Patient Packet

Details

Category: Programs

Created on Thursday, 20 December 2012 04:13

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.

Accuracy:

• Are the facts accurate – and not just opinion?
• Is the information well written, well organized and presented clearly?
• Are the sources of information clearly given?
• Can the information be verified?

Authority/Sponsorship:

• Where does the information come from? Is it clear who wrote it?
• Is the author an authority on the subject?
• Can you identify the site sponsor?
• Is there contact information? An “About Us” link?
• Look at the web address – it gives information about the nature of the site and sponsor’s intent:
  • .gov generally indicates a governmental agency
  • .edu usually refers to an educational institution
  • .org commonly denotes a non-profit organization
  • .com typically is used by commercial/profit businesses

Bias/Purpose:

• Does the author bring any biases in posting the information?
• Who runs the site and pays for it?
• Purpose in offering this – to inform? to persuade? to sell?

Currency:

• Is the information current? Are the dates listed?
• How frequently is it updated? Date of last revision should be clearly posted.
• Is it recent enough to be useful?

Coverage:

• Even if the information is accurate, is it comprehensive? What’s missing?
• Are other or better sources available? How do they compare?
• Who is the intended audience?
• Once again, remember that some organizations are more reputable than others, and that the quality and reliability of information varies significantly.

Online Resources

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."

For Evaluating Health Information on the Web

• See "Evaluating Online Info" in our Sarcoma Compendium.

Selected Recommended Patient / Consumer Health Web Sites

• See "Sarcoma Websites" in our Sarcoma Compendium.

General Health Information Sites

• See "General Health Info" in our Sarcoma Compendium.

Miscellaneous (Research, Patient Advocacy, Support, etc.)

• See "Support and Resources" in our Sarcoma Compendium.

Specifically Children's Health

• See "Cancer Info ~ Children" in our Sarcoma Compendium.

Major Medical Centers

• See "Cancer Treatment Facilities -- Major" in our Sarcoma Compendium.

Questions to Ask Your Doctor

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.

Type of Sarcoma

• What type of sarcoma do I have and where is it located?
• Does this hospital/medical center treat (adult/pediatric) sarcomas?
• Do you have the medical/surgical and rehabilitative services to care for sarcoma patients?
• How is/was this diagnosed?
• What is the success rate in treating this type of sarcoma?
• Has the cancer spread? Are there metastases, and if so, what does this mean?
• What is the cell type/grade/stage of the cancer, and what specifically does that mean in my case?

Evaluating Physicians

• Affiliated with a sarcoma center?
• Board certified? Area of specialization/sub-specialization?
• Training and level of expertise in treating this form of sarcoma?
• Other members of the health care team? Who will be my primary contact?
• Which health insurance plans are accepted? Availability of social services and/or financial assistance?

Causes, Risk Factors and Prevention

• What are the risk factors for this type of sarcoma?
• Do we know what causes this?
• What is the risk of recurrence?
• Where are the most common sites of recurrence with this type of sarcoma?
• If there is a recurrence, what are the chances of a successful cure?
• How can the probability of recurrence/metastasis be reduced?
• How will this affect other illnesses/medical problems I have and their treatment?

Treating Sarcoma

• What treatment options do I have (you may want to ask about complementary/alternative therapies, as well as conventional forms)?
• What treatment(s) do you recommend and why? What are the expected results of each type of treatment?
• What risks or side effects (short-term and long-term) are associated with the different forms of treatment?
• What can be done to prepare for treatment, and minimize/manage the side effects?
• Will there be pain associated with the therapy? If so, how will this be reduced?
• What are the chances the sarcoma will recur with these various forms of treatment? Does one type of treatment reduce the risk of the cancer coming back more than another?
• What is the general prognosis/chance of survival with these treatments?
• What kind of recovery and rehabilitation will there be?
• How will this affect/restrict my diet? My work and daily activities? Exercise?
• Where would you suggest I seek a second opinion, if desired?
• How often will I need to have follow-up exams? And for how long after therapy?
• How will I know if the cancer has returned? What symptoms should I watch for?
• Implications regarding associated costs and health insurance coverage?
• Are there fertility issues if I need to have chemotherapy? Do we have time, and what is involved in potentially preserving my fertility?

Possible Clinical Trials

• If appropriate, are there any clinical trials I could take part in?
• Where are studies being run the studies and what are their purposes?
• How do the trial treatments compare to others?
• How would the trial affect me and the progression of the cancer?
• Costs/expenses? Do I and/or the hospital benefit financially from being on this clinical trial?
• What will happen if I decide to remove myself from the trial?

Patient Testimonials

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