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Tag Archives: aya

#YARally with Stephanie Madsen

StephanieMadsenRecent

Cancer Knowledge Network and Stephanie Madsen team up for Young Adult cancer patients and their cancer teams.

 

“It is my goal that by partnering with CKN, our voices will be heard where often they are overlooked. I invite you to join me in the movement to shine the spotlight on our generation as we face challenges many simply do not face. Cancer doesn’t define your life, and I hope to rally beside the men and women of my generation to help pave the way for improved care and heightened awareness.” – Stephanie Madsen

 

 

Cancer Knowledge Network (CKN) is launching a social media campaign to come alongside the YA generation to help alleviate the fear and stress that many experience. CKN believes in standing beside those who have received a cancer diagnosis by offering readers a tangible and practical way of living with cancer. Whether viewers are newly diagnosed, long term survivors, caregivers, or oncology professionals, CKN provides the navigation system through which they can find their way. By providing abundant resources that address all aspects of cancer, it is our goal to empower those facing this diagnosis with the knowledge, wisdom, and inspiration to fight.

 

Through this campaign, CKN has partnered with a recognized voice in the young adult cancer community. Stephanie Madsen is a writer and motivational speaker. Diagnosed with a rare cancer as a newlywed in her mid-twenties, Stephanie is a four-time survivor. Having undergone 55 chemotherapy treatments, 30 radiation therapy treatments, and four major surgeries, her experiences have allowed her to provide a unique and relatable perspective to those facing similar life challenges. Given a less than 20% chance of surviving one year from diagnosis, she is now celebrating being cancer-free.

 

Stephanie’s blog, DerailingMyDiagnosis.com, has emerged as a beacon of hope in the worldwide cancer survivorship community. Stephanie candidly shares the highs and lows of her journey with hundreds of thousands of visitors, all the while maintaining the survivor spirit and unshakeable faith needed to thrive in an otherwise hopeless situation. Her written work has been featured on The Huffington Post, Everyday Health, Coping With Cancer, and Livestrong, and she has appeared on numerous local television and radio broadcasts as well as the Ellen DeGeneres Show. She shares her experiences with others and speaks hope at survivorship events across the world. Stephanie lives in Denver, Colorado with her husband and two dogs.

 

Together, it is CKN and Stephanie’s goal to bridge the gap between young adult cancer patients and oncology physicians. Our mission is to make the voices of young adults with cancer heard so that improvements can be made and standardized within the greater healthcare community. In this social media campaign, Stephanie will be sharing personal accounts of her journey fighting this disease and the experiences she faces as a young adult living with cancer. She is passionate about inspiring others to live life intentionally, to be proactive about their healthcare, and to speak to physicians about what it’s like having cancer as a young adult.
Each month, Stephanie will write an article pertaining to a specific topic. These topics may include but are not limited to fertility, dating and relationships, body image, and finances. In addition, several Twitter chats will be held in order to establish ongoing conversation within the cancer community. Through this campaign, Stephanie and CKN hope to unite young adults affected by this disease.  Our aim is to establish a consistent relationship between patient and physician, so that treatment options can be approached with a team effort.

 


 

Please join us as we seek to provide YAs with the knowledge they need to regain control of their lives through heightened awareness about issues such as finances, fertility, body image, dating and relationships, and more. Follow us on twitter using the hashtag #YARally.

We need your help to spread the word about #YARally to your communities. Your feedback will be presented to major oncology groups who are studying YA issues. It is our hope that your comments will equip these researchers with better insight so they can improve best practices and standards of care for YA patients.

 


 

 

Canadian Task Force on Adolescents and Young Adults (AYA) with Cancer

CdnTaskForceMission Statement:  To mitigate the current disparities of care for AYA with cancer and survivors of cancer in childhood through advances in treatment and research, respecting the unique circumstances and needs of this population, enacted across all health care jurisdictions in Canada.

 

The Task Force was established in 2008 with the support of the Canadian Partnership Against Cancer and C17, the consortium of Canadian pediatric oncology programs. AYA with cancer have unique needs related to their maturational development and the biology of their diseases. Deficiencies in the care provided by the pediatric and adult cancer care systems result in long-term adverse health and social consequences, an increased burden on the healthcare system, an overall loss of productivity and a drain on health resources and the economy. Task Force members are from all parts of Canada, and represent all stakeholder groups including survivors, health care practitioners, administrators, and policy-makers.  In 2011 the Task Force published broad principles and recommendations for the provision of health care in Canada for adolescent and young adult-aged cancer patients and survivors.  The six broad recommendations highlight the need for age-appropriate psychosocial, survivorship, palliative, and medical care as well as research to redress inequities in the care provided to this group relative to both younger and older cancer patients.  Task Force Working Groups are currently preparing guidance for active care, guidelines for follow-up care, recommendations on how to increase accrual to clinical trials, and an AYA-specific distress-screening tool. Improved care for this group will enable individuals to reach their full potential as productive, functioning members of society, providing economic and other societal benefits.

www.ayacancercanada.ca
@AYACancerAlly

 


 

A note from Lorne Cooper, Founder Current Oncology; Cancer Knowledge Network, Founder/CEO Multimed Inc.

As a member of the Oncofertility Working Group, we collectively strive to improve the quality of life for AYAs living with cancer, and fertility preservation is a crucial issue for this age group.  Through our Oncofertility Referral  Network, CKN has proven to be the leader in the Canadian cancer community allowing instant online referrals to local fertility clinics, as well as providing a library of resources to oncologists and patients.  I would like to share with you the Oncofertility Working Group’s power point presentation on fertility preservation in adults with cancer.

View the Powerpoint Presentation:  Fertility Preservation in Adults with Cancer

 


 

Related Content:  Importance of Adolescent and Young Adult Oncology and a Focus on Fertility Preservation

 


 

 

End of Life Support for AYAs with Cancer

AYAHow can we respectfully make our child feel independent even when he or she becomes dependent?

Dr Anne Grinyer, Faculty of Health and Medicine, Lancaster University UK

NOTE:  AYA = Adolescent/Young Adult

When parents care for an adolescent or young adult (AYA) son or daughter with cancer, the struggle that the AYA has in retaining their fragile independence throughout the treatment period can cause tensions within the family. If treatment fails and the AYA faces the end of life, the situation can become even more challenging for both the parents and the AYA whose failing health will necessitate increasing reliance on parental support. Yet despite deteriorating health, the AYA may attempt to assert their independence in order to live the remainder of their lives to the full – often causing parents acute anxiety in the process. How can this situation be managed?

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Fear of Recurrence: A young woman’s strategy to overcome it

VictoriaDavidby Victoria David, Living with Cancer

 

As a cancer patient, I mistakenly thought that once I was given a clean bill of health, I could breathe a sigh of relief and return to my normal life. After a year of treatment, I was finally given my “all clear”. However, my excitement was mixed with nervousness. This was not what I expected. I realized the nerves stemmed from a fear of recurrence. The safety net of being examined by health care professionals on a weekly basis would no longer be there.

 

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