This patient assistance packet is information provided by Northwest Sarcoma Foundation for newly diagnosed sarcoma patients and their families. It contains helpful links, questions to ask your doctor, and patient stories.
Northwest Sarcoma Foundation is a non-profit organization that supports sarcoma patients and survivors in Washington, Oregon, Alaska, Montana and Idaho. The foundation is intended to support and educate those living with sarcoma. Additionally, we strive to be a supportive resource for friends, family and caregivers.
Information Resources and Assessing Web-Based Health Sites
Historically, medical information has been provided at the physician’s discretion. Today, more and more people are accessing health information online, as many organizations are creating medical-related web sites. It is important to remember that the quality of online medical resources varies tremendously, and it is often difficult to determine which sites are most reliable/trusted.
Consumer health and medical librarians can assist in locating the best resources. The main criteria for assessing the quality of web sites are accuracy, authority, bias, currency, and coverage.
Below are many categorized resources for online information about cancer in general, sarcomas, and related information. Be sure also to visit our larger collection of online resources, categorized within our "NWSF Sarcoma Compendium."
While being diagnosed with cancer can be overwhelming, it is important to learn about the disease, how it is treated, and how best to apply the information to your specific situation. It is equally important to have open, honest discussions about this with your health care providers. The questions suggested below provide a guide to help you understand sarcoma and your treatment options, and to allow you to be an active participant in your care.
You may find it helpful to write down your questions ahead of time, and take notes during your appointments, so important information is not missed. Also consider taking a friend or relative along to be your scribe, to help you understand what is said, and to refresh your memory afterward.
Almost four years ago, when I was twenty years old, I was diagnosed with Ewing’s Sarcoma in my right femur. At first I thought it was complications due to my recent ACL and meniscus’ repair in my right knee, but after an MRI and a swift round of testing, results showed it to be a much greater problem. At the moment I found this out, the battle began and it was certainly just that. Through the support and experience of my family, friends and doctors, especially Dr. Conrad and Dr. Howlett, I was able to make it out of the struggle, cancer free about a year later. Finding the tumor in time and gaining all the knowledge about sarcomas that I could, played an integral role in my survival. Awareness is the number one tool for prevention, detection and treatment. Although sometimes fatal, sarcoma can be treated if found in time. Northwest Sarcoma Foundation can be a major influence in curing this disease and raising awareness. The foundation provides great information and facilitates fundraising events and opportunities that go directly toward conquering sarcomas. They also provide endless support for not only the patients, but the family and friends as well. It is so important to create a compassionate and encouraging atmosphere for all involved, which Northwest Sarcoma Foundation certainly does.~Justin Sweeney
I was diagnosed in December 2002 with liposarcoma, after an MRI detected the presence of a large tumor in my leg. It’s hard to believe that was five years ago. Throughout this "journey", I have learned a number of things. The first is the importance of being your own best advocate in actively managing your health care, and how critical is it to have the proper information -- knowledge is, indeed, empowering. I also learned the importance of knowing yourself, and making the choices that are right for you, individually. Personally, I came to understand the connection between "body and mind" in the healing process, and the value of an integrated approach to treatment.For anyone dealing with sarcoma, the support of others is critical, as well as access to quality information resources. Through Northwest Sarcoma Foundation, we strive to increase awareness of an orphan cancer that doesn’t receive much attention or funding. We are creating a network and resource for patients and their families fighting this disease, so that they can receive the assistance needed and are able to make informed, timely decisions which are critical in treating sarcoma. For me and so many others, this support has been invaluable. ~Sarcoma Survivor/Past Northwest Sarcoma Foundation Board Member
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