After being told you have a blood cancer such as leukemia, lymphoma, or myeloma, one of the most important decisions for you will be choosing the treatment facility at which you can receive the care that best suits your needs. It is important that the treatment facility you choose is experienced in treating blood cancers and has an experienced and caring staff of physician specialists (called oncologists, medical oncologists, hematologists, hematologist-oncologists, or pediatric oncologists), as well as nurses, social workers, and other healthcare professionals.
The physician that currently provides most of your medical care and coordinates your healthcare is often referred to as a primary care physician, internist, family physician, or family pediatrician. The first step in finding the right treatment facility for you is discussing a referral with your primary care physician. Often, your primary care physician will know of a good cancer treatment facility or he or she may recommend one or more board-certified oncologists who practice at an accredited treatment facility in your area.
Whether you choose your treatment facility based on the oncologist that is recommended or choose the oncologist based on the treatment facility, it is important that both are qualified and experienced in treating your specific type of disease. For this reason, you will want to question your primary care physician about the credentials of the treatment facility and the oncologist he or she is recommending. You may wish to take a family member or friend to accompany you for this discussion to listen, help ask questions, take notes, and lend support.
Another major consideration will be your health insurance coverage. You will need to consult your health insurance company to determine which treatment facilities and oncologists are covered by your plan. Some plans allow you more freedom in choosing a facility or oncologist, while others require that you choose from the company's list. It will help your primary care physician to have this information when he or she is considering a referral for you. Once you establish which facilities and oncologists are covered, you need to clarify which parts of your treatment will and will not be covered, especially if you are considering a cancer clinical trial.
In some cases when an insurance company says that it will not cover a particular oncologist, treatment facility, or treatment plan, a letter from your physician can help persuade the company to pay these costs. Some treatment centers offer the assistance of a social worker, case manager, or patient advocate to help patients and families to contact the insurance company and/or navigate the healthcare system. In addition, you can contact the Patient Advocate Foundation, a legal resource network, which provides advice and guidance with insurance and employment issues. The Patient Advocate Foundation can be reached at (800) 532-5274 or you can visit their web site at www.patientadvocate.org.
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Types of Cancer Treatment Facilities
Depending on your specific diagnosis and the area in which you live, you may be choosing between receiving treatment at your local hospital or community cancer center, area university-affiliated hospital, a comprehensive cancer center, clinical cancer center, or a community clinical oncology program. Many comprehensive cancer centers, clinical cancer centers, and community clinical oncology program facilities are designated and reevaluated every 3 to 5 years by the National Cancer Institute (NCI). These facilities are likely to offer the newest treatment options. Some treatment facilities fall into more than one of these categories. Many community hospitals and cancer centers are also surveyed and evaluated by the Association of Community Cancer Centers or the Joint Commission on Accreditation of Healthcare Organizations.
Comprehensive Cancer Centers. NCI-designated comprehensive cancer centers offer the most recent advances in cancer diagnosis and treatment, including participation in cancer clinical trials. These centers also provide community outreach and education programs about cancer. The benefits are up-to-date treatment, experienced healthcare professionals, access to clinical trials and a unit or associated center that performs stem cell transplantation, if needed. If your local hospital or cancer center is not an NCI center, then a potential drawback would be that you might have to travel to the NCI facility. This is more likely if you do not live in a large city.
Clinical Cancer Centers. These NCI-designated facilities also offer the most up-to-date advances in cancer diagnosis and treatment, including participation in cancer clinical trials, but may not provide the same emphasis on educating the community about cancer prevention and control. The benefits are up-to-date treatment, experienced healthcare professionals, access to clinical trials and most likely a unit or associated center that performs stem cell transplantation, if needed.
Community Clinical Oncology Program. This option is not technically a treatment facility, but rather an NCI-designated program by which local and community oncologists and institutions can work with researchers that are using NCI-sponsored treatments and conducting clinical trials. If your community center or local hospital is affiliated with an NCI center, you could benefit by having access to NCI sponsored treatments (including clinical trials) at your local facility.
University-Affiliated Hospital or Center. This is a hospital or center that is affiliated with a university or medical school. Because this is a teaching hospital or center, it is likely to offer up-to-date cancer treatment and care, have a supportive staff, and have a unit or associated center that performs stem cell transplantation. Possible drawbacks might be more student physicians (less privacy) as well as some travel to the facility.
Community Cancer Centers or Local Hospitals. This is the hospital or cancer center in your own city or area. There are many very good community cancer centers and hospitals. You may wish to receive your care at one of these facilities because it is close by and you are comfortable with the healthcare professionals who practice there. If your local facility is not affiliated with the NCI or a university, it is important to ask your oncologist if he or she will be able to consult with area university oncologists or NCI researchers before and during the course of your treatment. Furthermore, if the facility or oncologist is affiliated with the Community Clinical Oncology Program, you might be able to receive NCI sponsored treatments, including access to clinical trials, at your local facility. Possible drawbacks are fewer treatment options, lack of access to NCI clinical trials, and perhaps travel for a stem cell transplantation, if needed.
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Organizations that Provide Information about Treatment Centers
There are several organizations that can provide you with a list of treatment facilities or can help you verify the credentials and qualifications of a facility. When gathering information on treatment facilities, you will want to ensure that a facility is accredited; has experience treating your particular type of leukemia, lymphoma, or myeloma; and (for some types of disease) has a unit or is affiliated with a center that performs stem cell transplantation regularly. Some of the organizations that provide this information include:
- Joint Commission on Accreditation of Healthcare Organizations
- Phone: (630) 792-5800
Web site:www.jcaho.org
The Joint Commission on Accreditation of Healthcare Organizations (JCAHO) is an organization that develops standards for and evaluates healthcare organizations. To review the JCAHO performance reports for any participating institution, click on "Quality Check" on the home page of the JCAHO web site. - American College of Surgeons
- Phone: (312) 202-5085
Web site:www.facs.org
The American College of Surgeons' listing of their Commission on Cancer approved treatment centers can be accessed by clicking on "Search" at the above web address and then "Search for an Approved Cancer Program Near You" - National Cancer Institute
- Phone: 1-800-4CANCER
Web site:www.cancer.gov/cancercenters/centerslist.html
A list of all National Cancer Institiue (NCI)-designated comprehensive cancer centers and clinical cancer centers across the country. If you find that it is not reasonable for you to receive care at an NCI-affiliated treatment center, you can ask your physician about consulting with a researcher at such a center.
- Association of Community Cancer Centers (ACCC)
- Phone: (301) 984-9496
Web site:www.accc-cancer.org
The Association of Community Cancer Centers (ACCC) develops standards for and evaluates community cancer centers and institutions. Click on "Find a Center" on the home page. - American Cancer Society (ACS)
- Phone: (800) ACS-2345
Web site:www.cancer.org/docroot/FTC/ftc_0.asp?sitearea=ETO
This URL will access the American Cancer Society's Hospital Locator service. - Children's Oncology Group
- Web site: www.childrensoncologygroup.org/COGMembership.asp
This site lists the 238 world-wide member institutions who sponsor clinical trials for children and adolescents. - National Marrow Donor Program (NMDP)
- Phone: 888-654-1247
Web site: www.marrow.org/PATIENT/patients_guide_idx.html
The National Marrow Donor Program provides information on transplant centers, including experience with and outcome data on specific types of transplants.
If you do not have access to the Internet, you may wish to check with your local library about whether computers are available for your use. You can also contact most organizations by phone, and information specialists will answer your questions or mail information to you.
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When Immediate Treatment Is Recommended
For certain acute conditions, immediate treatment is recommended, leaving little time for "interviews". You may find it helpful to speak with the oncologist before beginning treatment to clarify the issues shown below. If you have any reservations about the treatment center, oncologist or the recommended treatment, you may wish to discuss with your primary care physician the risks versus benefits of selecting a different treatment center or taking the time to seek the opinion of another oncologist.
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Some Points to Consider when choosing a Treatment Center
Choosing a treatment facility can be an overwhelming task, especially after the emotional experience of receiving a cancer diagnosis. You, your family, and your physician should together consider the following issues:
- Is this a treatment center (and oncologist) in which your primary care physician has a great amount of personal and professional confidence?
- Is the treatment facility (and oncologist) covered by your insurance policy? Check with your insurance company for your options.
- Is the treatment facility JCAHO accredited, an NCI center, member institution of the ACCC, American College of Surgeons Commission on Cancer approved institution, or COG member?
- Does the treatment facility and the staff have experience in treating your specific type of leukemia, lymphoma, or myeloma?
- Does the facility have the newest treatments available? Will clinical trials be available?
- Are adequate support staff (nurses, social workers, case managers, patient advocates) available?
- Will you see the same professional staff each visit?
- Is there a pharmacy on the premises or nearby?
- Who will coordinate your care and the interdisciplinary team providing your care?
- How long can you expect to wait for appointments, treatment, or returning of your phone calls?
- How often does the facility perform stem cell transplants for your specific type of cancer?
- How do members of the facility cancer care team and stem cell transplant unit staff collaborate concerning your treatment and care?
- Do you know other cancer survivors who were or are being treated at the facility? Ask them what they consider to be the facility's advantages and disadvantages.
You should feel comfortable asking these and any other questions you have before and during your first appointment with the oncologist at the treatment facility. Bring these questions with you and take notes or use a tape recorder. Try to have a family member or friend with you.Return to top
Questions to Ask After Your First Appointment At The Treatment Facility
- Were all of your questions answered respectfully and completely?
- Were you satisfied with the treatment plan(s) proposed?
- Do the services and environment of the facility suit your needs?
- Did you feel comfortable at the facility?
- Was the staff available to assist you? Did you feel rushed?
- Did the staff seem well informed and knowledgeable?
- Did you feel comfortable with the oncologist and other staff members?
When asking yourself these questions, it is important to consider which features are most important to you. For example, for some persons, feeling comfortable with the oncologist and facility is as important as the treatment they receive. Some individuals may place a high priority on convenience in parking or location of the treatment facility, while others do not mind extra traveling for treatment. It may be helpful for you to determine ahead of time what factors are most important to you and on which factors you are willing to compromise.
If a family member or friend accompanied you on your visit, you might want to ask these questions of him or her as well. Above all, if you have misgivings about the treatment facility or your oncologist, you should seek a second opinion and keep looking. Your primary care physician can help you identify another oncologist and/or facility. While the search for the right facility can be a challenge, finding the treatment and support team you need is worth the effort.
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The Leukemia & Lymphoma Society is Always Here to Assist You
The Society offers accurate, current disease-related and coping information on blood cancers. Information Specialists are available to speak to patients and family members Monday through Friday from 9 to 6 p.m. Eastern Time at (800) 955-4572, or to respond to email inquiries at infocenter@LLS.org. They will also help you to locate the chapter nearest to you. You can also find your chapter by typing in your zip code in the upper right hand corner of the Society's web site at www.LLS.org.
Support groups, patient financial aid and other educational programs are offered through the Society's local chapters.
Published as a public service by
The Leukemia & Lymphoma Society
1311 Mamaroneck Avenue
White Plains, NY 10605
Phone: 914.949.5213
Fax: 914.949.6691
Web site:www.LLS.org
Information Resource Center (Toll Free): (800) 955-4572
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