Whether or not to seek a second opinion is a key question and a concern for all patients with myeloma. This 10-step summary attempts to answer the "ifs, whens, and hows" related to seeking a second opinion.
1.) Should you consider a second opinion?
It is essential to realize that a second opinion is always an option- whether it be a telephone "consult" or a complete re-evaluation with testing and recommendations provided. The urgency varies, as does the ability to travel and absorb the added expense. If in doubt, call the IMF Hotline to discuss options and potential help available.
2.) Do you need a second opinion right now?
Crucial questions that frequently deserve and require a second opinion are:
--Do I have active myeloma needing immediate treatment? Or do I have MGUS or smoldering myeloma, for which observation is the answer?
--What is the best first treatment in my case?
--Am I really relapsing and do I need new therapy?
At the very least, these questions require careful discussion, if not input from a myeloma expert.
3.) What should you do if treatment is planned?
In general, urgent issues should be treated immediately. However, if the recommendations include:
--Delay in potentially crucial supportive care such as: dialysis for kidney failure, IVIG for infection, kyphoplasty for severe pain/vertebral collapse,
thenreach out for help and advice.
Beyond urgent issues, there is usually time to assess treatment options for myeloma. This is an ideal time to get a second opinion.
4.) What about your main treating doctor?
Even if your main doctor is experienced and expert in the diagnosis and treatment of myeloma, be aware that there are always differences in philosophy and opinion. The major difference is the "watch and wait approach" versus the "treat aggressively now" approach. Along the same lines is the "control versus cure" controversy:does one aim for chronic disease control or does one attempt to achieve a cure. If you and your own MD have the same philosophy, a single opinion can be fine. However, even then, it can be enlightening to hear and discuss the opposite philosophy before reaching a final decision.
5.) Is getting a second opinion rude or inappropriate?
It is rare for a primary MD to object strongly to a patient seeking a second opinion. In fact the willingness to support the search for available options often strengthens the relationship with the primary MD. Nonetheless it is wise and polite to openly discuss the desire for a further opinion to avoid any misunderstandings. Couching the discussion in terms of "I think you are a great doctor..." (if true) or "we are concerned that you do not see that many myeloma patients..." (if this is the case) "but/so, we would like to seek a second opinion" is helpful. You can proceed from there.
6.) Which expert should I see?
This is a key question, and the IMF hotline staff are well prepared to help you. For example, it is well known that certain centers are very well equipped to do specialized testing to ensure a correct diagnosis and/or to ensure that baseline prognostic factors such as FISH results have been established. The choice of where to seek treatment may be influenced by such practical concerns as local convenience or the availability (or not) of reimbursement by your healthcare plan. Obviously, you may choose to pay out of pocket, if necessary.
7.) What is expected from a second opinion consultation? Important considerations are:
--Do I just want advice, or do I plan to receive treatment there as well?
--Am I planning to go to a center for treatment such as transplant or to receive a new drug in a clinical trial setting?
--Will I continue to see my primary MD? This is typically the case. After advice is received or new treatment completed, it is most common for patients to return to their local MD's care.
--Will I plan to return for periodic review? Again, it is common practice to see the specialist to get follow-up advice for the local MD.
8.) When is the best time for a second option?
In general, early in the disease course is an excellent time to make sure the diagnosis is confirmed and initial treatment decisions are the best possible. However, later can also be very helpful, especially at the point of myeloma relapse when new drugs are needed.
9.) How do I decide about one center versus another?
The best center for you depends upon the questions or needs, whether that be a one-time consult, or ongoing care, or the need for a transplant, or the need for a particular new drug available only in clinical trials. Right now, gaining access to pomolidamide, carfilzomib, and/or elotuzimab, for example, could be very important.
10.) What about follow-up?
At the time of a second opinion, recommendations are made, and typically the "myeloma expert" will call your local MD and/or send a summary report. It may be possible to proceed with a new course of action, or no changes may be required, or perhaps additional testing is needed. Frequently, the initial consultation is followed by an ongoing relationship between the "myeloma expert" and your local MD. This is ideal. It may be that you have to work with both doctors to make the partnership run smoothly and to your advantage. It is worth the effort and many times produces the best outcomes.
So there you have it! I hope that these perspectives and suggestions will guide your decisions in thinking about seeking a second opinion. If you need more specific advice in your case, please do not hesitate to contact the IMF at 800-452-CURE.