CLL Support Association
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iwCLL 2013: My Advice to Patients about their Therapy and How to Talk with Your Doctors: Shared Decision Making

Hi friends

I just posted a very short interview with yours truly by my friend Andrew Schorr on how to approach your care in this time of much promise, but still no no new therapies outside of clinical trials.

It is all about a shared decision making process


Stay strong


6 Replies

Thanks Brian, and you are so right when you state ' Shared Decision Making '....

Hey after all it is MY body, so I reserve the right to say what anyone does with it..!!

I did once criticize a doctor and suggested he should have been a vet dealing with so called 'dumb animals'..!!

I never went back to this doctor ever again; he was mighty annoyed and wrote a stern letter to my next doctor demanding that he hand me back under his control....!! He was what I call ' an old time family doctor'...

But also Brian is right in his video when he says that we MUST become educated patients.

My haematologist was on holiday; I ended up seeing a temporary doctor at the hospital and it was soon obvious that his knowledge of CLL was not great. Perhaps he was expert or trained in CML or some other blood cancers, but CLL was not his speciality. Since he was only temporary I just remained polite and left as I already had my blood test results and knew what they meant.

So Brian's short video has some important messages for all who read the contents of this website / pages/


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Thanks Brian,

Very topical for those that know that treatment is coming soon and are wondering what they can do to 'bridge' the period to when new, non-chemo therapies are hopefully available.


Many thanks Brian for a great video, and wonderful blog.

Was also interested to read your post on the 17th on the red blood cells and macrocytic vs microcytic.

It's an education.


Hi I think I would like more guideance from Dr's/hospitals as to how to talk about CLL. I don't want to be that patient who tells a consultant what their job is but unless you are pro active you can easily get side lined. I would like advice as to discribe symptoms. Also a ten mins consultant is the norm. I like each and every second of that consultant to count. Best regards


Good points. I believe if we are not proactive or if our doctors can't handle it, we risk not getting the best care. I have dumped docs who didn't listen.


Thank you Brian

Very helpfull video. Hopefully more of us will be approaching our hematologist, better informed and ready to discuss our particular situation, without feeling our input is of no value. I personally make short notes of what I need, or want to know as I know it will go out of my head when having my allotted time with the consultant. As your the video says, they are likely to be more in tune with the more common cancers, but we need to be heard. I have always been satisfied with the consultations which follow my blood results.

Much harder for those who require treatment with very little time on W&W to learn about CLL.

I smile though, when I consider what reaction I would expect to a GP who can elucidate on the subject against a pensioner and her notes. :-)



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