Ask CancerCare

November 2006 This Month's Topic: How to Find Reliable Resources Featured Expert: Jacqueline Zahora, CancerCare's Program Director for Online Clinical Resources

Q. I’ve just been diagnosed with cancer. It seems there are so many resources and information available, I’m not sure where to start. How can I know the information I’m getting is reliable and is appropriate to my diagnosis and treatment?

A. Two key steps in locating reliable resources are: 1) researching what is available, and 2) contacting organizations that can point you in the right direction. Start by asking a trusted source, such as a member of your healthcare team – for example, your doctor, nurse or social worker – for referrals in your community.

Nonprofit organizations, such as CancerCare, and government institutions like the National Cancer Institute, can also suggest resources and make referrals. And, don’t forget to reach out to your own social network – friends, colleagues, or members of a support group – about their experiences and recommendations.

Tips for finding reliable resources:

• Keep track of the organizations you’ve contacted and a record of what services each organization provides.
• Ask for specific eligibility requirements for services and whether there are other similar organizations that can provide additional assistance.
• Keep a list of names of people you have spoken with for future reference if needed.

Q. How do I find groups to connect with others who may be experiencing similar issues or side effects from cancer treatment?

A. Connecting to a support group, whether in person, by telephone or online, is a great way to find information and support. If you call CancerCare at 1-800-813-HOPE (4673), one of our professional oncology social workers can help you by researching groups for you. He or she can let you know about groups offered by CancerCare, and those offered by other organizations as well.

You can also check our website to get information about CancerCare online support groups.

Another option is to contact a cancer-specific organization (e.g., Lung Cancer Alliance, Leukemia and Lymphoma Society) for support group information, as these kinds of organizations usually keep track of local groups offered by their chapters. In addition to support groups, many of these organizations offer “buddy” programs, which bring people together for mutual support. If you are not familiar with these types of organizations, please call us for assistance, or request a copy of A Helping Hand: The Resource Guide for People with Cancer using our online order form.

An excellent online resource is the Association of Cancer Online Resources (ACOR). They host “mailing lists” which are basically groups that exist solely through email. The focus is to share both information and personal experiences.

Often times it can be difficult to connect if a condition or concern is rare in occurrence. An online rare cancer resource that helps connect people is the Rare Cancer Alliance.

Seeking out information and support is an important step in making educated decisions and caring for your needs. If you need help finding these resources, please feel free to contact us.

Q:  How do I find information about a particular doctor or hospital? How do locate a specialist?

A:  There are many reliable sources of information for finding medical professionals or cancer treatment facilities. Professional organizations or associations are a good place to start.

The following resources can help you find information on specific oncologists, specialists and surgeons:

• The American Society of Clinical Oncology sponsors the website People Living with Cancer (PLWC). The site offers a “Find an Oncologist” database that allows you to search by many different criteria, including area of specialty, board certification, and location.
• The website of the American Board of Medical Specialties (ABMS) offers information about physicians who have additional specialty training and have met certain educational requirements.
• Check out the American College of Surgeons for extensive information about how to find a qualified surgeon. The site also provides a descriptive listing of different types of surgical specialists.

For information on hospitals, cancer treatment facilities, and surgical centers, try:

• The Joint Commission on Accreditation of Healthcare Organizations (JCAHO). JCAHO produces quality and safety reports on institutions that can be accessed through a database via their website.

• The Accreditation Association for Ambulatory Health Care. This organization provides certification to organizations that have met their high standards.
  

• The National Cancer Institute (NCI), which can direct you to NCI-approved cancer treatment facilities.

• MedlinePlus. This website provides links to directories to help you find health professionals, services and facilities.

Remember that you can also ask people you trust or other patients about their own experiences with particular physicians or treatment centers. It is important that you find a doctor with whom you feel comfortable since you and your health care team will be working very closely together.

Q:  I recently had my first chemo treatment and it wreaked havoc with my taste buds.  Will this happen when I have chemo again?

A:  You need to discuss this with your oncologist, as different chemotherapies can have different effects on your sense of taste and also the inside of your mouth. In the meantime, learn more about what you can do to lessen the side effects of your chemotherapy.

CancerCare offers many educational resources that can help you manage through your chemotherapy experience:

• Connect^® Booklet: “Understanding and Managing Chemotherapy Side Effects”
• Fact Sheet: “Practical Tips for Managing Nausea and Increasing Appetite During Cancer Treatment”

Our Telephone Education Workshops can also be replayed or downloaded from our website. Chemotherapy-related workshops include:

• Managing Chemotherapy Side Effects
• Management of Nausea, Vomiting, and Other Symptoms from Cancer Treatment
• Improving Your Chemotherapy Experience: Diet and Nutrition When You Have Chemotherapy Side Effects

The National Cancer Institute also offers its comprehensive guide, “Chemotherapy and You:  A Guide to Self-Help During Cancer Care”  (PDF version); and “Eating Hints for Cancer Patients Before, During and After Treatment” (PDF version).

Q:  What financial resources are available to patients? How do I find assistance to help even if I am insured?

A:  Finding direct financial assistance can be challenging, so CancerCare created a fact sheet entitled, "Financial Help for People with Cancer." This fact sheet lists the resources and suggestions that our social workers provide to clients who contact CancerCare. CancerCare also provides limited financial grants to help with cancer-related costs such as transportation and childcare (financial application ).

In addition, you can learn about other resources available from the following organizations:

• The National Cancer Institute website has a thorough listing of possible resources for help.
• The Patient Advocate Foundation offers a searchable database for local resources. You can search for many different types of financial help including: financial assistance, low income heating energy assistance programs, and food stamps.
• For both patients who are uninsured and those who have insurance but are struggling with co-pays or other additional costs, the Partnership for Prescription Assistance can help you determine if you are eligible for any possible assistance.
• The National Children's Cancer Society offers financial assistance for medical and non-medical expenses related to treatment for children with cancer.

The financial stress of a cancer diagnosis can be overwhelming, but remember that you are not alone. If you need help, speak with a hospital social worker to see if there are any local foundations or special needs funds available to assist you. Or contact CancerCare at 1-800-813-HOPE (4673) for more information.

If you are interested in sharing your story with your elected officials so that more can be done to help address this unmet need of people with cancer, you can find local elected officials through Project Vote Smart website.

Jacqueline Zahora is a licensed clinical social worker and the program director for online clinical resources at CancerCare. She is the coordinator of CancerCare's A Helping Hand: The Resource Guide for People with Cancer.

The questions and answers listed above are from the November 2006 Ask CancerCare feature.  New Ask CancerCare topics are introduced every month. 

If you have additional questions about finding reliable resources, please contact CancerCare directly for information and guidance.  CancerCare provides free professional support services, including counseling, education, financial assistance and practical help. These services are provided by professional oncology social workers. If you have a specific concern or question and would like to speak with an oncology social worker, please contact us at info@cancercare.org or 1-800-813-HOPE (4673).

For questions about medical issues, please visit Cancer.net, the patient information website of the American Society of Clinical Oncology (ASCO).