There are several types of oncologist:

• The medical oncologist, trained in the use of chemotherapy. Almost all NHL survivors utilize the skills of a medical oncologist. The medical oncologist usually is called simply an oncologist. Some medical oncologists specialize, however. For example, a hematologic oncologist is a medical oncologist who specializes in cancers of the blood, such as lymphoma and leukemia.

• The radiation oncologist, trained in the use of radiation therapy. NHL is seldom treated with radiation therapy alone, but small areas of your body may need radiation therapy to reduce tumor bulk or to control symptoms. When this is the case, your radiation oncologist will usually coordinate any treatment you may need with your medical oncologist.

• The surgical oncologist, usually found in subspecialties such as gynecologic oncology. You may need a surgical oncologist if a tumor has invaded pelvic organs or is near the heart.

We recommend that you choose a hematologic oncologist who is a lymphoma specialist as your primary oncologist. Hematologic oncologists specialize in treating lymphoma, and usually are associated with university medical schools. If you cannot find a lymphoma specialist in your area to provide your treatment, you should plan to travel for at least one second opinion from a lymphoma specialist during the course of your treatment. In particular, you should have your biopsy material reviewed by an expert in lymphoma pathology, such as the pathologists found at the National Institutes of Health (NIH).

You should search carefully for an oncologist who has a great deal of experience with your illness, and who keeps informed regarding the latest breakthroughs in NHL diagnosis and treatment, because NHL can be a challenge to diagnose, can convert to a different grade, and because treatments are evolving with vigor. It's of course better to make a good choice at first rather than at last, and it's especially important to find the right doctor before you make the decision to start chemotherapy or radiation therapy.

Before deciding on a local oncologist, you should consider traveling for care. Much of the best work being done for lymphoma is done at university medical schools.

A word about managed care: your insurance provider may have restrictions regarding who you may consult or where you may travel for care. Check your policy carefully for such restrictions and contact the provider before scheduling appointments that might not be covered. Some managed care providers charge only a modestly increased co-payment for out-of-plan doctors; others refuse to pay any of the doctor's fee; still others will pay most or all costs if medical necessity can be proved. If your HMO has a care coordinator, he may work with you to make special reinterpretations of the rules in your case. Often people never challenge their HMO's rules, but frequently those who do win a full settlement or a compromise.

If you have limited time to get recommendations, you can contact the nearest university medical school or the National Cancer Institute and ask for the names of several hematologic oncologists at their institution or in your area.

In addition to these two techniques, there are several other ways to search for qualified oncologists:

Bear in mind that when you choose a doctor, by default, you also choose a treatment center. Ask the doctors on your short list at which hospitals they have admitting privileges, and which, if any, NCI-designated treatment groups they are associated with.

There are several different types of treatment centers: university hospitals, cooperative lymphoma groups, and community clinical oncology programs.

University hospitals

University hospitals or other research institutions funded by the NCI, such as Memorial Sloan-Kettering Cancer Center in New York or the Mayo Cancer Center in Rochester, Minnesota, are very likely places to find the latest advances in lymphoma treatment.

When regulatory agencies decide who will be allocated scarce resources or who will be given permission to provide rare services such as PET scanning, the university hospital is a likely choice because the infrastructure, such as skill levels and staffing, is already in place. In addition, the cooperative and collaborative nature of the university hospital tends to attract the most talented medical researchers. In most cases, these same researchers are also expected to provide patient care. This means that the latest treatments are likely to be offered in this setting first, that the accumulated experience level among the staff is high, and that you'll be treated by some of the most talented and knowledgeable people in the country. Some studies have shown that centers that treat more than forty lymphoma patients per year have a higher success rate than centers treating fewer.

University-associated hospitals and cancer centers are the institutions most likely to be designated by the NCI as either Comprehensive Cancer Centers or Clinical Cancer Centers. All NCI-designated centers are nonprofit institutions.

Some people are afraid to receive healthcare at a university or teaching hospital because they fear they will be subjected to unproven or unnecessary treatment by newly graduated medical students who may not know what they're doing. It's true that a training mission incorporated into a hospital's charter means that you may be examined or cared for by more than one doctor, but this can be an advantage as well as a disadvantage. These advantages and disadvantages differ little from having a family doctor who is a member of a large practice: while it's true that you may not always see the same doctor, it's also true that you need not go without help if your doctor not available.

Newly graduated doctors, called interns, are seldom charged with care or decision-making in the absence of your attending doctor or an oncology resident. You're always free to say that you prefer that a procedure or exam be done by someone with more experience.

In the U.S., unproven treatments are never performed without clear written informed consent if your hospital receives any federal funds or is governed by local laws regarding informed consent. If you are approached to take part in a study of an unproven treatment, called a clinical trial, you always have the right to refuse, and if you do decide to enroll, you always have the right to withdraw later.

A most important fact all cancer survivors and their loved ones should be aware of is that, for cancer treatment, a placebo is virtually never used. The new, unproven treatment is offered in clinical trials that compare the new treatment to standard, approved treatment--never to an inactive sugar pill. The rare exception is the watch-and-wait approach suggested for some low-grade NHLs. When there is no standard treatment to which the new treatment can be juxtaposed--such as the very first bone marrow purging procedures in the early days of bone marrow transplantation, or the watch-and-wait procedure--this lack is clearly communicated by those attempting to ensure that consent is indeed informed consent.

Note that a community teaching hospital is not the same as a medical school training hospital, although the community hospital may have residency programs that accommodate certain university medical school training needs, such as emergency room rotations.

Cooperative lymphoma groups

Cooperative lymphoma groups are comprised of university hospitals and cancer treatment centers who take part in administering very large multi-center trials of new treatments. There are about thirteen clinical trial cooperative groups in the U.S. A list of the centers in these groups can be obtained by phoning the NCI's Cancer Information Service.

Community clinical oncology programs

This program links community doctors with the clinical trial cooperative groups described in "Cooperative lymphoma groups." For a list of groups in your area, phone the NCI.

Treatment at no charge

The National Cancer Institute provides free cancer care to those who qualify, but only within clinical trials. A referral from your local oncologist is necessary for entry into a trial. Non-U.S. citizens may be admitted at the discretion of the principal investigator of the trial.

St. Jude Children's Research Hospital in Memphis, Tennessee, provides free treatment for children.

Some university and community hospitals have a policy guaranteeing that they will provide medical care for local residents who cannot pay.

If a check on credentials wasn't part of the process you used to come up with a list of candidate oncologists, you can check credentials now. Any doctors recommended by the NCI or a clinical center have undoubtedly already had a thorough check of their backgrounds and qualifications, however, you might want to see them for yourself.

You can check doctors' professional qualifications in some of the same publications listed earlier as aids to locating qualified oncologists.

Once you have found one or more board certified oncologists who seem excellent, you can interview them to make sure they're good candidates. No matter how many recommendations you receive or sterling credentials you have uncovered, until you have a candid conversation with the human behind the stethoscope, you won't know if this is a person with whom you'll feel comfortable.

A survivor of low-grade disease describes her perspective on the doctors she considered:

    The first oncologist I went to made some attempt to figure out who I was, figuring that he and I would be having a long-term doctor-patient relationship. He asked me to describe the history of the symptoms that led to my diagnosis. He had spoken to my internist. Unfortunately, making judgments based on a one-hour meeting with a newly diagnosed and obviously upset cancer patient can be shaky. He said that there were three options for my low-grade lymphoma: wait and watch for symptoms to appear, mild chemotherapy with oral medication, or more aggressive chemotherapy with a drug that had come to market about a year before. He decided after this one meeting that I was not "psychologically disposed" to sit around doing nothing, and told me I should go ahead with the aggressive chemotherapy because then I would feel that I was "doing something."

       Funny, I am the same person who had natural childbirth rather than take medication, who never took a painkiller after my biopsy, who refrained even from taking vitamins to avoid putting something unnecessary into my body.

       After seeing two other oncologists, both of whom advised me to delay treatment for as long as possible, I decided to use one of them as my oncologist. The first doctor was surprised that I made this choice-he is local, and I have to travel one hour to see my doctor of choice. But I feel I am "doing something." I feel that I am not using up a chemotherapy option before I really need to. I believe that I have taken charge of my life, even if I cannot control my disease. Most of all, I am appalled that a doctor would suggest using chemotherapy for psychological purposes. There are other ways to treat stress, anxiety, and depression. For these symptoms, I found meditation tapes, music, hot tea, and a good shrink.

Schedule a meeting to ask any questions you have about medical background and about the doctor's attitudes and office policies, such as:

• How many patients with your type of lymphoma has she treated?
• At what hospitals does she have admitting privileges?
• Which clinical trials is she familiar with? It's important to have an oncologist familiar with the latest research in NHL.
• Which institutions is she affiliated with? For instance, does she have a faculty appointment at a medical school in addition to a private oncology practice?
• What treatment does she recommend? After the appointment, evaluate how this recommendation compares with what your reading has taught you.
• What is her policy for handling emergency calls after business hours?
• How will test results be communicated? Will ancillary doctors be given permission to communicate directly with you, the patient? Does the doctor object to leaving information on your answering or fax machine, if that's a method you prefer?
• Are family members welcome to call with questions? Some doctors prefer communicating only with the patient.
• Does the doctor's philosophy about health and life mesh well with your own? For example, does she espouse treatment at all costs over quality of life?
• Use some of this interview time to describe yourself and your expectations, such as how much participation you would like to have in healthcare decisions.

Neeraj, a survivor of NHL/ALL, describes how angry he felt when an insensitive doctor blurted out his diagnosis, then walked away:

       I was diagnosed with a hybrid of T-cell ALL and non-Hodgkin's lymphoma on Halloween 1994 (was that scary!). I have been in remission since December 1994, and finished high-dose induction followed by twelve months of consolidation chemotherapy in November 1995. I was on low-dose maintenance therapy for two years after.

       It hasn't been roses all the way. My diagnosis was a nightmare. This doctor (not my current hematologist) came in with my CT scan results, asked me what I was studying at school, what and where I was having pain, touched me at my sternum which hurt like hell, and then said in an unconcerned voice, "Okay, I must tell you that you have cancer, and you have it all over, in your chest, spleen … just one big laundry list." Then he said, "We have to do a bone marrow biopsy right away, so follow me," and vanished, leaving me and my brother-in-law behind in a state of shock. So when I got out of the room, I bumped into a nurse dressed up as a witch for Halloween, and she said, "Did I scare you?" I told her that she didn't, but the doctor sure did.

       Even today I have not been able to reduce my resentment for that guy, but the rest of the doctors and nurses have more than made up for that first experience. I can't help but think that I get preferred treatment now that I have established such good relationships.

Overall, you want to make sure that the oncologist you choose has excellent medical credentials, extensive experience with NHL, and is affiliated with a treatment center that offers up-to-date resources. You'll want to weigh in other considerations such as communication skills, personal style, and office location.