What questions should I ask my doctor at my first follow-up?

[goyo457]

I was diagnosed with CLL a couple weeks ago and the results of my initial blood tests are in. I probably know enough to be dangerous at this point but, from what I can tell, they are mostly favorable with the exception of unmutated igvh (I think you should be able to see the results in my profile). I'll be meeting with my doctor in couple of days and it will be the first time we've met since the results came in.

I do have some questions written down but I'm curious what questions others may recommend. Any questions you would recommend I ask? Any topics of conversation that I should throw out with him? Are there things you wished you had asked but didn't? Thank you!!

[BigfootT]

Goyo457, If your doctor is a specialist in CLL I would likely get their thoughts on follow-up schedule and maybe your IPI. I suspect you'll be low risk. If they're more a general oncologist don't be surprised if the conversation focuses a bit more on the unmutated IGHV. The non-specialist I saw viewed it as a very negative prognostic marker because it didn't react to FCR well. The specialist I saw next viewed it more as a challenge that will likely just drive more aggressive progression, but not a dire problem we can't overcome.

Bigfoot

[Big_Dee]

Hello goyo457

Welcome to good place to find answers and lower your stress level. Your unmutated IGHV is not a big issue until "if and when you get close to treatment". Primary concerns now are tracking your blood test results to determine trends. Things you need to know now are how often you will have blood tests and examinations. You may have some questions on lymph nodes and spleen size. Doctors should be checking these items and commenting. Blessings.

[goyo457 in reply to Big_Dee]

Thanks! He checked them at my last appointment and all was fine at that time.

[FiArt12X]

CLL is an unusual cancer that in most cases does not get treated immediately like other cancers. Usually, you will enter a phase that was named “Watch and Wait”, many are trying to change that to Active Surveillance. This includes blood labs every year, 6 mos,, 3 mos maybe even 1 mos. Depending on your initial results and concern as to the disease progression. I would anticipate you have a lot of time and will be on the longer periods. Yet, that is certainly for a professional to determine.

As mentioned by a previous participant, I would ask your (dr.-oncologist) their familiarity with this specific disease (cancer). If they say they haven’t had much involvement, ask if they could recommend someone. There are many more facilities, hospitals and universities with research hospital affiliated that are doing great work and making fantastic strides.

I would also recommend visiting the CLL Society site. They have a lot of great information.

[goyo457]

Interesting to hear your thoughts on the wording of "Watch and Wait." I wrote the CLL Society because I thought this was the most lame thing one could possibly call this initial period. "Wait" for what? I think they would say, "Well sir, wait for your cancer to get so bad that you have to treat it because, if they don't, you could be toast..." Sorry, but I'm not going to do that! I told them to change the name to "Watch and Live" or "Active Surveillance." For so many of us, we will spend a considerable amount of time wherein the psychological threat of this disease far exceeds the physiological threat. "Watch and Wait" is powerless terminology; it obviously point to the fact that something BAD is going to happen and you just have to wait for that. I'm sorry but sometimes I'm amazed by the stupidity of people who think up stupid names like "watch and wait" and then protect it from change because they are too smart to listen to others! There: I feel better now, thanks!!

[Skyshark in reply to goyo457]

Which is why it also has another name, Watch and Worry. Because we can't affect the progression I've been told by two doctors to let them do the worrying.

With IgHV mutated it's a fair bet that you will need treatment at some time.