What are the benefits of seeking a second opinion?

When you receive a diagnosis of cancer, you may feel a sense of urgency to start treatment immediately. However, because Waldenstrom macroglobulinemia (WM) is a slow-growing cancer, it’s worth taking the time to make sure your diagnosis is correct and your treatment plan makes sense. This is especially important with WM since it is a rare disease, and many local doctors may not have experience treating people who have it. Seeking a second opinion can help you feel confident you are getting the right care.

Getting a second opinion from an expert in WM can:

• Confirm your original doctor’s diagnosis and treatment plan
• Provide more details about the cancer
• Raise additional treatment options you may not have considered
• Recommend a different course of action

Even if you have already started treatment, it’s not too late to get a second opinion!

How do I go about getting a second opinion?

Getting a second opinion means asking another hematologist/oncologist, or a team of specialists, to review your medical records and test results, give an opinion about your diagnosis, and suggest treatment options.

The idea of seeking a second opinion may seem overwhelming at first, especially when you’ve just been diagnosed with WM. It can take some time and effort to find a second doctor, arrange the appointment, and deal with any insurance issues that may arise. In addition, some people are reluctant to tell their current hematologist/oncologist that they want a second opinion. But this is not an unusual request and doctors are used to hearing it.

If you decide to get a second opinion, you can ask your doctor for a referral. Many major cancer centers will have hematologists/oncologists with WM expertise. While the IWMF does not directly refer patients to physicians, there are several ways we can help you locate a specialist in your area:

• Contact the IWMF Support Group leader closest to where you live, and he or she may be able to give you the names of hematologists/oncologists recommended by members of the group.
• Send a request for information to participants of our Internet-based forum IWMF Connect asking for recommendations for a WM expert in your area.
• Refer to the IWMF directory of cancer centers and physicians with expertise in diagnosing and treating WM. These physicians have agreed to consult with local hematologists/oncologists.

Once you’ve chosen a physician to see for a second opinion, ask the staff at your current doctor’s office for a copy of your medical records. You can either take your medical records to the new physician yourself, or have copies sent directly to his or her office by signing a release of information form. However, for the sake of efficiency it’s usually best for you to bring your records to the new office and hand them directly to the consulting physician.

How do I decide which doctor should manage my disease?

After receiving a second opinion, you may have several options to choose from in terms of moving forward with treatment. These can include being treated by:

• your local doctor according to the plan he or she initially recommended;
• your local doctor, who agrees to follow the recommendations provided by the WM expert;
• or the WM expert who provided the second opinion (finances and distance allowing).

Choosing the doctor you want to manage your disease is one of the more important decisions you’ll make. Ask yourself the following questions when making this decision:

• Is your attitude towards your illness and treatment similar to that of the physician?
• Do you share a common treatment philosophy? For example, some physicians are more aggressive and may encourage participation in clinical trials. Others may be more conservative in their approach and lean towards older, better-known treatments.
• Do you feel comfortable asking questions and communicating concerns to the physician and other members of his or her team?

There is no “correct” decision; there is only what is right for you. Whatever you decide, you can feel more confident moving forward knowing that you’ve sought more than one opinion.

Travel Assistance for Second Opinions
The IWMF & NORD Travel and Lodging Assistance Program for individuals traveling for second opinions and clinical trial eligibility

The IWMF has partnered with The National Organization for Rare Disorders (NORD) for a travel and lodging assistance fund for individuals traveling for second-opinion or WM diagnosis confirmation appointments and/or travel related to clinical trial eligibility screening or first clinical trial visit (not being paid for by trial sponsor) up to the program’s established financial limit. This program is available to eligible individuals both inside and outside of the U.S, except those residing in a country subject to U.S. sanctions per the U.S. Department of Treasury Sanctions Program. With an award cap of $1,500, this program provides economy class airfare for the patient as well as one traveling companion and up to two nights of hotel accommodations. Also, for those driving (distances of two hours or more) a reimbursement of a flat amount of $200 to cover mileage, tolls and parking will be made after the visit has occurred. For further information or to apply for this new program, contact NORD at 203.308.5902 or by email at IWMFTravel@rarediseases.org.