questions, they should be – and usually are – listened to. If they are ignored, or if they don’t like the answers they are given, they network with other parents to find more suitable treatments and doctors.
    Another issue has been one of my crusading points for years. Before treatment can begin, the cancer must be diagnosed as such (and properly). I have read time and time again diagnosis horror stories of ACOR listmembers. Many childhood cancers are not diagnosed until many weeks of repeated, non-productive visits to a pediatrician (or PCP), and by that time the cancer has advanced to a higher stage and has to be treated more aggressively.
    Granted, any one pediatrician may see few or no cases of pediatric cancer in his or her career, still, doctors need to be constantly alerted to the symptoms of childhood cancer. Parents too need to be educated. I wrote a web page on the signs of childhood cancer and have tried to get a pamphlet of these signs into pediatric doctor’s offices. Currently, Candlelighters Childhood Cancer Foundation is in the process of producing just such a pamphlet.
    Kudos to Christine for her work to alert all of us to the issues of pediatric sarcomas.

  6. Searching for the most experienced doctors is particularly important with rare cancers or difficult cases. A lot of them have never seen a sarcoma, or even a leptomeningeal carcinomatous case in their life.
    What Christine says about having great confidence, particularly women, whom she found to be far more collegial, less interested in playing god, more able to admit and clarify uncertainties of a case, I can relate to.
    I remember when my wife had leptomeningeal carcinomatous. A bright, young female medical oncologist at our local community hospital pulled me aside and told me that her oncology associates did not have any idea how to treat her.
    That was after she had experienced her male colleagues ignoring her “standing orders” (as the admitting physician) to perform a spinal tap and an “enhanced” MRI of the brain and brain stem.
    Because of this, her male colleagues failed to diagnose cancer in my wife twice, before releasing her from the hospital, and afterwards, to fall and break her hip in four places.
    Hence, cancer medicine’s dark corners, driven by external forces such as what amounts to generating more of an advertisement sent directly to a patient, than patient information enough to make an informed consent.