For many cancers early detection and treatment are important to one’s survival. However, WM often offers a patient the luxury of time – time for a second opinion (which is always a good idea) and time to seek out a competent and compatible physician. Selection of your local oncologist is the first, and perhaps the most important, choice you will make. In general he or she should be board-certified in hematology or oncology. Experience in treating patients with WM is preferable, but few oncologists have such experience. The oncologist you choose should, at the very least, have extensive experience with lymphoma, leukemia, or multiple myeloma.
It is also vital that you and your physician be on the same wavelength. A patient who insists on equal partnership in treatment choices must be certain that the physician is comfortable with such an arrangement.
Beyond this consideration lies the necessity of physician and patient to share a common attitude toward treatment. Some physicians are more aggressive and are willing to take risks for the possibility of better control of the disease. Others are more conservative and inclined to recommend older, better-known treatments. Obviously, your attitude toward your disease and your willingness to take risks are more compatible with a physician of similar thinking and attitude.
The IWMF does not refer patients to physicians, but we can suggest several ways to help you locate a doctor.
A WM patient who contacts us is referred to the nearest support group leader; the patient may then contact the leader to ask for the names of oncologists recommended by members of the support group.
If a patient travels to a major cancer institute for second-opinion consultation, the consulting physician may offer names of oncologists with WM experience in the geographical area where the patient resides.
Yet another way of finding a physician in a specific location is to send a request for information via IWMF-Talk.
A Second Opinion is Always a Good Idea
Over and over again you will hear it said: WM is a rare disease. And indeed it is. Just consider the following: of all the patients diagnosed with the more than 100 types of cancer, only 10-12% have a hematological malignancy or disease of the blood. Patients with blood cancers are outnumbered 9-1 by those diagnosed with all other forms of cancer. Only 1% of patients with cancer have multiple myeloma. And since Waldenstrom's macroglobulinemia is 1/8 as common as multiple myeloma, Waldenstrom's patients are indeed a very small subset of cancer patients.
In the busy office of an oncology practice, the doctor is called upon to treat all types of cancer. Among his or her patients the doctor will certainly have some with different types of blood cancers--primarily leukemias and lymphomas. However, unless an oncologist has a special interest in WM, his experience with the disease will be limited. It is not at all surprising or unusual that you as a patient find that the oncologist you have been referred to has limited experience with caring for and recommending treatment for a patient with Waldenstrom's.
The care and the management of WM is different from that of other lymphomas. Once the diagnosis of WM has been correctly made, the first issue post diagnosis is whether or not treatment is necessary at that time. Since WM is an indolent or slow-growing malignancy, many patients do not need treatment immediately and can continue with a "Watch and Wait" approach while being monitored by their local oncologist.
In this regard, WM is different from most types of cancer where a diagnosis is followed almost immediately by treatment. A newly diagnosed WM patient may well expect that they should receive chemotherapy as soon as can be arranged. But this is not necessarily the case. The need for treatment will depend on whether or not the patient has symptoms and signs of the disease. An oncologist who has experience treating many patients with WM will be aware that treatment does not need to follow immediately after diagnosis when the patient is without symptoms. And, once patients learn more about the indolent nature of WM, they come to understand that, if they are asymptomatic, treatment can be postponed until symptoms of the disease warrant therapy. Sometimes this period of "Watch and Wait" will continue for years. However, an oncologist who does not have experience in caring for WM patients may urge a newly diagnosed patient to take an aggressive stance and begin treatment at once, before the symptoms indicate that it is necessary. If you, the patient, suspect that this may be your situation, the safest course of action is to get a second opinion from a WM expert before beginning any recommended therapy.
But when the patient clearly has symptoms or signs warranting treatment, then the next question to arise is what kind of treatment? The answer is not straightforward. There are many different treatment possibilities. There are different types of drugs and combinations of drugs that are beneficial in treating Waldenstrom's, but none of the treatments has been compared one against the other in a clinical setting. At this point a Waldenstrom's patient needs to see a specialist in a large medical center who is knowledgeable about the disease and its treatments. In many instances it is difficult or impractical for a patient to seek out a specialist. If this is the case,his local oncologist should speak to a specialist at such a center to help determine, first of all, if treatment is appropriate, and, if so, what treatment should be followed and whether or not a clinical trial is a possibility. A local doctor can follow the directions for a treatment regime outlined by a specialist, even if the specialist is at a distant cancer center.
In light of all that is said above, it is clear that the local oncologist plays an important role in the survival of a WM patient. It is the relationship between the patient and his oncologist that is of greatest importance. Open communications are essential beween the two. In order for the patient to have confidence and trust in the oncologist, he or she must feel free to ask questions and to bring up information they have found from the IWMF and other sources. For his part, the oncologist needs to be responsive and open to discussion so that treatment decisions are mutually agreed upon. If, however, the patient finds that trust and confidence in the doctor are not possible, either because of the oncologist's lack of experience with WM or for some other reason, then in such a situation the patient should turn elsewhere to find a doctor in whom he has confidence and with whom he can communicate.
Where to Get a Second Opinion
With more than 100 types of cancer, it is unreasonable to expect every hematologist/oncologist to be equally familiar with all of them. Given the rarity of WM, it is not at all unusual to find physicians who have never treated the disease. With a heavy patient load, many simply do not have the time to keep up with the latest research.
Below you will find a short list of major cancer centers where WM experts are located. Many patients feel it is well worth their while to travel hundreds of miles for an expert second opinion.
For your convenience in seeking a consultation for a second opinion, we are providing this list of well-known cancer institutes we work with and physicians/researchers who are very knowledgeable about WM. These doctors are also willing to consult by phone with your oncologist, who may be interested in advice on treatment plans and other issues if he or she has not treated many WM patients in the past. The oncologist who has treated WM patients in the past may also seek advice about the most recent treatment and care regimens since current research is continually yielding new treatment options.
Please know that it is impossible to list here every cancer institute and every physician/researcher with extensive knowledge of WM. We will, however, be working on a more comprehensive list for website publication.
Major Cancer Institutes & WM Experts
Dana-Farber Cancer Institute, Boston, MA
Patricia Sheehy, NP, Tel. 617-632-3823 for appointment
Dr. Irene Ghobrial, ,
Mayo Clinic, Rochester, MN
Dr. Stephen Ansell,
Dr. Suzanne Hayman,
Dr. Morie Gertz,
Mayo Clinic, Scottsdale, AZ
Dr. Rafael Fonseca,
Mayo Clinic, Jacksonville, Florida
New York-Presbyterian Hospital/Weill Cornell Medical College, NYC, NY
Dr. Richard Furman,
M.D.Anderson Cancer Center, Houston TX
Dr. Donna Weber,
Stanford Cancer Clinic, Stanford CA
Dr. Ranjana Advani,
Tel. 650-498-6000 (Lymphoma Clinic)