Hematologist questions

[Smoothie2020]

I have ET JAK 2 and I always feel like the dr is rushing me when I see him. He looks at my numbers, reviews my prescription and then stands up and walks towards the door. I want to make him stay for at least 15 minutes so what are some standard questions you ask your hematologist when you go in for a visit? I’m asking for my MPN referral at my next appt.

[hunter5582]

Feeling rushed is a chronic problems for both doctors and patients these days. If I know I have a lot to cover, I schedule a 30min appointment rather than the usual 15 in advance.

I always go to appointments with a written agenda. I give the doc a copy. It helps to organize the appointment and is much more efficient for both of us.

Here is what the outline looks like,

Treatment goals:

Define what your treatment goals will be. Include quality of life, extend/preserve life, and other priorities. Define what constitutes quality of life. Rank order your goals.

Treatment Approach

Define what you preferred treatment strategies will be. Do you want to include complementary health interventions? Do you want to consider clinical trials? What level of evidence do you wish to see? Include MPN-expert consultation on your care plan as mandatory. Require holistic care from all providers, including specialists.

Updates on Health Issues & Questions

List everything so docs are aware of all that is going on. Even when it is not “directly related.” Specific Issues & Questions relevant to this appointment

Treatment Options/Recommendations

Review Risk/Benefit analysis of ALL options, not just the one recommended.

Not sure what insurance/healthcare system you are in. A referral may or may not be needed. It is absolutely worth the effort to consult with a MPN Specialist. Your current hematologist should support you seeking another opinion from a MPN Specialist.

All the best.

[Smoothie2020 in reply to hunter5582]

Great! This is good info.

[Spanelmad in reply to hunter5582]

Thankyou so much Hunter for this great appointment format just what I needed to know at this point in MPN journey.

[ainslie]

In addition to what Hunter has written you could start the consult by explaining that feel you need a bit more time with him because you have questions etc. Not all patients ask questions or understand their MPN so are in and out. His job is to answer your questions, asking 15 minutes is very reasonable. You and your MPN are important and if he can’t give you the time you need I would be looking for seeing someone else if possible.

[Smoothie2020 in reply to ainslie]

Yes I don’t like the rushed feeling. I rescheduled one time and met with his PA and she was not rushing me at all.

[LT55]

Sorry your doctor is rushing you...not good!

One quick comment/question about asking for a referral to an MPN specialist. Is your current doctor a hematologist? If he/she is a hematologist, then it can be a bit tricky. All MPN specialists are hematologists (at least I think so!), but not all hematologists are MPN specialists. And there really isn't an "MPN specialist" designation (i.e., it's not quite like asking a GP for a referral to a hematologist). Being an MPN specialist is a bit subjective - though there are many in the field where it is quite obvious this is their specialty. I guess what I am trying to say is: if you ask your hematologist for referral to an MPN specialist, they may not truly understand (i.e., you are already being treated by a hematologist) and/or they may be offended (not that it really matters!).

Ideally, you should research MPN specialists in your area (several sites have lists that are not necessarily completely overlapping). And then make an appointment on your own (or ask your GP for a referral). Just my two cents!

[Smoothie2020 in reply to LT55]

Good idea. I’ll just check my insurance and see what MPNs are covered and see if I can schedule on my own.