When you’re diagnosed with Waldenstrom’s macroglobulinaemia, your consultant will plan your treatment path, including regular check-ups, active monitoring (or ‘watch and wait’) and treatment regimens like chemotherapy.
Many people are happy with their treatment plan, but some people aren’t as sure about their diagnosis or treatment recommendations and seek a second opinion.
A second opinion means seeing another GP or specialist doctor to get their view on your diagnosis and/or treatment. Although seeking a second opinion isn’t a legal right, most healthcare professionals are happy to consider your circumstances and refer you if needed.
You might feel worried about asking for a second opinion, in case you upset or offend your doctor. Don’t worry, this is very unlikely to happen. After all, doctors often seek advice from their colleagues, especially when dealing with an uncommon disease like WM.
Advantages of seeking a second opinion
- If your doctors agree, you have the reassurance that you are on the best course of treatment for you
- You may be given the option of a different treatment
- You may get on better with a different doctor, which can be important when discussing treatment and diagnosis at check ups
Disadvantages of a second opinion
- It can take time for the referral to go through and an appointment to be made, so you may delay the start of any planned treatment
- You might have to travel to a hospital that isn’t local to you
- It might be upsetting to hear your diagnosis and treatment a second time
- Sometimes choosing between two different treatments can be difficult
Before you seek a second opinion
It’s important to think through the exact reasons for seeking a second opinion beforehand, so that you don’t waste time and effort. Sometimes, by reaching out to your current consultant and their team, you can work through any problems you have. For example:
- You don’t understand what your doctor told you, or why they’ve made the recommended treatment plan. Doctors are very aware how difficult it is to take in details about complex medical information whilst receiving a diagnosis, so don’t feel embarrassed to ask your current doctor to go over everything with you again. You may also have read up more about your diagnosis or treatment since your appointment, and have more questions or concerns. Talking these through with your consultant can help you understand everything better.
- You are unhappy with your diagnosis or recommended treatment. You may have talked to other patients and heard of them having different treatments, or perhaps you’ve heard about a new treatment in the news. This can make you feel less confident in the decision about your own treatment. Feel free to talk through these concerns with your doctor – they will be able to explain why they’ve made the recommendation they have. Remember WM is a complex disease and behaves very differently from individual to individual. Therefore, some treatments that work for one patient may not be as effective for another.
- You find it difficult to talk to your doctor. It’s important to have confidence in your doctor, as well as feeling you can voice concerns with them. If you don’t feel like this with your current doctor, try speaking to another member of the consultant’s team, like another doctor or a specialist nurse. They may be able to help with any misunderstandings, or offer to speak to your doctor on your behalf.
How to get a second opinion
If you decide that your best course of action is to seek a second opinion, you can ask your current consultant to do so. They can refer you to another NHS doctor who specialises in WM. This won’t mean that the second doctor will automatically take over your care; if you want them to become your new doctor, they will have to agree.
If you are having problems with organising a second opinion you can contact the Patient Liaison Service (PALS) with any issues. You can find your local PALS here.
Preparing for your second opinion appointment
It is a good idea to prepare for your appointment beforehand, for example:
- Writing down any concerns you have
- Questions you might have about any new treatments, or why certain treatments are being recommended
- Asking someone you trust to come with you to the appointment for moral support, and to help you recall the information the doctor gives you
- Getting together all the medical information you have on your original diagnosis and treatment, including a note of your symptoms