Once your Oncologist recommends a treatment, make sure you are comfortable with the decision. Conduct your own research, contact the Canadian Lifeline or discuss with your fellow support group members in case they have had to make a similar decision.  In certain cases, it might involve getting a second opinion.  With a disease as rare as WM, seeking a second opinion may benefit you as well as your Oncologist, as he/she, may have had very limited exposure to treating WM or may not be familiar with all the treatment options that are available to treat your symptoms or minimize side effects.  Speaking with a consulting oncologist who may have experience with treating your specific symptoms or at least having treated numerous WM patients, could be very beneficial.  This approach might be particularly useful in situations involving relapsed (cancer has returned) or refractory (treatment was not successful) treatment.  It is very useful to maintain and forward copies of all your medical records and tests to minimize costs and time for the second opinion.

In March, 2023, we had a National Zoom on the subject of second opinions, presented by a patient advocate with personal experience in obtaining second opinions during her CLL diagnosis and treatments.  The video can be found here, on our YouTube channel.  The slide deck can be found here, for your convenience.

In Canada: Ask your GP or Oncologist to refer you to a second Oncologist for a second opinion.  No one knows all the answers for this disease and requesting a second opinion is valuable to both the patient and the referring Oncologist.  You need to be comfortable with your Oncologist’s recommendations especially given the rarity and the few patients with WM your Oncologist may have treated.

In the United States:  There are a few hospitals in the United States that conduct research in WM and also specialize in treating WM patients.  Just by the sheer numbers, these Oncologists typically see a significantly larger number of WM patients than Oncologists in Canada and may have seen other patients with similar concerns.  Medical work in the United States can be expensive, so we recommend considering the following suggestions:

• Request a Doctor with Doctor Consultation: Discuss with your Oncologist as to whom he should contact for a second opinion.  A few WM experienced US Oncologists are prepared to offer this type of consult as a courtesy to your Oncologist at no cost or nominal cost to you.  The WMFC can make some recommendations as to whom to contact should you have some concerns.  This is definitely the quickest and the least expensive route, although you may be left out of the discussion.
• Send your medical records and tests directly to the consulting Oncologist: This will take more time and there will be a cost involved.  Quite often, the consulting Oncologist will be familiar with the Canadian treatment protocols and drug approvals and can make recommendations for treatment in Canada.  Also, the consulting Oncologist may request further testing that, with the approval of your Oncologist, can be conducted in Canada.  This can take a few days or weeks to evaluate your records and make recommendations for treatment and any further testing that is required and will be moderately costly.
• Travel to the United States and see an Oncologist: This can be expensive; however, it might be worth it especially for those patients who want to be directly involved in the second opinion process. Again, the consulting Oncologist may work with your Oncologist and arrange to have as much testing and treatment done in Canada to minimize the costs.  There is also the added advantage of possibly being exposed to the opportunity of participating in Clinical Trials in the US, that may be compatible for treatment in Canada, to offer you a different treatment option.  Typically, many of the costs associated with Clinical Trials are assumed by the hospital or drug companies involved, in an attempt to encourage your participation.