Wanted: Musicians who have had Breast Cancer

[Schmalenberger]

Sarah Schmalenberger, hornist and musicologist (Member, Local 30-73) is launching a national study to examine the physical and occupational well-being of women musicians who have had breast cancer. The study has been designed to develop a profile of how the diagnosis and treatment of the disease affect women musicians. In addition to the emotional impact of being diagnosed with breast cancer, the physical problems that follow recovery from breast cancer treatment can be particularly burdensome to patients who are musicians, because of their physically demanding occupations or avocations. However, scientific research on the number of women musicians diagnosed with breast cancer and the medical and occupational well-being of musicians after breast cancer is essentially nonexistent.
Schmalenberger, herself a survivor of breast cancer who has struggled with chronic pain from multiple surgeries, has assembled an investigative team of researchers to conduct this study, beginning in September with a web-based survey that musicians who have had breast cancer can take online. Toward that end, she invites all musicians who have had breast cancer to enroll in the study, and she invites anyone who knows such a "survivor" to encourage them to enroll in the study. Anonymity will be guaranteed, and no names will be recorded. Schmalenberger anticipates that the findings from this study will provide a solid basis for further examination of the impact of breast cancer not only on musicians, but also on those in other fields where physical fitness, strength, and stamina are vital to occupational and general well-being.
For more information, you may contact Sarah at scschmalenbe@stthomas.edu

[Schmalenberger]

The website address for the cancer study - http://www.musiciansurvivor.org is still under construction, but it will include an online survey for participants to take.

[Schmalenberger]

http://www.musiciansurvivor.org is now accessible! The site contains a link to a survey that women musicians who have been treated for breast cancer can take online. It takes between 10-20 minutes to complete, depending on whether you add optional comments.
Although the primary data collected will be for women treated within 1-5 years with no recurrance, we welcome contributions from those who fall outside these criteria. The survey begins with initial questions to determine full eligibility to participate; those who are not eligible will be "jumped" to the survey end where they can write about their experience with breast cancer in the essay box. These stories will help us with later phases of the study, in designing interview questions and hypotheses for additional inquiry.

[Schmalenberger]

Six weeks now since www.musiciansurvivor went online...and 120 musician survivors of breast cancer have logged on to the online survey to contribute to the Life and Livelihood Study. Several have contacted me to share additional details of their experience with breast cancer. All may contribute to the study in some capacity, whether to write a brief narrative about their experience or whether to take the full survey that polls those whose primary treatment (e.g., surgery, reconstruction, chemo, radiation) ended between 1-5 years. We need 200 in this "full survey" group to complete this first step, or Phase One. Of the 120 who have contributed, 40 completed the full survey and 30 completed the brief narrative. THANK YOU SO MUCH FOR YOUR CONTRIBUTIONS!
Phase Two of the study will consist of about 30 telephone interviews with those who volunteered after taking the full survey to be interviewed. We hope to start these in January. The online survey will stay active though, possibly through Sept. 2008.
During this startup phase I have learned of survivors in Phoenix, Chicago, and New York state who have organized ensembles and concerts to both bond together as survivors making music and to raise funds. I can only hope that these groups reflect our music community overall, that there are other music survivor groups!
Wishing you all good health and happiness as musicians. And please keep telling others about the study!

[Schmalenberger]

I have had emails from people about who can participate in the breast cancer study online at musiciansurvivor.org. The survey is set up to allow survivors who completed treatment (surgeries, chemo, radiation, reconstruction, etc) within 1-5 years with no recurrence to take the full survey. Don't count taking Tamoxifen or Arimidex/Femara as treatment. Those who do not qualify to take the full survey (including men) can still contribute by sharing their story of how breast cancer affected their music career - the survey will simply jump to this question. We are also interested in hearing from anyone whose music career ended due to breast cancer. THANKS to Polyphonic for posting these announcements, it has brought many people to the study site!

[Schmalenberger]

The Life and Livelihood Study needs your help! Encourage women musicians who have had breast cancer to contribute their experience at http://musiciansurvivor.org. This site features an online survey designed to collect data on how treatments for breast cancer affects music making. All contributions welcome and collected anonymously; depending on length of survivorship, the survey takes 5-20 minutes to complete. Thanks to all who have participated already, we'd like to hear from more of you!

[Schmalenberger]

The Life and Livelihood Study on the occupational and medical well-being of women musicians after breast cancer continues to welcome participants to take an online survey. Women treated between 1-5 years can take an anonymous survey at musiciansurvivor.org. We are also beginning to conduct telephone interviews with those who have completed the survey who also volunteer to be interviewed. The preliminary data from the survey so far is very compelling, and we are sharing preliminary statistics at a national conference of the National Consortium of Breast Centers. Sarah Schmalenberger, hornist and Principal Investigator of the study, has published an essay about the topic of women musicians' health after breast cancer, soon accessible at the Review for Disability Studies International
Please continue to encourage musician survivors of breast cancer to share their experience at the study site, musiciansurvivor.org. Thanks to all who have participated and encouraged participants so far

[Schmalenberger]

My essay explaining the need for research on how breast cancer affects musicians appears in the most recent issue of the Review of Disability Studies. The essay, entitled "Life and Livelihood: Musicians Coping With Breast Cancer" is part of a double issue on musicians. You can read the essay online (p. 42) at the website http://www.rds.hawaii.edu/

[Schmalenberger]

The Life and Livelihood Study is still seeking participants to take the online survey at musiciansurvivor.org. We are now also conducting telephone interviews with survey participants who volunteered to talk to us. It will take about a year to sift through all the rich data and write an "official" report about our findings; however I can unofficially comment that the musicians who have taken time to share their breast cancer experience are truly remarkable people. Musicians are creative, resilient folk, and cancer seems to have offered many a new challenge to overcome with all the skills that we possess as artists!

[Schmalenberger]

The Life and Livelihood Study is going really well, thanks to all who have logged on to musiciansurvivor.org to take the survey or passed along the word to survivors. I am impressed at the creative responses so many women have brought to their breast cancer experiences - new repertoire, new gigs, newfound love for music. Amazing.
Within a year, it would be wonderful to have a conference of musicians who have survived life-threatening illnesses like breast cancer. Any ideas or thoughts for this would be most appreciated

[Schmalenberger]

Any female musician who wishes to share her breast cancer experience at musiciansurvivor.org can do so anonymously. Those who volunteer to share more extensive details through a telephone interview will have to disclose their name, email, and telephone number; however, this contact information will be destroyed and no one's real name will be used in published articles about the study.
Although all are encouraged to share their experience, women who finished treatment between 1-5 years with no recurrence will be eligible to do the full 20-minute survey. Others will be eligible to contribute in a more open-ended fashion of sharing their experience at the end of the survey - this data will go into its own article addressing long term, male, and recurrent experiences.

[Schmalenberger]

For those of you who receive the musician's union mag, look for an article in the October 2008 issue about the ongoing study on women musicians and breast cancer. I got a chance to talk about how the research is going, where it's headed, etc.

[thomspeter@hotma]

Choosing which kind of treatment is right for you may be hard. If you have breast cancer, be sure to talk to your doctor about the treatment options available for your type and stage of cancer. Breast Cancer Treatment (http://bodyhealthdebate.co.uk/)Doctors can explain the risks and benefits of each treatment and their side effects.

Sometimes people get an opinion from more than one breast cancer doctor. This is called a "second opinion." Getting a second opinion may help you choose the treatment option that is right for you.bodyhealthdebate.co.uk (http://bodyhealthdebate.co.uk/)

[Schmalenberger]

Good point about careful planning! In many situations, that our research is now showing, there is a balance of trying to first save your life and then save your livelihood. The second part is tricky, as many musicians have reported that they are unable to find a doctor knowledgeble enough about "what musicians do" to advise them on best practices during and after treatment. But there are a few musician who have persisted in finding ways to heal themselves when unexpected side effects occur (and the data is showing lots of these instances).

[Schmalenberger]

The Life and Livelihood Study on the effects of breast cancer in women musicians is nearing its second year of data collection. Over 300 musicians from across the country have logged onto the survey site www.musiciansurvivor.org. Nearly 100 of these were eligible to complete the full survey, and over 80 contributed equally rich information at the end of the survey (To be eligible for the full survey, you must have completed your primary surgical/chemo/radiation treatment in the US 1-5 years ago, with no recurrence. If you are not eligible to take the full survey, you still can contribute your experience at the end of the survey). The online survey will remain open until September 2009.
In addition to survey data on physical effects of breast cancer treatments, we have conducted 30 telephone interviews (20 more pending) with musicians who volunteered to provide more information. I have presented our preliminary results at four conferences, in the USA and the UK, and the response has been overwhelmingly positive and encouraging.

[Schmalenberger]

Our study data so far --- mind you, we are still sifting through it all --- is validating our hypothesis that repeated traumas to the torso affects the occupational well-being of musicians. Study participants also reported ongoing effects of chemotherapy and radiation as interfering with their music making.
More important, we are seeing a high level of frustration with the medical system. On one hand, participants felt confident that their doctors could cure their breast cancers. On the other, participants often felt misunderstood as they tried to articulate their particular needs and concerns as "athletes in music."
The stories that musicians have shared with us through the study reveal a strong common theme of resilience. Many sustained profound physical changes. But rather than give in or up, they forged creative solutions: New performing outlets. New repertoire. New therapies for restoring their physical, mental, and emotional selves. Ultimately, it seems for many that their music enabled hem to "give voice" to the experience in ways they could not have imagined.
Feel free to contact me for more information scschmalenbe@stthomas.edu

[ward21]

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[Schmalenberger]

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