This is my second post since being diagnosed and joining this community on July 2nd. I am so glad to have found this community! I have my first appointment with hematology/oncology next week. I have already had a FISH test performed which I will probably receive results from during my appointment next week. I wanted to ask advice on the questions I should ask at this initial consultation.
First Hematology/Oncology Appointment - CLL Support
I have a suggestion but it's not for a specific question to ask. My CLL doctor was very helful in providing education and checking that I understood what was happening and what would happen next. Hopefully you'll have a similar experience but I know that not everyone does. Hope for the best but prepared if it's not.
Here's my suggestion either way - If at all possible take someone reliable with you. They don't have to be close to you, they just need to be clear headed. You may get more information than you can absorb in in the appointment. My daughter was able to clarify and correct much of what I mis-heard or mis-understood later when we discussed it. Even if you're not nervous it can be a lot to take in.
Best wishes and I hope you establish a great relationship with the doc and feel more informed afterwards!
I also suggest recording the appointment. It really helps to be able to listen to everything again in a more relaxing atmosphere, allows family members and others close to you, who want all of the details, to hear what was actually said, allows you to add to / adjust your notes later, and allows you to be more engaged in the conversation while there.
I always ask for a copy of all labs before the doctor starts talking. Some won't allow patents to have copies until they are in the room, but you can alert the office staff so the copies are ready for the doctor to hand you. I need to be able to have a visual in hand while the doctor is rattling off numbers.
Start writing down any questions that pop into your head. The night before your appointment organize them in order of importance to you - most important first to be sure they are covered - and then make a second copy for your doctor. It allows him/her to see where your thoughts are and also to fill in information that you forgot or didn't know to ask about.
A good doctor will cover the basics of your case and answer a lot of your questions before you ask them. You will want to know what numbers are out of range on your lab reports (I scan for highs and lows and ask about those first. I assume that your diagnosis was made using a Flow Cytometry test. Ask what the results and the results of the FISH test tell the doctor about your case. Also ask if your mutational status was tested.
You might want to go to clltopics.org and read the article Three Important Blood Tests for a little background, so the language isn't so foreign before the appointment. Don't worry about not understanding every word for now. Just focus on beginning to learn the vocabulary.
The videos by Dr. Susan LeClair on patientpower.info about understanding your labs are also incredibly helpful. I go back and review both these every few years.
Let us know how it goes. If you will be posting personal information you might want to restrict future posts to community only (change the default at the bottom of the post from everyone). You will tend to get more responses to "locked" posts.
One question I would ask is "What are your criteria for beginning treatment?" I think that question is very helpful for two reasons: 1- you get to find out his/her answer, and 2- It can give you a hint if the doctor is a CLL specialist or a more general hematologist. A doctor with CLL experience should have no hesitation in answering the question.
Definitely bring someone with you and have them take detailed notes. In my first hem-onc appointment, the doc lectured me on the complexity of CLL, how no two cases are alike, and the importance of building a team of CLL specialists. He referred me to some of the country's top specialists and I got on a plane and went to Columbus, Boston and San Diego - it was the specialists who did further testing and refined my diagnosis. They didn't all agree as each has their own way of interpreting results, but my hem-onc plays quarterback, gets consensus, and leads the debate on treatment options. I went from presumed to be Stage 0, "probably" mutated and OK for watch&wait to confirmed Stage II, UNmutated and in urgent need of immediate treatment. Then I was about to start BR chemo when I got into a clinical trial with Gazyva and ibrutinib - much better - and am responding well. The point is you need as many opinions as possible from as many CLL specialists as possible as soon as possible. THEN the real questions begin. Check out the CLL Society website for a list of specialists nationwide and review this with your hem-onc.