Austin fundraiser March 22-23

By Suzie Siegel

Artist Mark Goad and Rio’s Brazilian Café are helping the Sarcoma Alliance raise funds and awareness March 22-23.

This month, the cafe is exhibiting art by Goad, who has been a professional artist for more than 30 years. He created work depicting sunflowers and photographed them for cards that will be sold to benefit the Alliance. The cards will sell for $5 apiece or six for $20. They should be up shortly in our store.

I've known Mark since birth. We were born in the same hospital, an hour apart. Having a friend with sarcoma, he says, “has taught me so much about life and how people survive. No one needs to go through this alone.”

“I take recycled Texas King Cotton fiber pulp, steep it in natural dyes and local water," he says, explaining his artwork. "The liquid images are assembled on screens, and transferred onto drying blankets where they dry into sheets of textured paper. The cards are reproductions of sunflowers I made by tearing pieces of the paper into petals.”

I'll sell the sunflower cards and other merchandise March 22-23 at Rio's, 408 N Pleasant Valley Road, in East Austin, close to downtown. There will be a happy hour from 4 to 7 p.m. that Friday, featuring free appetizers, $1 off all beer and wine, and free caipirinhas, Brazil’s national cocktail.

Elias Martins, a native of Rio de Janeiro, is the chef. He and Ben Googins met in Brazil in 1998; they moved to Austin in 2006 and started selling their food at the Downtown Farmers' Market. In 2010, they opened the cafe.

Mark introduced me to Rio's, and the owners have been so enthusiastic about helping the Sarcoma Alliance. To show my support for them, I ordered their yummy cheese breads from Foodzie, and I’m really looking forward to eating my way through the rest of their menu.

I had planned to go to Austin anyway to represent the Alliance at the annual meeting of the Society of Gynecologic Oncology, as I've done since 2006.

Nominate excellent health-care professionals

Have you gotten excellent care from a doctor, nurse, social worker or other health-care professional? If so, nominate them for the Sarcoma Alliance's new Outstanding Care Awards.

People with sarcoma or their loved ones can write nominating letters to info@sarcomaalliance.org or Sarcoma Alliance, 775 E. Blithedale Ave. #334, Mill Valley, CA 94941.

Excerpts of nominating letters will be put on our website so that new patients and new health-care providers can see what we value. On the website, we already list multidisciplinary sarcoma centers, and we help reimburse patients who have to travel to a sarcoma specialist for a second opinion. We want patients to see doctors with up-to-date knowledge and expertise in sarcoma.

But it’s time to recognize other qualities: Do they listen? Do they communicate well? Do they show compassion, kindness and respect? Do they spend enough time with you? If something goes wrong, can they take charge to get it resolved?

An example of someone who provides outstanding care is Gina D’Amato, above, a medical oncologist in Atlanta, who won the Excellence in Care Award from the Leiomyosarcoma Direct Research Foundation in 2006.

“You guys are all about supporting the patient,” Dr. D’Amato said, explaining why she recently joined the Sarcoma Alliance board. She had just returned from a medical mission trip to Peru.

“I have all the respect in the world for her,” said Al Meller of Harrison, Tenn., who lost his wife Judy to leiomyosarcoma in 2005. For Dr. D'Amato's 2006 nomination, he recalled how she took them on a tour of her research facilities, "talking about the research she was doing, introducing us to some of the technicians, and showing us the equipment, etc." He recalled two other memories, from the beginning and the end.

“The beginning was the very first meeting when Judy and Dr. D'Amato met to discuss her possible admittance into the clinical trial of AP23573 [now known as Ridaforolimus]. While Judy still felt quite well, her situation was rapidly deteriorating after being dismissed by M.D. Anderson [Cancer Center], and she didn't meet all the criteria for admittance into the trial.

“Dr. D'Amato exhibited such a caring, friendly and confident attitude, and still held out hope for the trial or other potential treatments. Her hopes were backed up by action. She went to bat for Judy and obtained the necessary clearance. A move we both were very grateful for and remained so.

“At the end, while the clinical trial was successful for Judy, she succumbed to a combination of organ failures due to other causes. But the one aspect that I shall always remember is the friendly, caring, compassion Dr. D'Amato showed to Judy and I in the final days even after Judy had been placed in an end-of-life coma and was no longer under Dr. D'Amato's care.

“Daily, she would still come and stand by Judy's bedside and then visit with me. I have every confidence that helped Judy in her transition. I know her advice to me to seek counseling was helpful. I did so and it opened doors for me to start a new life - which I have. But those six months that we experienced Dr. D'Amato's care will always hold a very special place in my heart. I know they did in Judy's.”

Most doctors who work in comprehensive sarcoma centers are attached to universities, Dr. D’Amato said. They get promotions, pay raises, tenure, travel money, better facilities, etc., based on factors such as securing research grants, publishing papers and getting patents. They must be skilled clinicians, she said, and avoid patient complaints.

“But you don’t get extra points if your patients love you.”

Last fall, at the annual meeting of the Connective Tissue Oncology Society, Dr. Lee Helman, a cofounder, also talked about academic medicine. He said many papers submitted to CTOS – maybe as many as half – did not advance the science of sarcoma.

“We know it’s irrelevant, but I understand the need to publish,” said Helman, scientific director for clinical research at the Center for Cancer Research at the National Cancer Institute in Bethesda, Md.

Although the Alliance has oncologists on its Medical Advisory Board, Dr. D’Amato is the first M.D. on its Board of Directors, said Executive Director Arthur Beckert of Mill Valley, Calif., where the national nonprofit was founded in 1999.

Dr. D’Amato is the global medical director of TRM Oncology, a medical communications company. Previously, she worked at Moffitt Cancer Center in Tampa and as director of sarcoma medical oncology at Emory University in Atlanta. She has nine publications and has spoken nationally on sarcoma research and patient care. She helped start a sarcoma patient support group, and she has long encouraged patient involvement.

Cold Hands Paddle on Sunday

If you are in the Southern California area on Sunday, head to Cabrillo Beach in San Pedro for the Cold Hands Paddle. Not only can you enjoy live music and cheer on the paddlers, but there also will be a Sarcoma Alliance booth staffed by some of the great people who volunteer for us.

The photo is from last year's event. Brrrrr.

Cold Hands is a sponsor of Ocean of Hope, a series of paddleboard and outrigger-canoe races in California and Hawaii to raise money for the Sarcoma Alliance. A stand-up paddleboard, donated by Joe Bark, will be raffled off.

Lifestyle choices: sarcoma v. carcinoma

Carcinomas occur more commonly among older individuals and can be attributed to various lifestyle choices. Smoking cigarettes, having a faulty diet, and lack of exercise can all contribute to the development of a carcinoma. In contrast, sarcomas can occur in people of all ages – from newborns, infants, teenagers, to young and mature adults. Also unlike carcinomas, a sarcoma isn’t thought to be associated with any lifestyle choices. You can’t get sarcoma from eating the wrong foods, making love, or from insufficient exercise.

-- from SARC (Sarcoma Alliance for Research Through Collaboration), a cooperative of the top U.S. sarcoma doctors

By Suzie Siegel

Let the party begin!

All joking aside, this information matters to the science of sarcoma and the treatment of patients. Scientists need to know what does and does not cause sarcoma so that we can do a better job of prevention.

People who are athletic, eat a healthy diet, don't smoke or drink, take vitamin supplements, etc., can still get sarcoma. They may say: "I did everything right! It's not fair. How could I have gotten this terrible cancer?"

No matter what their lifestyle, most people diagnosed with sarcoma will wonder what caused it, and many will feel guilt or shame that they did something wrong. One man I knew went on a very strict diet, but when his sarcoma returned, he questioned whether it was his fault for eating a slice of pizza months before.

Once, I listened in disbelief as an RN told a patient that her bad diet had caused her sarcoma, and now she had to eat better. The patient was getting chemo, and she was not supposed to eat salads or raw fruits and vegetables, unless they could be peeled.

Some chemo patients struggle with nausea and vomiting, not wanting to eat anything. I remember another woman who was dangerously thin, and her loved ones kept stressing that she had to eat only the most nutritious foods. Her sarcoma specialist and a registered dietitian told her that she could eat candy bars if that's the only thing she could stomach. That advice, plus better medical treatment, allowed her to put on weight and regain strength. Of course, she didn't eat only candy bars, but a candy bar now and then helped.

Please don't get me wrong -- I'm not saying that lifestyle doesn't matter at all. It makes sense to do what you can to strengthen your body for whatever may lie ahead. Just don't blame yourself for your sarcoma.

Watching sarcoma on TV

by Suzie Siegel

You can understand why TV writers love rare diseases. They sound exotic and scary, and if the script gets it wrong, not that many people will know.

I wrote about this in 2010 in regard to an episode of “Grey’s Anatomy” involving a ballet dancer. Last month, “Grey’s Anatomy” and its spin-off, “Private Practice,” had crossover episodes featuring a woman with gliosarcoma. I asked Ralph Lehman, a Tampa neurosurgeon, to watch "Private Practice."

"Gliosarcoma ... is a rare variant of glioblastoma and, as best I know, they do not survive more than a year after surgery and most far less," he said. “The doctors talked to the patient as if she would be cured. You wouldn’t want to give that impression.”

Other aspects struck him as curious: "I don’t think anyone puts stents into brain arteries to do their tumor surgery. Sometimes one might (very unusual) put a catheter up into the neck vessels or even up into a vessel in the head itself but this is introduced from below and is therefore pulled out from below, not through the craniotomy defect (i.e., from the surgical field itself).

"The tumor was on the right side of the head and someone mentioned possible speech defects as a hazard of surgery. Unlikely unless the patient was left-handed. The postop recovery seems a bit rapid and the dressing a bit scant, but it is TV."

Here are some more thoughts about sarcoma on TV:

Understand that surgery may not be a cure-all. When a surgeon says he got all the cancer, a lot of patients think they’re cured, and sometimes they are. But doctors need to know how to deliver bad news, just as they need to know how to give hope. They need to take the time to explain your disease to you, and they need to plan for follow-up care.

You need a specialist, at least for a second opinion. The Sarcoma Alliance recommends multidisciplinary sarcoma centers and children’s hospitals with experts in sarcoma pathology, radiology, medicine, surgery, social work, etc.

“You don’t want the person running the CT scanner doing your neurosurgery,” joked Executive Director Arthur Beckert of Mill Valley, Calif.

“On TV, the same doctors see you in the ER, the OR, the ICU and the floor,” said board member Marites Tullius, laughing. She’s a nurse practitioner in a Los Angeles County hospital. “They know everything about everything.”

Last year, "Grey's Anatomy" featured a young ballet dancer with osteosarcoma. His chemo didn't work, and it appeared as if his only option was amputation. He and his parents argued that dance was his life, and he couldn't live without it. He insisted the doctors watch him perform, and they were so moved that they did more research and came up with a way that he could keep his leg.

Don’t dance around – see a specialist who already knows the latest techniques.

Oncologists generally don’t treat both adults and children. For example, the ballet dancer was treated at Seattle Grace, not by an oncologist in a children’s hospital.

“It has always bothered me that regular TV doctors treat pediatric cancer patients. They did on ‘ER,’ ” said board President Joan Darling, a biologist in Lincoln, Neb., who watched the show with her daughter when the teen was being treated for rhabdomyosarcoma.

The same thing happened last year on “House,” when a teenager was diagnosed with a “lymphoid sarcoma” of the humerus. The doctors decided on amputation, but the girl refused because she hoped to set a record as the youngest person to sail solo around the world. A medical student gave the girl a medication to cause a cardiac incident, and when she was unconscious, her parents signed a consent form for the amputation.

Seek a second opinion. The Alliance has an assistance fund to help reimburse people who seek a second opinion from a sarcoma specialist. That’s what the girl with "lymphoid sarcoma" needed.

Alliance board member Gina D’Amato, a medical oncologist in Atlanta, wondered if the scriptwriters meant lymphosarcoma, which would be treated with chemo like a lymphoma, not with amputation. Or, was it a subtype of soft-tissue sarcoma that arose in a lymph node and spread to the bone, or a bone sarcoma that spread to a lymph node? In any case, she said, the parents would want to consult with someone experienced in sarcoma.

You have the right to informed consent. No one should force or trick you into treatment. Doctors should fully explain procedures, risks and side effects. Sarcoma centers also should have social workers who can help patients make medical decisions.

Test results often take time. In “House,’’ the girl’s pathology results came back within a day. In “Private Practice,” Dr. Lehman wondered how the surgeons were sure the woman had gliosarcoma before pathologists examined a tissue sample.

I've waited a couple of weeks for results. Also, sarcoma often is misdiagnosed at first. Mine was. You need a pathologist experienced in sarcoma to confirm the diagnosis.

For more on medical myths, see this and this.