It seems to me that there's a reluctance to ask for a second opinion when it comes to the time when our specialist says it's time to treat CLL. Is that really the case? I would have thought that with CLL, where frequently the best treatment option is not to treat (Watch and Wait), more people would seek a second opinion, particularly when the condition is so heterogeneous.
What do you think?
Neil
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AussieNeil
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I was extremely reluctant to seek a second opinion, due to my British sense of rudeness and manners. My boss insisted that I do so, however, and I feel much better about the whole thing. Currently waiting for second opinion. Boss paid (unnecessary private) consultation fee.
I would recommend everyone does so at the point of treatment. Two heads are better than one, surely?
Good on your boss! I'm sure that your reasons are very common. It's natural to feel that seeking a second opinion can be seen as insulting to your consultant, but perhaps if we see it as a means of reassuring ourselves and a process that will often strengthen our appreciation of the skills of our specialist when we get the same advice from a second opinion, then we'll feel less reluctance in doing so. Then as you say, two heads are better than one and getting a second opinion may result in a slightly modified treatment protocol, maybe still under your first specialist, due to the greater breadth of experience from those two heads. I expect that the heterogeneous nature of CLL and its relative rarity would make having access to 'two heads' even more valuable for us!
This is a good question, and it's a very important area for our community. I was brought up by parents who were deferential by nature to their GP, even when he plainly did not advise them well. I was dismissive of such deference and remain so with regards to GPs, but when it comes to a specialist; well,that's a different matter.
Many of us have had no experience of specialists, prior to CLL, and perhaps this is where the problem lies. I have great respect for specialists and found it very difficult to challenge them (although it was done very deferentially). The specialist, however, couldn't have been nicer about it and actually called it "my right". She said "it was my disease and my decision".
I have chatted to at least one other person on here who had no problems with a second opinion, and now I have made the decision I feel hugely liberated.
Please try to bring this post to as many other's attention as possible.
I had the benefit of two specialists having moved from one area to another. Both were and are excellent. Where I am now there is a sta. ffing level of 4 consultants and although you re under the care of one in particular you can and are seen by any of them but the final decisions are discussed and your own consultant makes the final decision with you the patient.
I feel that I am getting excellent care and treatment (currently being monitored every week) as my treatment continues.
So I must state that for many it may be a good idea to get a second opinion but for me I did not want to for the reasons stated above.
I feel that if you request a second opinion (through your GP) from a consultant on the NHS there is no guarantee that you will get the "top man" ,rather one of his staff.
However,if you go private you see the man who you are paying the money to !
Hi I initially saw an ordinary consultant at my local hospital. I had no complaints about either the care or treatment from them. However I requested to be referred to a specialist due to my age ( I was 50 at the time) also because I was female. My local hospital could not have been nicer. When I saw the specialist I was asked to donate blood for research as from their prospective I was an interesting patient. Always ask yourself if you were a Doctor where would they make sure they were treated and cared for?
I am seeing a CLL specialist and when my labs jumped dramatically in 4 months I asked for a consultation with the CLL specialist at Stanford. The two docs don't agree on treatment/time frame. Mine says continue with watch & wait, Stanford doc says treatment within the next year, start exploring options. I went to National Institute of Health (NIH) to see what they think and trial options. They have a trial not yet approve to recruit that I would be eligible for but they don't think I can wait for approval expected by end of 2015. I've now schedule an appt with Dr Sharman in Oregon for his opinion. Sometimes one needs more that a second opinion...a 3rd or 4th works too. It's been a busy year!
Last August 2014, I received the the results of a biopsy and a new fish test noting that I now had both 17p and 11q deletions. I think because I have been a patient who was constantly asking clarifying questions over that past two years, my local oncologist did not hesitate to send me to a Stanford CLL expert (Dr. Coutre) for a second opinion. He said himself that there are only a few of us with CLL in his practice. Dr. Coutre was skeptical about my results and retested me and found them to be wrong…who would have ever thought?! So while I surely have progressive disease, unmutated with a 13q deletion…I am not ready for treatment yet…ALL due to s second opinion from a CLL expert.
I agree with Zentangle. I would fear appearing rude. However, it's my life at stake and I think if I needed the re-assurance that a second opinion would bring then I hope I would have the courage to ask.
I definitely got a second opinion before starting treatment. I highly recommend it as well. But, if you get two different opinions treat vs. nontreat, now what to do? Who's right?
This is thankfully still hypothetical for me; how did your two opinions compare?
If both opinions are offered by specialists familiar with treating CLL, I guess you could ask the Treat Now Specialist "Why now specifically?" and the Non-treat Specialist "What did they think would trigger the need for treatment?" and use the feedback to decide which recommendation is right for you.
There's generally a fair amount of latitude on when to start treatment, but from what others have said, you don't want to leave it too late.
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