FDA Hearing on Morcellation
The FDA will hold an official public hearing on morcellators and the risk of spreading and upstaging sarcomas on July 10-11 from 8:00am - 6:00pm EST in Washington, DC. Though the deadline for written submissions requesting to speak at the hearing has passed, interested parties are invited to submit their online comments about the issue, before or after the hearing, with a deadline of August 11, 2014. Background material for the hearing is available online, and a webcast will be available during the hearings.
Sarah Trainer and LMSdr's Sarah Robinson are organizing an informal dinner reception at the Silver Spring's Sheraton on the evening of July 10th. This is a unique opportunity for LMS patients, families and advocates to meet in person during the hearing. Those who wish to attend should e-mail Sarah Trainer or Sarah Robinson.
Participate in the International Sarcoma Kindred Study
The International Sarcoma Study is a resource to investigate the heritable aspects of adult-onset sarcoma. The ISKS is available to researchers worldwide and consists of epidemiological, clinical and molecular data and biospecimens. We currently have over 1100 families participating. Recently ISKS investigators were very fortunate to be awarded an International Collaborative Grant by the Wendy Walk and the Liddy Shriver Sarcoma Initiative to further work on inherited sarcoma predisposition.
What does participation involve? Study participants are asked to complete a questionnaire and provide information for a family pedigree detailing any cancers that have occurred. We also ask for a blood sample and in some cases we invite family members to participate in the study also. We ask permission to access medical records or the equivalent to be able to verify the information that has been supplied.
Am I eligible to participate? Patients with a confirmed sarcoma diagnosis (>18yrs of age at time of consent) are eligible to participate whether there is a family history of cancer or not.
How can I become involved? We currently have recruitment sites open at key sarcoma clinics in many parts of the world (Box 1). Study participation is most efficient if families can attend one of these clinics. However we realize that it is not possible for all those who might want to participate to attend one of these centres.
If you would like to participate in the ISKS but are unable to travel to a recruitment clinic please contact the ISKS global study centre (Box 2). The ISKS team will ascertain your eligibility for participation and ask for some information about your location. The team will then let you know what participation would involve in your particular circumstance and facilitate your involvement should you choose to go ahead.
ASCO 2014 Report: Medical highlights in GIST & Sarcomas
Sarcoma Patients EuroNet has published a comprehensive report of medical highlights from the ASCO 2014 meeting, written by Dr Axel Le Cesne at Gustave Roussy Institute in Villejuif, France. Sarcomas and GIST were presented at five plenary and parallel sessions. These sessions were rich in terms of innovation and therapeutic concepts, reporting study results that may have an impact on daily practice, whether in GIST or sarcomas.
The sarcoma community thanks Dr. Le Cesne for this excellent summary which will benefit GIST and sarcoma patients and patient advocacy groups.
V11N4 ESUN Copyright © 2014 Liddy Shriver Sarcoma Initiative.
Community Update: Selected Archives
Identifying and Addressing the Needs of Adolescents and Young Adults with Cancer: Workshop Summary
This report is a summary of a workshop convened by the Institute of Medicine's National Cancer Policy Forum in July 2013 to facilitate discussion about gaps and challenges in caring for adolescent and young adult cancer patients and potential strategies and actions to improve the quality of their care. The workshop featured invited presentations from clinicians and other advocates working to improve the care and outcomes for the adolescent and young adult population with cancer. The report identifies gaps and challenges in providing optimal care to adolescent and young adult patients with cancer and to discuss potential strategies and actions to address them.
David Thomas Appointed as New Director of the Kinghorn Cancer Centre
Dr. David Thomas, a member of the Liddy Shriver Sarcoma Initiative's Medical Advisory and Editorial Board, has been appointed as the new Director of The Kinghorn Cancer Centre in New South Wales, Australia. The Kinghorn Cancer Centre is a joint venture of Garvan and St Vincent’s Hospital that brings together the scientific and medical expertise of the two partners to provide a personalised medicine approach to the treatment and care of cancer patients.
Thomas’s clinical achievements include leadership of the first trial of denosumab in the treatment of Giant Cell Tumour of bone, which was recently approved as standard of care by the US Food and Drug Administration. He leads several large-scale cancer cohorts, including the International Sarcoma Kindred Study, and Cancer2015, a genomic study of 10,000 newly diagnosed cancer patients in Victoria.
“I am especially interested in liposarcomas and osteosarcomas, sarcomas that affect fat cells or bone, and that interest extends from genomic research within tumours, all the way through to clinical trial,” explained Professor Thomas.
“The Cancer2015 program that I set up in Victoria is about bringing genomics into the field of clinical care. My plan is to implement a similar program in New South Wales, using the information drawn from the cohort to service the population of the State.” Read more...
An Opportunity to Take Action Against Unsafe Surgical Procedures for Women
Please consider reading the article Are Routine, Minimally Invasive Surgeries for Fibroids Safe? and then consider sending your US Senator the following e-mail as soon as possible to help put a stop to this extremely dangerous surgical practice.
[TODAY’S DATE]
Dear Senator [INSERT NAME HERE. Click to find your senators' e-mail address],
I am writing as one of your constituents in [YOUR STATE] to request a congressional hearing regarding a severe hazard in women’s health care treatments. Specifically, I would like to bring to your attention a deadly health hazard in a routine “standard of practice” in gynecological surgery. The practice is known as “morcellation” and is a commonly used procedure that could cause Stage 4 cancer in 1 out of 400-1000 unsuspecting women undergoing uterine surgeries. This hazard has been brought to the public eye through a petition initiated by Dr. Hooman Noorchashm and Dr. Amy Reed of Harvard Medical School which is located at http://chn.ge/1bMw526. .
One of the cancers of concern is uterine leiomyosarcoma. Leiomyosarcomas cannot be pre-operatively diagnosed as there are no salvia, urine, stool, blood or imaging tests that can be used to diagnose it. Tissue samples, obtained from either a biopsy or from an excised tumor, must be analyzed by a skilled pathologist who specializes in this rare cancer in order to render a diagnosis. The removal of a mass thought to be benign only to find out that it is a cancerous tumor and spread inside the woman’s body by morcellation can be devastating and deadly. You can read more in Are Routine, Minimally Invasive Surgeries for Fibroids Safe? by Sarah Salem-Robinson, PA-C which appeared in the January 2014 issue of ESUN which addresses this topic.
There is an urgent need to develop non-invasive diagnostic tests for sarcoma. Such tests will reduce the number of misdiagnosed sarcomas and dangerous morcellation surgeries and aid the oncological team in developing an appropriate treatment plan for the patient. Until this happens, I firmly believe the use of morcellation should be suspended as a uterine surgical technique. If the gynecological community is not prepared to do this, I strongly urge congressional hearings take place on the hazards of morcellation in uterine surgeries. The FDA's device regulatory processes and the gynecological training in medical schools need to be modified to account for the potential hazards of morcellation.
I believe that a congressional hearing is necessary to protect any more women from being fatally injured by the practice of morcellation. Please do not hesitate to contact me at [INSERT YOUR E-MAIL ADDRESS] with questions.
Thank you for your attention to this important issue.
Sincerely,
[INSERT YOUR NAME AND ADDRESS HERE]
The attitudes of people with sarcoma and their families towards genetic research
This study aimed to examine attitudes of individuals diagnosed with sarcoma and their family members towards genetics, genomic research and incidental information arising as a result of participating in genetic research. A questionnaire was administered to 1200 individuals from the International Sarcoma Kindred Study (ISKS). Respondents were divided into three groups: individuals affected with sarcoma (probands), their spouses and family members. Results were as follows: Approximately half of all research participants felt positively towards new discoveries in human genetics. Overall, more were positive in their attitudes towards genetic testing for inherited conditions (60%) but family members were less so. Older participants reported more highly positive attitudes more often than younger participants. Males were less likely to feel positive about new genetic discoveries and more likely to believe they could modify genetic risk by altering lifestyle factors. Almost all ISKS participants believed participants would like to be given ancillary information arising as a result of participating in genetic research. Conclusions: The only difference between the study groups was the decreased likelihood of family members being highly positive about genetic testing. This may be important if predictive testing for sarcoma becomes available. Generally ISKS research participants supported the notion of returning incidental genetic information to research participants.
Are Routine, Minimally Invasive Surgeries for Fibroids Safe?
Fibroids are benign smooth muscle growths of the uterus that are also known as leiomyomas. They are estimated to affect 50-80% of women at some point in their lives. Most fibroids are asymptomatic, but a significant fraction may cause symptoms, including heavy bleeding, pelvic pain or discomfort.
In the United States, it is estimated that 650,000 women will undergo a surgical myomectomy or hysterectomy for the management of symptomatic uterine fibroids.1 In the last decade, open exposure surgical hysterectomies ("C-sections") have been increasingly replaced with routine, minimally invasive hysterectomies that necessitate the use of an electric morcellator surgical device. Commonly used by gynecological surgeons, the morcellator is a rotary blade device that shreds a large mass (a presumed fibroid within the uterus) through small port incisions on the woman's abdomen, either laparoscopically or with use of a da Vinci robot. The morcellator, by virtue of its mechanics, is essentially a grinder with a vacuum. The morcellator’s fast spinning blade not only shreds masses for removal, but through centrifugal force may also disperse cellular particles from masses throughout the abdomen.
For many women, minimally invasive surgeries are safe; however, when a "presumed fibroid" is broken up inside the abdomen by a morcellator device, the end result can be a significant clinical problem if the mass turns out to be an unsuspected uterine cancer, such as a uterine leiomyosarcoma. When morcellation is used on a malignant mass, there is a risk that it will spread cancer cells inside the woman’s abdominal and pelvic cavity. Read more....
I Had My DNA Picture Taken, With Varying Results
Recently, several private companies have offered genetic testing as a way for people to learn more about themselves and their disease risk. People dealing with sarcomas and other diseases have shown interest in this testing as they seek to understand risks to their health and the health of their family members.
ESUN's editors were interested to learn of Kira Peikoff's experience as she viewed reports about her DNA from three different companies. In her New York Times article, Peikoff writes that the discrepencies in the three reports were "striking" and explains that each company was free to use different portions of her DNA to test for the same disease risk. The article describes for the layperson how complex and incomplete genetic testing can be:
"Imagine if you took a book and you only looked at the first letter of every other page,” said Dr. Robert Klitzman, a bioethicist and professor of clinical psychiatry at Columbia. “You’re missing 99.9 percent of the letters that make the genome. The information is going to be limited.”
Read more in the New York Times.
Also see "Interpreting Risk: Direct-to-Consumer Genetic Testing" from the National Cancer Institute and the International Sarcoma Kindred Study in ESUN.
"Hi, Billie...Wish You Were Here!"
In Canada, it is our Thanksgiving weekend. We gathered as a family at Mary's to share a potluck supper.
My Mom, at 89 years old, does not remember at times that Bill died. When it does come to her, she grieves deeply and cries. But, a short while later she will be on to something else, as if this 'news' was never real to her. We had already agreed, as a family, that if Mom asked where Bill was, we would tell her that he was in Toronto on business. This is our usual fallback, as Bill did much travelling in his work.
We all got ready for a group photo, with the usual crack ups and confusion that goes along with a timer set on the camera to say "cheese." The last one to run to our huddled group was Maureen (my bossy baby sister), yelling at me to NOT use the word "spaghetti," as it has been annoying her for years. Of course, we all collapsed at this and the smiles and laughter were captured in our family photo.
My mom, in her sweet loving innocence, waved as the camera went click and said, "Hi Billie, wish you were here!" I can look at that photo now, here on my laptop, and I can remember how, in the moment my mom uttered those words, I wished the same thing, too.
But, in the uncanny yet kind way that time helps us to heal, my heart did not break. Yes, we all wished that Bill was with us, and we all had tears and helped each other 'dry' them with a group hug. But we are getting so much better at being grateful that we had him in our lives...even though he left us too soon.
So, I write to give my thanks to all of you who help with my healing and give me so many chances to feel grateful. Some will receive this update at Thanksgiving. Others, who are dear to me for so many reasons, are reading it later because I could not risk adding to your own worries and challenges...even though it is I who will have lost some chances to feel 'grateful' from your shared words.
It is the 'gathering' moments which add meaning to my life. And, in some of your messages of your own pain and suffering, shown with courage and selflessness, I learn so many life lessons. Thank you for these. I weep 'well' more often now, and there is such a shift from the raw tears of overwhelming grief.
In French, Thanksgiving is known as "fête de l'Action de la grâce". The word 'grace' is joined with the meaning of being thankful. It seems to fit so well, in sentiment, with what happens in my memories and in my present.
Social isolation in adult survivors of childhood cancer
Long-term childhood cancer survivors may be at increased risk for poor social outcomes as a result of their cancer treatment, as well as physical and psychological health problems. Yet, important challenges, namely social isolation, are not well understood. Moreover, survivors' perspectives of social isolation as well as the ways in which this might evolve through young adulthood have yet to be investigated. The purpose of this research was to describe the trajectories of social isolation experienced by adult survivors of a childhood cancer. Data from 30 in-depth interviews with survivors (9 to 38 years after diagnosis, currently 22 to 43 years of age, 60% women) were analyzed using qualitative, constant comparative methods. Results were as follows: Experiences of social isolation evolved over time as survivors grew through childhood, adolescence and young adulthood. Eleven survivors never experienced social isolation after their cancer treatment, nor to the present day. Social isolation among 19 survivors followed one of three trajectories; (1) diminishing social isolation: it got somewhat better, (2) persistent social isolation: it never got better or (3) delayed social isolation: it hit me later on. Conclusions: Knowledge of when social isolation begins and how it evolves over time for different survivors is an important consideration for the development of interventions that prevent or mitigate this challenge. Assessing and addressing social outcomes, including isolation, might promote comprehensive long-term follow-up care for childhood cancer survivors.
V11N1 ESUN Copyright © 2014 Liddy Shriver Sarcoma Initiative.
Reproductive concerns of children and adolescents with cancer
The diagnosis of a potentially life-threatening cancer is one of the most traumatic events that can befall a young person and his or her family. However, fortunately, most young people will survive their cancer and its treatment and go on to lead a long and healthy life, with an appropriate expectation of being able to have their own genetic family. However, cancer treatment, including surgery, chemotherapy, and radiotherapy, can have temporary and permanent effects on fertility, including damage to the uterus and pituitary gland, and reduction, or obliteration, of gonadal function, with consequential loss of oocytes or spermatozoa, which may result in ovarian or testicular failure. As the gamete pool is nonrenewable, permanent gonadal failure precludes subsequent fertility with a patient's own genetic material. Awareness and acknowledgement of the likely future fertility implications of cancer treatment is an essential part of any discussion about proposed therapies. Options for girls and young women include freezing mature oocytes and ovarian tissue, as well as attempting to protect the ovaries from the gonadotoxic effects of treatment. Options for boys and young men include semen collection and storage as well as testicular biopsy with freezing of testicular tissue or spermatozoa retrieved from the tissue. Fertility options can now be offered with increasing optimism about success and the provision of a genuine opportunity for having a family. While the initiation of cancer treatment is sometimes truly urgent, the opportunity for a detailed discussion about implications for fertility is of paramount importance for patients and their families and provides both reassurance and optimism about the future.
Child-rearing in the context of childhood cancer
Elevated distress has been well documented among parents of children with cancer. Family systems theories suggest that cancer-related stressors and parental distress have the potential to affect child-rearing practices, but this topic has received limited empirical attention. The present work examined self-reported child-rearing practices among mothers and fathers of children with cancer and matched comparisons. Medical and psychosocial professionals with expertise in pediatric oncology selected items from the Child-Rearing Practices Report (CRPR) likely to differentiate parents of children with cancer from matched comparison parents. Then, responses on these targeted items were compared between parents of children with cancer (94 mothers, 67 fathers) and matched comparisons (98 mothers, 75 fathers). Effect sizes of between-group differences were compared for mothers versus fathers. The results of this study were: Pediatric oncology healthcare providers predicted that 14 items would differentiate child-rearing practices of parents of children with cancer from parents of typically developing children. Differences emerged on six of the 14 CRPR items. Parents of children with cancer reported higher levels of spoiling and concern about their child's health and development than comparison parents. Items assessing overprotection and emotional responsiveness did not distinguish the two groups of parents. The effect size for the group difference between mothers in the cancer versus comparison groups was significantly greater than that for fathers on one item related to worry about the child's health. The study concludes that parents of children with cancer report differences in some, but not all, domains of child-rearing, as predicted by healthcare professionals.
V10N5-6 ESUN Copyright © 2013 Liddy Shriver Sarcoma Initiative.
Dr. Raphael Pollock to Become Chief of Surgical Services at Ohio State Comprehensive Cancer Center
We are delighted to note that a distinguished member of our Medical Advisory and Editorial Board, Raphael E. Pollock, MD, PhD, will be joining the Ohio State Comprehensive Cancer Center in September. Dr. Pollock, a surgeon with a lifetime of experience in sarcoma care and research, will become the chief of surgical services at Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute (OSUCCC–James). He will also be a professor and the director of the division of surgical oncology at the Ohio State University Wexner Medical Center College of Medicine’s department of surgery.
Dr. Pollock plans to expand the sarcoma program at OSUCCC–James and to train residents and fellows in sarcoma treatment. He will also continue as the lead investigator of research that was awarded an $11.5 million SPORE grant from the National Cancer Institute last year. We wish him well in this new and exciting position. Read more in the official announcement from OSUCC-James.
An Opportunity for Patients to Accelerate LMS Research
The LeioMyoSarcoma Direct Research Foundation is reaching out to the patient community to collect tissue samples for vital LMS research. This is the second tissue drive that LMSDR has conducted, and it provides a unique opportunity for LMS patients to create a resource of immense value. The resulting tissue bank will allow investigators around the world to access enough tissue to conduct promising research.
The Initiative encourages everyone who has been diagnosed with LMS to consider participating in this project. Learn more about sending your tissue sample.
Helping Children's Handle Cancer
A recent study shows how parents and hospital staff can help children to use role play, collaborative storytelling, humor, and prayer to improve their experience during medical interventions. Many parents with children who have cancer will be encouraged by this study and may learn some simple techniques that reduce suffering and improve their children's quality of life. Read more.
The Financial Toxicity of Cancer Treatment
The conclusion of this article will be of interest to many sarcoma patients and practitioners:
Insured patients undergoing cancer treatment and seeking copayment assistance experience a considerable subjective financial burden. They may exhaust their savings, take on excessive debt, and face choices between health care and other basic necessities to save money. Insured patients who did not apply for copayment assistance also faced financial hardship, suggesting that those applying for financial assistance represent the tip of the iceberg of patients with financial difficulties. Financial distress or “financial toxicity” as a result of disease or treatment decisions might be considered analogous to physical toxicity and might be considered a relevant variable in guiding cancer management. Understanding how and among whom to best measure financial distress is critical to the design of future interventional studies.
This pilot study is the first to assess financial distress among insured patients applying for copay assistance. Our data suggest that copayment assistance applicants are enriched for, but not the exclusive bearers of, financial distress. These data also confirm the feasibility of measuring financial distress among copayment assistance applicants, with potential relevance to fields outside oncology. These data will support the design of a study assessing the differential impact of financial distress on treatment-related decision making throughout the continuum of cancer care.
Patient Feedback Requested:
Osteosarcoma Surgical Choices and Results
Dr. Eric Henderson of Dartmouth-Hitchcock Medical Center is seeking input from osteosarcoma patients and their families as he studies surgical choices and outcomes. If you are willing to help shape this research, please send an e-mail to JC that includes the following information:
- Are you the patient/survivor or parent?
- What was the age of the patient when diagnosed?
- Where was the tumor located?
- What was the ultimate surgical choice?
- Before surgery, what questions can a physician ask a patient in order to learn about that patient's life and to present surgical options based on the patient's lifestyle and needs?
- Before surgery, what do you wish you had known about other patients who previously had a surgery similar to yours?
- What functional issues do you think are most important for patients who have a a tumor in the same location as yours?
V10N2 ESUN Copyright © 2013 Liddy Shriver Sarcoma Initiative.
Dan’s House - A "Home Away From Home"
Most of us are touched by cancer at some point in our lives, either directly or through a family member or close friend. However, it’s usually with adults and elderly family members (older parents or grandparents) where we’re most familiar with cancer. The average age of a woman with breast cancer is 61 and a man with prostate cancer is 67. The incidence rate of these cancers is very high. For instance, each year a ¼ million women (and men) get breast cancer.
On the other end of the spectrum, how can our hearts not be touched by pictures of little ones fighting cancer? Parents devote their lives to nurturing and protecting their children, and it’s devastating when cancer reminds us that there are some things we can't control. In 2007, ten thousand four hundred children under the age of 15 had cancer, with the most prevalent being leukemia.
However, there’s another age demographic that we rarely hear about with cancer, an age group that is "stuck in the middle." They are stuck, not because they don’t get cancer, but because there hasn't been a focus on their age group until recently. And they are usually force-fit into the pediatric or older adult world of oncology, neither of which is right for them. Each year, more than 72,000 Adolescent & Young Adults (AYAs - defined as ages 15 to 39) will have cancer. There are 20,000 new AYA cases diagnosed each year, twice as many as in the pediatric world.
My son, Dan, was one of those AYAs. He was diagnosed with osteosarcoma at age 17 in the summer of 2006 before his senior year of high school. Dan’s treatment schedule was grueling and initially successful, but a local recurrence and lung metastasis led his local medical team to deem him incurable early in 2008. But Dan wasn’t ready to give up, and we spent months living in hotels and apartments as he obtained expert care, far from home, at Houston’s MD Anderson Cancer Center. While MDACC gave Dan hope and a unique perspective on life, there was no stopping this monster, and Dan spent the last three months of his life in the Philippines receiving a trial drug that, although made in the US, was only available in Manila because all US trials were closed.
During these trips, literally around the world, Dan experienced isolation and separation from family and friends. While all of his friends went on with their lives – to school, jobs, relationships, and fun on Saturday nights – Dan was stuck in his medical world and longed for a return to a life of normalcy. Dan and his mom started to brainstorm about a place where others in his age group fighting cancer could gather together, to support each other, to create a sense of community and try and regain a little bit of that normalcy.
This was the genesis of what has become known as Dan’s House of Hope (DHOH). Through supportive programming and housing targeted to AYAs, we strive to give a little bit of "normal" back to AYAs dealing with cancer. While fine organizations like Ronald McDonald House provide needed housing for youngsters, once an AYA turns 19, with few exceptions, they can no longer take advantage of RMH. DHOH will go above and beyond to fill that gap - providing programming such as organized events and outings, guest speakers, music and art sessions, shopping, or just a chance to "hang out." More than just housing, DHOH will be a home away from home.
Our mission:
Dan's House of Hope, Inc. is a nonprofit corporation dedicated to reducing the financial burden of young adult cancer patients and their families who must travel lengthy distances from home to receive medical treatment. Dan's House of Hope is committed to providing comfortable, affordable, temporary accommodations and sense of community that promote healing in a supportive, hope-filled, home away from home environment.
We are founded on 4 pillars:
- Education & Awareness: Through community events, many of which are sponsored by students at the high school and college level, we are alerting AYAs to watch out for the warning signs of cancer and to be their own advocates. One in every 168 Americans aged 15 to 30 develops cancer. While pediatric and older adult cancer survivability rates are improving, they have been stagnant for the past 20 years for AYAs, typically due to delayed diagnosis by primary care physicians, as cancer isn’t expected in this age group. AYAs are the most under or uninsured age group, and coupled with a sense of invulnerability, this leads to delayed care, diagnosis and ultimately a poorer prognosis. Seventy-two thousand (72,000) AYAs will have cancer this year; we intend to improve these numbers through increased education of AYAs and caregivers.
- Fundraising: Dollars raised allow DHOH to focus on providing tangible benefit now – through printing of literature, programming related expenses, etc. Programming is a critical component of our awareness message, and fundraising supports those efforts. DHOH also has temporary housing available in Houston, but our longer range goal is to build facilities dedicated to the unique needs of AYAs near major cancer centers around the country. While most gifts received are general operating funds, we have received large gifts that are restricted – for instance, from Houston, for a building in Houston. A capital campaign later this year will focus on the bricks and mortar, and we are hoping to break ground late next year.
Recent fundraisers have been tied together with Education & Awareness events. Most recently, a high school student organized a jazz concert with school bands that raised thousands of dollars and gave us the opportunity to present the somber statistics of AYA cancer. And of course, an Annual Campaign is a critical element to our ongoing mission.
- Housing: When our son Dan’s doctors in Wisconsin ran out of options, Dan wasn’t ready to quit. Research took us to the best cancer care treatment center in the country (according to US News & World Report), MD Anderson Cancer Center (MDACC) in Houston. In the waiting room at MDACC one day in 2009, Dan met Michael and Rick – these three young men lived 30 minutes from each other in Wisconsin yet never met until in Houston for treatments. We knew the need was great in Houston, and that little story and a needs assessment proved it. At MDACC alone (one of several superior cancer centers in what is known at the Texas Medical Center south of downtown Houston) it is expected that 7,800 AYAs will be treated for cancer multiple times in 2013. A quarter of those come from more than 100 miles from Houston, and another quarter of those come from outside the state or outside the country. We are in the early stages of organizing ourselves for needs assessments near other major cancer centers in New York, Los Angeles, Seattle and elsewhere. However, our initial focus is on Houston.
As an interim step while new building plans take shape, we are planning on making apartment space available to AYAs in the summer of 2012.
- Travel In Peace (TIPS): Whether through direct financial assistance or aligning patients with existing resources, DHOH will help patients get where they need to be for the best care – regardless of where that is in the country.
We have had many terrific individuals from around the country step forward to help us in our mission. Most recently, the Executive VP and CFO from a major Houston energy company volunteered to fund programming and to sponsor several AYAs on trips to speak at major conferences. Our volunteer base for our golf outings and other events has been strong, and the list of those wanting to help at the first and future house continues to grow.
Just recently, we were contacted by the advocate for a 20-year-old woman from Georgia. She has been fighting osteosarcoma for years, and recently had a relapse that has put her life in peril. She will be traveling to Houston in the coming days for care, and she is exactly the type of person that DHOH could benefit by providing a support group and safe housing in a foreign (but welcoming) city. She recently posted the following on her blog:
You’ve probably heard the saying, "The Journey is the destination." I absolutely love that saying, because it so beautifully depicts how we should go about living life. For the sake of brutal honesty, I may not make it through this battle. That’s actually a very good possibility. But guess what. The destination is not what matters- it’s how richly lived and loved the journey was, and God knows I have had one of the best journey’s I could ever, ever hope for. THAT is where I find peace with this.
For this young lady, and for the many whom we know will follow her, our pledge is to do what we can to ensure enjoyment of the journey. Until important research, such as that funded by the Liddy Shriver Sarcoma Initiative, puts us out of business, our passion of supporting AYAs will continue. If you’d like to join us, please visit our website or contact us.
V9N3 ESUN Copyright © 2012 Liddy Shriver Sarcoma Initiative.
Dealing with a Life-Changing Diagnosis
The following papers and guidelines will be of interest to many who deal with the life-changing effects of a sarcoma diagnosis.
What Happens Now? Care for Cancer Survivors After Treatment
The growing population of adults living with a history of cancer in the United States mandates attention to quality of life and health in this group, as well as to the implementation of evidence-based interventions to address psychosocial and physical concerns at completion of medical treatments and beyond. The goals of this article are to document the need for attention to psychosocial domains during the re-entry and later phases of the cancer survivor trajectory, offer an overview of current evidence on efficacy of psychosocial interventions during those phases, and offer suggestions for application and research regarding post-treatment psychosocial care.
Psychosocial Care of Adolescent and Young Adults with Cancer
The delivery of quality care for adolescent and young adult (AYA) patients with cancer and survivors requires an understanding of the unique qualities of this group—the shared norms, attitudes, and beliefs that determine their behavior as well as the unique stresses they face on a day-to-day basis. All AYAs have typical concerns about being comfortable with who they are and who they want to become (identity development, including sexual identity), their bodies (body image), initiating intimate and emotional relationships, separating from parents, and making independent decisions about future goals such as career, higher education, and/or family (autonomy). Yet efforts of AYA patients with cancer and survivors to mature are often confounded by restrictions and limitations placed on them by their disease and treatment. This article promotes understanding of psychosocial challenges faced by AYAs when diagnosed with and treated for cancer. It reviews evidence-based psychosocial support interventions for AYAs with cancer and other life-threatening or chronic diseases, particularly the positive effects of peer support, technology-based interventions, and skill-based interventions. The article concludes with recommendations for clinical care that are intended to promote the ability of AYAs to cope with cancer.
NCCN Guidelines for Adolescent and Young Adult (AYA) Oncology
The National Comprehensive Cancer Network® (NCCN®) has issued new NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) for Adolescent and Young Adult (AYA) Oncology. AYA patients are defined in the guidelines as individuals 15 to 39 years of age at initial cancer diagnosis. The guidelines address the critical issues that AYA patients with cancer and their caregivers encounter at diagnosis, during treatment, and after therapy. A free account/login at the NCCN website is required to see the practice guidelines.
Guidance on Genetic Testing and Sharing Genetic Information
Sarcoma patients and caregivers might be interested in this report from the Royal College of Physicians in the United Kingdom which aims to provide up-to-date guidance on issues of consent and confidentiality arising in clinical genetic practice. The first version of this guidance was aimed specifically at professionals within the specialty of clinical genetics and was partly prompted by proposed legislative changes such as those governing the use of human tissue. This new report recognizes that many of these issues are becoming increasingly relevant for all medical specialties as clinical genetic practice branches out into mainstream medicine, and outlines relevant changes in legislation in the UK and professional guidelines. The main section of the report introduces general principles of consent and confidentiality in clinical genetic practice and expands on these using clinical case scenarios as illustrations. This section explores the issues involved in taking a family history and in the giving and sharing of genetic information and samples. The appendices outline and examine relevant recent changes in legislation in the UK. The guidance also takes account of the revised General Medical Council (GMC) guidance on consent and confidentiality and the House of Lords Science and Technology Committee Inquiry on Genomic Medicine (2009). Throughout this document, the underlying ethical and legal principles are illustrated using hypothetical (but based on real) clinical cases to highlight key points. Each case should be judged on its own facts, as the clinical scenarios are intended to guide rather than dictate practice.
Guide for Patients with Advanced Cancer
In a partnering of oncologists, patients and patient advocacy groups, the European Society for Medical Oncology European Society for Medical Oncology (ESMO) has produced a booklet called: A guide for patients with advanced cancer, how to get the most out of your oncologist. The booklet is designed to help patients with advanced cancer and their treating oncologists.
For patients and their family members, it provides practical advice regarding cancer care, communicating with oncologists, important questions to ask, getting information and the challenges of living with an advanced cancer.
For practicing oncologists, the guide will serve as a tool to help focus important discussions with their patients and to assist in addressing the many issues their patients are confronting.
Help for Those seeking Pediatric Proton Therapy
Many treatment protocols for pediatric sarcomas include a significant phase of radiation treatment. There are advantages of proton therapy for pediatric patients as compared to traditional radiation or even Intensity-Modulated Radiation Therapy (IMRT). Children’s bodies are still growing and developing making children more susceptible to radiation-induced damage to healthy tissues and organs. Protons are physically superior to traditional radiation and can offer the pediatric patient greater accuracy in targeting the tumor – within 1 millimeter. Protons have no exit dose as their depth is controlled.
Recent studies have shown excellent results with protons in controlling aggressive tumors such as sarcomas, and also reducing damage to healthy tissues. With less radiation to the child’s body, protons lower the risk for developing secondary tumors later in life. There are also fewer side effects from this type of treatment as most children are simultaneously undergoing chemotherapy.
Part of the reason so few sarcoma pediatric patients receive proton therapy is the lack of knowledge and information. The Pediatric Proton Foundation is designed to help families, at any stage of treatment, make those quick unexpected decisions of what to do when faced with childhood cancer. Susan Ralston, Executive Director of the Foundation, said, "We help families gain access to protons." We encourage you to contact her for information about the Foundation’s services.
February 2011
New opportunity to participate in genetic research for chordoma
by Josh Sommer of the Chordoma Foundation
Since 1996 researchers at the Genetic Epidemiology Branch (GEB) of the National Cancer Institute (NCI) have been studying families with multiple members affected by chordoma in order to identify genes responsible or causing chordoma. Last year researchers at GEB and Duke University discovered that chordoma in four families was caused by one extra inherited copy of a gene called brachyury. However, several additional families in the NCI study had no abnormalities in the brachyury gene, suggesting that additional genes could be responsible for causing familial chordoma.
GEB researchers are looking for more chordoma families to participate in research on familial chordoma. The goal of the research is to identify other genes that increase the risk of family members developing chordoma. GEB researchers are also looking for people who are the ONLY person in their family who has ever been diagnosed with chordoma to participate in research on sporadic chordoma (also called non-familial chordoma). One goal of this research is to find out whether genes for "familial chordoma" play a role in causing chordoma to develop in people without a family history of this cancer. To answer this question, GEB has opened a new study for sporadic chordoma patients, which aims to recruit at least 100 participants.
Patients with familial chordoma, or sporadic (non-familial) chordoma, or close relatives who wish to inquire about participating in this study should contact Ms. Stephanie Steinbart at 1-800-518-8474. More information is also available on the GEB chordoma research webpage.
Synovial Sarcoma Survivors
by Sarah Ann Cuy
I am one of the moderators of an online patient community that provides support for people living with synovial sarcoma, as well as survivors and families affected by synovial sarcoma. Being a patient of a serious disease is difficult enough; being a patient of a rare disease adds loneliness to the situation. These patients desperately need to connect with others like them, and that's where our patient community comes in. Members of our patient community provide support to each other during the most difficult of times. Our community has helped many members connect, but since there are millions more to reach around the world, we need your help to spread the word. How can you help these patients in need?
The International Sarcoma Symposium
The Liddy Shriver Sarcoma Initiative was pleased to participate in the International Sarcoma Symposium held on February 4, 2011, in Oslo, Norway. Dr. Ola Myklebost and Bruce Shriver gave the opening remarks, which can be viewed online (the video takes a moment to load). Presentations by physicians and researchers are also available online.
V8N1 ESUN Copyright © 2011 Liddy Shriver Sarcoma Initiative.
October 2010
An Update from the QuadW Foundation
In 2006, the WWWW Foundation, Inc. (QuadW) was created when we lost our son, brother and dear friend, Willie Tichenor, to osteosarcoma. Our board is comprised of Willie’s parents, brother, seven of his closest friends and one of his doctors
Our largest grant ($643,000) has been in partnership with CureSearch, the foundation affiliate of the Children’s Oncology Group, to create the QuadW Osteosarcoma Bisostatistics and Annotation Office (QuadW OBAO). This project provides infrastructure for the collection and storage of osteosarcoma patient samples by providing personnel support and resources devoted to sample annotation, patient follow-up, and biostatistics.
Dr. Chand Khanna, National Cancer Institute Center for Cancer Research Senior Scientist and QuadW OBAO project manager, noted, "Most noteworthy of the ongoing accomplishments of the QuadW OBAO was the recent announcement at the Children’s Oncology Group Fall 2010 Meeting, that the clinical annotation of the osteosarcoma biospecimen repository had been taken from less than 5% complete to over 90% complete. This accomplishment has markedly enhanced the value of the biospecimen repository. The immediate impact includes the opportunity to complete pending statistical analysis for 14 osteosarcoma biology studies that have in some cases were halted over 5 years ago due to insufficient clinical annotation of the banked materials."
"A second and similarly important advance supported by the QuadW OBAO has been the restructuring of the previously antiquated, inefficient, and slow process of requesting tissues from the osteosarcoma biospecimen repository. On April 27, 2009 the QuadW OBAO in collaboration with the intramural NCI’s Center for Cancer Research released a web-based solution. Through this web-enabled portal, investigators interested in the study of osteosarcoma have been able to request samples in support of hypothesis driven research in studies. This system provides efficient review of requests, statistical analysis for feasibility, and reporting of results to investigators."
Left: QuadW board members visiting with COG chair Dr. Greg Reamon and chair-elect.
Right: Dr. Peter Adamson at the September COG meeting.
We at QuadW are very hopeful that efforts of all those associated with the QuadW Osteosarcoma Bisostatistics and Annotation Office will translate into a better understanding of osteosarcoma, resulting in more therapeutic options and improved outcomes for patients. We also look forward to extending this model to other sarcoma disease groups that would benefit from this type of support.
V7N5 ESUN Copyright © 2010 Liddy Shriver Sarcoma Initiative.
August 2010
GIST Summit to be Held
GIST Support International, in collaboration with Dr. Jon Trent, would like to extend an open invitation to the 2nd GIST Summit at M.D. Anderson Cancer Center to be held on September 25th. It will be a full day, beginning at 8:00am with a GIST 101 pre-session. Talks on all aspects of GIST treatment and disease management follow throughout the day, until the final talk about future treatment directions which ends at 5:00pm.
The summit will build on last year's success, when there were more than 100 participants from all over the United States. Everyone with an interest in GIST is welcome to come. Lunch and refreshments will be provided, and there is no charge to attend. For more information and to pre-register, see the GIST Summit web page, or contact Barbara.
V7N4 ESUN Copyright © 2010 Liddy Shriver Sarcoma Initiative.
April 2010
The Team Sarcoma Everyday Heroes Competition
Everyone who has dealt with sarcoma knows a hero or two. Heroes support, encourage and inspire us in extraordinary ways. Just when we need them most, they are there. They challenge us, comfort us, and give us hope.
The Team Sarcoma Everyday Heroes competition invites you to tell us about your hero. Entries will be published at the Team Sarcoma website, and three winning submissions will be chosen. A donation will be made to sarcoma research in honor of each winner's hero, and each winner will choose which type of research their prize will fund.
Please spread the word about this competition within the sarcoma community. The deadline for submissions is June 1, and everyone who has been touched by sarcoma is invited to participate.
The Wendy Walk
The Wendy Walk to fund sarcoma research will be held in Los Angeles, New York, and Miami on April 18, 2010. The walks were created and organized by Ali, Matt and Jackie Landes, to support their mom who has liposarcoma. She is currently undergoing treatment as part of a clinical trial.
V7N2 ESUN Copyright © 2010 Liddy Shriver Sarcoma Initiative.
December 2009
New Book to Benefit the Liddy Shriver Sarcoma Initiative
by Mary Sorens
Scott Alcott, a Ewing's sarcoma survivor, published I'm Not Lance! this month. In a surprising announcement, he pledged to donate all of the book's proceeds to the Liddy Shriver Sarcoma Initiative. When we heard this exciting news, we set out to learn more about Scott's journey and his new book.
At the age of 40, Scott was diagnosed with an unusual case of Ewing's sarcoma. He explained: "Ewing's normally hits younger people of course, but mine was strange for 3 other reasons: there was no bone involvement (soft tissue only); the tumor was in the deep tissue of my face (head and neck Ewing's is rare); and the tumor had none of the known gene translocations."
Mary: Why did you write I'm Not Lance! ?
Scott: "People kept sending me Lance Armstrong's book for inspiration, and I found it hard to relate to. Lance's endurance, discipline, and competitive spirit is legendary and hard to emulate; I wanted to write a book for regular people."
Mary: So...is this a book about your cancer journey?
Scott: "I'm Not Lance! is not an autobiography. It has many moments of controversy and sometimes blunt assessments. I've dared to say what patients, supporters, and doctors actually think, with an eye on raising understanding and better dynamics between these wonderful and caring people."
Mary: What do you hope readers will gain from the book?
Scott: "I hope this book can make others feel better understood, supported and tooled for the fight. I'm Not Lance! is for patients and their supporters; it gives a tour of the practical, social, and psychological challenges facing all members in our community and tips for how to manage those challenges."
Mary: Why did you choose to give the book's proceeds to the Liddy Shriver Sarcoma Initiative?
Scott: "When I was scared, overwhelmed and confused, I found an amazing group of people supporting each other at the e-sarc Yahoo user group. Bruce Shriver, Mimi Olsson, and scores of others welcomed me in and helped me until I was able to begin helping others. Liddy and her family seem to infect others with positive values and that impressed me."
Scott Alcott's book, I'm Not Lance!, is available in paperback and digital download and will soon be listed on Amazon.com.
"Team Bob" Competes in the Inaugural Las Vegas Rock and Roll Half Marathon
The "Team Bob" challenge effort, took place on Sunday, Dec 6th. Seven people raced in the Inaugural Las Vegas Rock and Roll Half Marathon (13.1 miles). The race course was done up in grand Vegas style. There were running "Elvi", fireworks, run through weddings, skydivers... even caged white Bengal tigers at the start line.
Team Bob wore Team Sarcoma shirts and "Sarcoma Knows No Borders" wristbands all over town. During the race, a team member was approached by a girl named Kim. Her 29 year old boyfriend was recently diagnosed with a sarcoma in his foot. She tearfully confided their devastation and bewilderment as to what to do next. She was thrilled to find someone else who had heard of sarcoma.
The Team had a terrific experience to aid a deserving charity.
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V6N6 ESUN Copyright © 2009 Liddy Shriver Sarcoma Initiative.