Seeking a second opinion, when and why you might want to.

Note that this is written largely from a UK perspective, and references specific UK legislation/regulation, while much of the sentiment will still apply I’m not too familiar with the ins and outs of other country’s medical care systems. If you’re seeking a second opinion outside the UK, seek advice from someone familiar with the process and doctors available in your country, for the USA I’ve included some thoughts in this piece helpfully shared by Adrian who is much more familiar with those systems than myself.

Many of us will have heard of the concept of seeking a second opinion, but if you’re anything like me you’ll be used to trusting that your doctor knows what they’re doing and certainly that they know better than you do. For the most part seeking a second opinion is not something you’d often consider, for fairly routine health concerns there’s not a lot to question for most people going about their lives who run into something like a minor infection or even a broken bone you have trust in whichever doctor you see to know just what to do about it.
Even when you’ve been given a cancer diagnosis, which is probably one the most life changing things you’ll ever experience and it certainly was for me, that trust in your doctor is still there. I mean they’re a doctor right? They have years of training and experience and they’re the experts.

Well maybe, but then maybe not. Even if you’re dealing with a haematologist, it’s important to remember that there are many kinds of blood cancer and your particular doctor’s knowledge and experience of your specific cancer may not be all you’d hope. Do they really specialise in it? Are they fully up to speed on the latest research and available treatments?

Just as important as how knowledgeable your doctor is, is your relationship with them, their “bedside manner”. Do you feel comfortable with how they’re explaining things to you? Do you feel they’re keeping you as informed as you would like and telling you what is being done and why?

Of course, if you have concerns then you can and should raise them with your current doctor, if you feel able to do so. But if the answer to any of the above is no, or you feel like it might be, then maybe it’s time to seek a second opinion.

Here in the UK there is specific legislation in place to allow for patients to make choices about their care, in the form of the Patient Choice Framework details of which can be found here https://www.gov.uk/government/publications/the-nhs-choice-framework

It is possible, or even likely, you may not have been offered a choice during your cancer diagnosis. This is because there are specific exclusions within the framework for when you can’t or won’t be offered a choice, one of which is for urgent referrals for suspected cancer (see section 3 of “The NHS Choice Framework: what choices are available to me in the NHS?” at the above link).

But this doesn’t mean you can’t, or shouldn’t, seek a second opinion if you feel you want or need one. It may feel strange to do, but it’s important to advocate for yourself and ensure you are getting the best possible care and that you feel comfortable with the care you’re getting.

From what I have been told, in the USA a lot depends on the type of insurance you have. It can often be possible to choose which doctor you see. Or you could perhaps pay for a single consultation (ensure the doctor is happy to simply review existing tests if you are paying out of your pocket as even some of the blood tests can cost thousands of pounds! But if you aren’t able to get a specialist there may be a charitable scheme that could help you get an appointment with a specialist. If your diagnosis is CLL or SLL the CLL society run such a scheme which gives a free web based opinion from a top expert which can be invaluable.
https://cllsociety.org/cll-society-expert-access/

The Leukemia & Lymphoma Society (LLS) have a Co-Pay assistance scheme that covers a variety of blood cancers. An expert opinion can be particularly helpful when you or your doctor is beginning to think treatment may be needed soon.

Information on financial assistance from the CLL Society and the LLS can be found at the following links

https://cllsociety.org/living-well-with-cll/financial-assistance/

https://www.lls.org/support/financial-support

Seeking a second opinion is a situation I recently experienced for myself, having originally been referred to the haematology department at my local hospital via my GP. I became increasingly uncomfortable with my experience there as my consultant told me more and more things that made me question how things would play out, from me being his youngest patient, to being only one of about a dozen he’d treated with my specific markers, or being unwilling to talk about treatment or even what treatment he might consider for me “because of Covid”.

With encouragement from our ever wonderful Adrian Warnock, and some advice from some other group members local to me, I contacted my GP and explained my concerns and asked if I could have a referral for a second opinion. My GP was quite understanding and more than happy to facilitate my request, and after navigating some snags caused by idiosyncrasies of my local NHS CCG (Clinical Commissioning Group, the organisation which decides on and ensures provision of local NHS services) I was able to get an appointment with my preferred doctor at my preferred hospital and the difference in experience was night and day. The new doctor I saw clearly loves what he does, and has a reputation as an expert in the field. He was happy to chat at length about CLL/SLL and the various treatments available in general not just about my specific case, as well as discussing in broad terms when I might need treatment and arranging tests my previous consultant had not even mentioned doing.

The difference having a doctor so willing to positively engage with me on my care made to my mental well being is frankly astounding. No longer do I have to worry that I’m not getting all the information, or that I might have to fight for or not get a choice in how and when I am treated.

Remember, it’s important to advocate for yourself and ensure you’re getting not only the best possible care but also care you’re comfortable with. If you need more advice on how and/or when to do this then there are many members of our community who would be happy to help.