Second opinions at multidisciplinary centers

Many people with sarcoma could live longer and better lives if they saw a sarcoma specialist sooner. That’s why the Sarcoma Alliance lists multidisciplinary sarcoma centers and gives grants to those who have to travel to get a second opinion.

Travel is common because more than half the states in America lack a multidisciplinary sarcoma center that treats adolescents and adults. Parents may need to travel to get their younger children seen, and they also can apply for grants, but they have more options.

“My feeling is that any pediatric hospital is suitable for the three common pediatric sarcomas: rhabdomyosarcoma, osteosarcoma and Ewing,” says Alliance President Joan Darling, a volunteer with the Children’s Oncology Group, which has a map of its member hospitals.

Because there is no official designation or board certification for a “sarcoma specialist,” people may define it differently. In 2004, the National Cancer Institute convened the Sarcoma Progress Review Group, which recommended patients be treated at multidisciplinary sarcoma centers, and it listed criteria for the centers. Here is the Alliance’s updated version:
• A sarcoma medical group consisting of all specialties, including surgical, orthopedic and medical oncologists; radiologists; pathologists; and oncology nursing as well as rehabilitation services.
• At least one group member who belongs to a sarcoma-oriented medical organization, such as the Connective Tissue Oncology Society (CTOS).
• Publications concerning sarcoma in peer-reviewed journals.
• Sarcoma conferences (e.g. Tumor Board), where sarcoma group members meet at least once per month to discuss patient care issues.
• At least 100 sarcoma patients seen per year.
• MRI imaging available; PET scans desired.
• Patient enrollment in clinical trials.
• Strong support personnel such as social workers, psychologists and psychiatrists.
• Sarcoma support group desired.

“Since there are approximately 50 types of sarcoma, accurate diagnosis by a world-class pathologist is the first step in an optimal treatment plan. Surgery, radiation therapy and chemotherapy are all critical approaches toward treatment of the primary tumor, prevention of tumor spread, and therapy of sarcoma even after it has spread to other sites. Radiologists are key to diagnosis, recurrence, and assessment of response to therapy. Rare diseases such as sarcoma are best managed by an experienced multidisciplinary team at a comprehensive cancer center such as The Sylvester Cancer Center in Miami,” says Jonathan Trent, MD, PhD, a sarcoma medical oncologist who recently moved to Miami from the M.D. Anderson Cancer Center in Houston.

CTOS and the Musculoskeletal Tumor Society will hold a joint annual meeting this week, Oct. 26-29, in Chicago. Dr. Trent will present research there. The meeting will draw hundreds of sarcoma experts from around the world, along with volunteers from the Sarcoma Alliance and staff from other nonprofits. Ironically, Illinois does not have a multidisciplinary sarcoma center, according to Alliance criteria. But the Chicago area does have sarcoma doctors who participate in clinical trials.

Across the country, many patients fail to get state-of-the-art care. They may not know that sarcoma specialists and multidisciplinary centers exist. Or, they may lack the desire, time or money to travel to one, the Progress Review Group report says.

“Additionally, physicians and surgeons in small- and moderate-sized hospitals often want to maintain control of patients … for economic and other reasons,” the report says. “However, many physicians do not appreciate how complex the care of sarcoma patients has become and are not aware of the many alternative care strategies available.”

Especially with a rare cancer, most doctors will not mind if a patient seeks a second opinion. It's a bad sign if a physician is offended. Sarcoma centers allow patients to schedule appointments without a referral from their current physicians, although some insurance plans may require a referral for reimbursement. Sarcoma centers often can help patients with insurance questions, as well as travel plans.

After getting a second opinion, some patients may choose to get part or all of their treatment closer to home, with a doctor in the sarcoma center consulting with the local doctor. If nothing else, a second opinion may reassure patients that they are getting the best treatment available.

23 and Me’s Sarcoma Research Continues

One of the 23 and Me scientists has been analyzing sarcoma data with the help of Drs. George Demetri and Bob Maki. Thus far, there are no specific regions that may be considered uncontroversially “genome-wide significant,” but a number of interesting regions appear to have suggestive associations and may become genome-wide significant with additional data. Because of the promising nature of their analysis, they are still interested in having more genetic material to analyze. A simple saliva sample is all that is needed. More people = more power for the research.

While they are still recruiting people with any sarcoma diagnosis into the community, they are particularly interested in increasing participation from individuals with the following subtypes:

· leiomyosarcoma

· uterine leiomyosarcoma

· osteosarcoma

· chrondrosarcoma

· liposarcoma

· endometrial stromal sarcoma

· fibrosarcoma

· synovial sarcoma

For more information please read:

https://www.23andme.com/about/press/23andme_achieves_milestone_in_building_sarcoma_research_community/

Brush Dance sells holiday cards to benefit the Alliance

If you haven't purchased holiday cards yet, consider sending some that not only express the joy of the season, but also support a great cause. Brush Dance has several great looking cards that support the Sarcoma Alliance, and through Oct. 13, shipping is free. Brush Dance donates a portion of each box sold to the Sarcoma Alliance.

The design at the left is here. Or, see the snowman, reindeer, ornament or stocking.

Sarcoma Alliance updates directory of nonprofit organizations

Since 2006, the Alliance has maintained a directory of U.S. and international sarcoma organizations, including their mission statements, accomplishments and contact information. The 2011 directory is here.

The directory helps nonprofits cooperate and collaborate. Sarcoma patients and their families and friends also can use it to find organizations that serve their needs. People may find one nonprofit that does everything they want. Others will seek different things from different groups.

Cancer nonprofits can be divided into those that provide direct services, those that concentrate on raising money for research, and those that do both. The Alliance fits into the first category. It offers guidance, education and support on its main website, with more information each month. A peer-to-peer network, live chat room, blog, Facebook page, YouTube channel and discussion board let people support one another and share information. The Alliance also helps start sarcoma support groups, and provides financial assistance to patients seeking a second opinion from sarcoma specialists.

Although the Alliance advocates for more research and encourages people to consider clinical trials, its goal is to help people right now. Many patients could live longer and better lives if they got the correct diagnosis and access to more effective treatment. But many don’t because doctors who lack expertise in sarcoma treat them, at least initially.

Of the nonprofits that fund research, some give money to particular doctors and scientists or to particular institutions. Some have medical advisory boards that review grant proposals and pick the ones they consider best. Some fund basic science while some pay for clinical trials. Some finance research on sarcoma in general while others aim at a particular subtype, such as leiomyosarcoma.

Newly diagnosed patients can get overwhelmed searching the Internet. The Alliance recommends: Take a deep breath and then start a list of the nonprofit websites you visit and what they offer. Note which ones you like and dislike and your reasons, such as: “confusing.” Keep in mind that an organization that confuses you in the beginning may make more sense later. In other words, your knowledge and needs are likely to change over time.

If you can afford donations, don’t forget the nonprofits that inform and support you. If you prefer to donate for research, are you hoping that your money will help find a cure for you? If so, you may want to look at the time it takes to bring a new drug to market and choose research that is further along. But the timeline doesn’t matter as much if you simply want to support scientific discoveries aimed at ending sarcoma one day.

Please contact the Alliance to add a nonprofit to the Directory of Sarcoma Patient Advocacy Organizations and Foundations or to update an existing listing.