Tuesday, December 30, 2008

Single with Cancer

Here is a link to an article about being single and facing a cancer diagnosis. Sharon, a sarcoma survivor, was interviewed for the story.

On Their Own

Saturday, December 27, 2008

Patient education

          People with rare cancers, such as sarcoma, may have different needs when it comes to patient relations and education.
         A person diagnosed with a common cancer has a much better chance of knowing someone who survived that kind of cancer. But people with sarcomas may end up comparing their cancer to someone with a different cancer, and that can lead to all sorts of misunderstandings.
        For example, carcinomas usually are identified by the site where they originate, such as “breast cancer” or “thyroid cancer.” This differs from sarcoma, which often is named for the cell it most resembles. This can cause confusion, not just for the patient, but also for health-care workers who aren’t familiar with sarcoma. A woman with angiosarcoma in her breast may understand only that she has cancer in her breast, and a patient educator may give her material on “breast cancer.”
        The confusion is compounded by the fact that there are at least 50 different subtypes of sarcoma, which often behave differently and are treated differently.
        Let’s say Jane goes to the local hospital, where a gynecologist discovers her “fibroid” is uterine leiomyosarcoma (ULMS). She talks to a friend who had radiation and chemo for breast cancer, and Jane begins to wonder why her doctor didn’t offer those options to her.
        She decides to get a second opinion from a comprehensive cancer center. When she calls to make an appointment, she tells the scheduler that she had cancer in her uterus. She is referred to gynecologic oncology.
         Jane reads about uterine cancer (carcinoma) on the Internet, and some things don’t make sense to her. At the patient education center at the cancer center, she gets more information on uterine cancer (carcinoma). In the gyn clinic, there are no brochures on sarcoma.
         Finally, she understands that she has sarcoma. She discovers the Sarcoma Alliance, and she learns that her cancer center has a sarcoma department. Although she likes the gyn oncologist she sees, she’s outraged that she didn’t have the option of seeing someone in sarcoma. She complains to patient relations. She learns that she always had the option of seeing doctors in both gyn and sarcoma -- she just didn’t know it.
          If health-care workers are attuned to the existence of rare cancers, they can head off confusion and anger in patients. 
          -- Suzie Siegel, board member

Tuesday, December 23, 2008

Alliance Board Member Visits Russia

Following is a report from Dave Murphy who visited Russia after attending the annual meeting of the Connective Tissue Oncology Society meeting in London.
While on vacation in Europe I visited Katerina Kiseleva, Executive Director of Parents and Children Against Cancer (CAPAC) http://www.capac.ru/ in St. Petersburg Russia. Katerina arranged for me to visit the pediatric cancer ward at City Hospital #31, Dept of Pediatric Oncology/Hematology. Picture is of me with Dr. Margarita Belogurova, head of the department (note Sarcoma Alliance brochures and 'Sarcoma Knows No Borders' wristbands on the desk).

We also visited the National Scientific Research Institution of Oncology. Picture is of me with Dr. Yuriy Punanov, head of their pediatric department.

I talked about the CTOS conference, and the iSPAN meeting before the conference. The obvious first question I was asked was "you only do this for people in your countries, don't you?" and my response was that the SA programs and services are for ANYONE with sarcoma in ANY country, and also that the efforts of other sarcoma organizations raising funds for research would benefit sarcoma patients worldwide.

Each of them allowed me to be escorted into the wards and meet each child in the ward. I met a few sarcoma patients, osteosarcoma, both recent amputees, and talked with some of the doctors in the ward. I gave out California calendars and Halloween candy and briefly spoke with the children and parents in each room (with Katya translating).

I asked the doctors about the types of sarcoma patients they see. They didn't really answer me, so I asked if they see patients with rhabdomyosarcoma, Ewing's sarcoma, chondrosarcoma, synovial sarcoma, peripheral nerve sheath tumors, etc.. The doctors were surprised I knew the specific sarcoma types, because they see patients with each of those types.

Children and Parents Against Cancer is an organization that helps ALL pediatric cancer patients. On each visit Katerina brought her organizations brochures and some gifts. She explained how CAPAC provides some assistance to some of the families, and arranges for excursions for some of the children out of the hospital on short trips around St. Petersburg, and trips to other countries like Ireland http://www.barretstown.org/ and the US http://www.holeinthewallgang.org/ .

When I spoke of the sarcoma chat I was introduced to the person that answers Russia's pediatric cancer hotline.Overall I was well received by everyone I met and I felt they were surprised that I was interested in visiting their facilities.

Then I started playing the tourist. The next picture is of me in the garden of Catherine the Great's Palace at Pushkin outside St. PetersburgDave Murphy

Friday, December 5, 2008

The Fearless Outrigger Team

The Lanakila Outrigger Team raised over $6,000 for the Sarcoma Alliance this past summer! For a report on their adventures see our Fall 2008 newsletter.

Tuesday, November 25, 2008

The Assistance Fund – A Note of Thanks from Drake’s Parents

by Arthur Beckert

We recently received a letter from a grant recipient from our Assistance Fund. This fund helps pay for second opinions from sarcoma specialists.

"As the parents of a teen diagnosed with sarcoma, we wanted to make the very best medical decisions for our son, but when we received conflicting opinions about his care my husband and I felt so helpless. This was our child’s life, and we didn’t know who to trust. Ultimately, we chose to seek out a synovial sarcoma specialist whose practice focused on teens and young adults. While our insurance company wouldn’t cover our visit to Dana Farber in Boston, there was no question that this was what we needed to give us peace of mind—and that’s exactly what we got. Thanks to our visit with Doctor Albritton, we felt that Drake’s prognosis was good enough to forego chemotherapy and finally move on with our lives. The trip to Boston also enabled us to visit Harvard and MIT and dream about a future where anything was possible. We are so grateful to the Sarcoma Alliance, not only for the grant that helped to cover the costs of our visit, but also for all the information and support we received on the Web site. You were definitely a source of hope during an extremely difficult time."

Saturday, November 15, 2008

Support Across the Americas

         Please check out two stories about sarcoma (here and here) in the Tampa Tribune today. One mentions Gustavo Davila, whose son, Alex, died of osteosarcoma. Gustavo arranged the first international conference on bone sarcomas last month in Ecuador, drawing doctors from South and North America.
         Gustavo also founded Jovenes Contra El Cancer (Young People Against Cancer).  I (Suzie) had the honor of attending a ceremony last week, marking the second anniversary of its founding in Quito, the capital. An orchestral quartet played in the Government Palace auditorium before dignitaries, including a representative of the president, gave speeches and pinned medals on about 40 young survivors.
         As the invitation said (in Spanish): "When generals return from war, they receive medals. ... When the young warriors against cancer fight day after day ... what do they receive?"
        Because I can't translate that well, I'll quote one English-speaker: Douglas Letson, an orthopedic surgeon in charge of sarcoma at the Moffitt Cancer Center in Tampa, who taught at the conference and spoke at the ceremony.
        "This is just the beginning for the children of Ecuador to get the care they need. I'm here for the children of Ecuador!" he said, his voice full of emotion.
        The next day, Leslie Schipani-Anderson of the Moffitt Foundation spoke on "social marketing," encouraging people to financially support nonprofits that improve society.
        I hope that survivors can continue to exchange ideas across borders. 

Saturday, October 11, 2008

A different kind of ovarian cancer

          My call for blog links brought a reply from Sharon Leming, who has ovarian leiomyosarcoma. She writes with such eloquence in My Life With Cancer. Here's an excerpt: 
Once in a while, I indulge in the fantasy of what my life would be like if one day, one glorious day, the cancer was gone and I could lay claim to my life again. I dream of the things I could do, of the the good I would do for the world, of the things I have lost that might be regained. I picture myself working, volunteering, driving, swimming, walking. It's a lovely, happy journey -- not a self-pitying one as it might seem, but one that is full of the unfettered hope of a child, the innocent belief that anything is possible. But then of course I am not a child, and I cannot waste a lot of precious time on pie-in-the-sky thinking. It's time to gird myself up for battle again, and to concentrate on finding peace WITHIN the battle rather than dreaming of life beyond it. 
          Women with ovarian cancers, both carcinomas and sarcomas, have been on my mind this week. A friend died of ovarian carcinoma Monday. The next day, I got a call from the M.D. Anderson Network, asking if I'd be willing to speak to a woman with ovarian leiomyosarcoma. (I volunteer for MDA's Patient & Caregiver Support Line as well as the Sarcoma Alliance's Peer-to-Peer Network.)
          This spring, I wrote a short article for "CONVERSATIONS: The International Newsletter for Those Fighting Ovarian Cancer." 
       Yvonne Cooper had cancer in an ovary, but she doesn’t call it “ovarian
       “I consider my cancer to be leiomyosarcoma of ovarian origin,” she said, referring to a rare cancer that resembles smooth-muscle cells. Leiomyosarcoma (LMS) can arise almost anywhere in the body. In the reproductive tract, LMS is much more likely to occur in the uterus. 
       “There are some women with ovarian sarcomas who feel like they get left out,” said Dr. Kian Behbakht, a gynecologic oncologist and associate professor at the University of Colorado at Denver. They may have friends with ovarian carcinoma, or they may know women with uterine LMS. He said the Internet can connect women with rare cancers.
       Cooper, who lives in Cincinnati, belongs to an online support list for LMS at www.acor.org. She was diagnosed in 2003 and has had three recurrences. She has had surgeries and chemotherapy and taken anti-angiogenic drugs.
       When treating someone with ovarian LMS, a doctor may look at the literature on uterine LMS or sarcoma in general, said Dr. Matthew Anderson, director of gynecologic oncology at Baylor College of Medicine in Houston. “It’s so rare that you have to generalize.”
       He’s confident that all gyn oncologists would know that LMS might need to be treated differently from an epithelial ovarian cancer. For example, the chemo Adriamycin is commonly used with LMS, he said, but not with epithelial ovarian cancer.
       “Because LMS is so rare,” Cooper said, “it is important to do some research and/or go to a sarcoma specialist to know what one's options are in getting appropriate treatment.”
        She recommends these Web sites: http://www.leiomyosarcoma.info/general.htm,
www.lmsdr.org and www.sarcomaalliance.com
          -- Suzie

Emory touts its sarcoma program

      I got my glossy Emory/Winship magazine in the mail and was delighted to see an article on Dr. Gina D'Amato becoming the director of the sarcoma medical oncology program at the cancer center in Atlanta. 
       Dr. D'Amato talked about her goal of opening multiple clinical trials. She also has helped start a sarcoma support group. 
       The Sarcoma Alliance's main Web site has information on sarcoma centers as well as support groups. 
       -- Suzie

Calling all bloggers!

      Do any of you blog about your experiences with sarcoma? If so, please give us your link -- and consider linking to us. Let's support each other! -- Suzie

Speaking freely on Blogtalk radio

         This is Suzie. I just spoke about sarcoma on Magda Santos' program at blogtalkradio.com/speakfreely. You can access our conversation at that site. I was supposed to talk about "Cancer, Love and Sex," but the facts about sarcoma were so shocking that we never got past that. 
         I hope others will find ways to talk about sarcoma. You never know who you will reach.

Tuesday, October 7, 2008

National Cancer Institute - Personalized Oncology

A great way to keep up with the latest in cancer research is to add yourself to the email list for the National Cancer Institute's Cancer Bulletin. The August 19 issues has an excellent overview on personalize oncology. http://www.cancer.gov/NCICancerBulletin/NCI_Cancer_Bulletin_081908

You can also subscribe to the bulletin at the above link.

Sunday, October 5, 2008

Greetings from Suzie

This is my first post on this blog, and I'm happy to be able to give you all a flower - a hearty sunflower shot by David Lubin, M.D. 

Thursday, September 11, 2008

International Sarcoma Patient Advocate Network


The International Sarcoma Patient Advocate Network (iSPAN) held its second meeting on October 31, 2007 prior to the annual meeting of the Connective Tissue Oncology Society annual meeting in Seattle, Washington. iSPAN is open to all patient advocacy organizations and committed individuals with the goal of fostering communication and collaboration to improve the lives of those diagnosed with sarcoma. iSPAN serves as a common voice to support sarcoma patient advocacy, legislation and research. This year over 20 individuals met
representing over a dozen organizations. Additionally, the meeting was generously supported by CTOS and by Novartis Pharmaceuticals, Inc.

The meeting began with a brief presentation from Arthur Beckert summarizing the history of iSPAN and the goals the meeting. One tangible outcome of the first meeting of iSPAN was the first comprehensive directory of sarcoma organizations. He hoped that advocacy groups would agree that many issues could be better addressed if sarcoma advocacy groups would work together. These include raising awareness, assuring that all sarcoma patients receive the best care in the most appropriate setting, increased funding for research,
giving more flexibility for drug research and approval for rare diseases, tissue banking, and patient registry.


Chappie Conrad, MD an orthopaedic surgeon at the Seattle Cancer Care Alliance and founder of the Northwest Sarcoma Foundation welcomed the group. He complemented everyone’s efforts and believes that it is very important for the provider community to support and work closely with patient advocates. Although there have been improvements in sarcoma care, he believes that the grading system needs to improve and there needs to be new and better drugs.

Raising Sarcoma Awareness

The group next talked about raising awareness about sarcoma in general and about the unique needs of sarcoma patients. Currently there are a number of sarcoma awareness events in the US, mostly in June and July. One step in raising awareness would be for the sarcoma community to agree on a common time for awareness events. Bruce Shriver of the Liddy Shriver Sarcoma Initiative gave a presentation about Team Sarcoma in July and the incredible growth this has had during the past few years.

The group agreed that designating July as Sarcoma Awareness Month would give everyone a long period of time to put together events to bring attention to sarcoma. Everyone agreed that there was no pressure or need for any organization to modify their existing calendar. However it is hoped that organizations would organize events and activities that would generate local, regional or national press coverage. These events could be coordinated with existing activities such as Team Sarcoma or could be held on their own. Events could include walks, runs, picnics, educational session at hospitals, and even include governmental proclamations of July of Sarcoma Awareness Month.

ARIAD – Upcoming Phase III Trial of Deformlimus

Camille Bedrosian, MD of ARIAD next gave a presentation on the upcoming Phase III trials of Deforolimus (formally AP23573). The trial will be open to those with metastatic soft tissue and bone sarcomas. Deforolimus is an mTOR inhibitor that affects cell growth, division, metabolism and angiogenesis. By blocking mTOR the cancer cells will starve and die. ARIAD recently received FDA approval for the Phase III study design and is starting to centers through out the world to conduct the clinical trial. They hope to enroll 650 patients
at 125 sites. More information can be found at www.succeedtrial.com.

Advocacy Initiatives

Mark Thornton, MD next gave an overview of the Sarcoma Foundation of America and it efforts to improve the FDA’s drug approval process for rare diseases. SFA along with the Alliance Against Alveolar Soft Part Sarcoma has petitioned the FDA to modify its drug approval process for rare diseases. This “Citizen’s Petition” can be approved through an administrative process and does not need changes in current regulations or law. Briefly this petition outlines a streamlined process for testing and approval for new agents for rare cancers. (Please contact the Sarcoma Alliance if you would like more information about this initiative)

Estelle Lecointe, AFPS, Ensemble contre le GIST gave a presentation on activities of the GIST community in France. The most important is their support of two studies.

What’s Next?

Everyone agreed that it is important that the advocacy community work together on the many issues of common interest. It is equally important that iSPAN serves as a vehicle of support for the sarcoma community so that every organization can continue to grow and prosper, retain their independence and stay true to their mission.

Mission Statement - March 2008

iSPAN is compromised of individuals and organizations from around the globe that desire to work together to improve communication, share information and address legislative and regulatory matters affecting sarcoma patients, medical professionals, and researchers. iSPAN members complement and benefit each other through shared communication and networking. In return, iSPAN serves as a common voice for sarcoma advocacy utilizing our strengths and diversity.

Gynecological Oncologists Welcome Sarcoma Advocacy

Gynecologic oncogists welcomed the Sarcoma Alliance to their 39th Annual Meeting in March in Tampa. For the first time, the Sarcoma Alliance had a table in the exhibit hall, and our organization and its mission were listed in material distributed by the Society of Gynecologic Oncologists (www.sgo.org).

During the conference I was able to talk with many physicians about sarcoma and the advocacy community. A prominent gyn oncologist thought uterine leiomyosarcoma (ULMS) was completely different from LMS outside of the gynecologic area. He had never heard of sarcoma departments at cancer centers, nor did he know about SARC (Sarcoma Alliance for Research through Collaboration at www.sarctrials.org.) He saw no point in a gyn onc talking to a medical oncologist in a sarcoma department. Another gyn onc who doesn’t do chemotherapy had never heard of the c-kit mutation or Gleevec. One doctor was reluctant to take a pamphlet, saying there’s little that can be done for ULMS. A few others expressed sadness, and perhaps futility.

But many others took an assertive stance to sarcoma, and welcomed pamphlets, pins, pens and wristbands. A few put on ribbons or wristbands right then. A common comment was: “I’ve got a patient who will be really interested in this!” A Brooklyn doctor loaded up on merchandise, saying LMS is so prevalent in the New York City area that someone should do a study. A doctor from West Virginia said the same. I assured doctors from outside the United States that their patients could use our services if they read English and have access to the internet.

Coding for insurance reimbursement continues to be an issue. Some health-care professionals code sarcoma by the site of origin, instead of using codes for “soft-tissue sarcoma.” This can result in the denial of treatment. Another issue is aromatase inhibitors for LMS patients. Some doctors prescribe these drugs, while others await further study.

Some of the gyn oncs research sarcoma. Although the meeting’s agenda listed no discussions of sarcoma, at least 14 posters mentioned it. Following is a summary of these studies.

Radiographic Studies

Doctors at Columbia University Medical Center in New York concluded that the cost of CT scans didn’t justify their use before surgery for uterine cancers, except in high-risk cases such as sarcomas. Doctors who saw a CT before surgery were more likely to handle a patient differently if she had a uterine sarcoma. An issue for patients is that doctors may not know a tumor is a sarcoma before surgery.

Korean doctors at the Asan Medical Center in Seoul studied uterine sarcoma. “PET or PET/CT was highly effective in discriminating true recurrence in patients with suspected recurrence and was highly sensitive in detecting recurrence in asymptomatic patients.”

Predicting Outcomes

A University of Miami study found ethnicity has little value in predicting stage, grade, histology, recurrence or survival of women with uterine sarcoma.

Doctors at Stanford and the UCSF, and UC-Irvine analyzed 831 cases of endometrial stromal sarcoma. Removing or preserving ovaries did not affect survival, nor did adjuvant radiation therapy. The poster also noted: “The excellent survival in patients with grade 1 and 2 disease of all stages supports the concept that these tumors are significantly different from grade 3 tumors.”

At Baylor College of Medicine and the M.D. Anderson Cancer Center, both in Houston, doctors examined
uterine smooth-muscle tumors of uncertain malignant potential, called STUMP. They found that recurrence was more likely in younger women, and they urged more research on menopause status and the use of hormones.

Another Baylor study found that removing ovaries did not affect the survival of young women with stage 1 ULMS. It suggested surgeons leave ovaries alone if they look normal.

A ULMS study at Stanford and UCSF found metastases in the lymph nodes of 6.6 percent of the patients who had their lymph nodes removed, and those patients didn’t live as long. Removing ovaries didn’t appear to affect patients’ survival.

UC-Irvine did a 20-year review of ULMS patients and found that they were less likely to have a pelvic recurrence if they had radiation after surgery. Patients who got radiation also were a little more likely to make it to the 5-year mark, but overall, they didn’t live any longer than women who didn’t get radiation. Patients who got Gemzar plus Taxotere lived longer than those who got other forms of chemo.

This last poster underscores the need to update the uterine sarcoma pages on the Women’s Cancer Network (www.wcn.org/), which were last updated in the fall of 2006. They still mention only two chemo drugs for LMS: Adriamycin and Temodar. The site was created by the Gynecologic Cancer Foundation (www.thegcf.org), which is affiliated with the SGO. The GCF also
published the 2007 State of the State of Gynecologic Cancers. The report is geared toward initial treatment. Reading the report, a patient might not realize she needs routine imaging to check for recurrences, and if the
disease does recur, she might benefit from chemo or more surgery.

As is true for many cancer publications, “cancer” often refers only to carcinoma in the GCF report. A woman like me, with a gyn cancer in a site other than the uterus, might be confused by the list of causes, treatments, etc.

For more information on gyn sarcomas, please see my 2006 articles at:


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