What to ask The Haematologist

[Stew64]

I have my first meeting with a Haematologist on Tuesday..What are the important questions to ask...I'm so anxious that I might not have the focus to think..

[MistyMountainHop]

Hi Stew64,

I'm sure there will be good advice from more experienced folk, that will help with the relevant questions to ask.....What I would suggest is, that you keep a pen and paper with you, at all times. Write down any questions that you might want to ask.

Good luck.

[MisfitK]

Before I take a shot at this, I assume you do not yet have formal testing done which confirms a CLL (or other blood cancer) diagnosis? This is just your "meet the hemo onc and get the tests ordered, so he can later give me my firm diagnosis"?

[cllady01 Former Volunteer]

What you want to know right now is, of course, what is going on in your blood and bone marrow. Bone marrow is where our blood cells develop, so that is an important area to be explored for some blood diseases.

With CLL, there may be a bone marrow biopsy (BMB) at some point, but it is not usually in the mix of tests for a diagnosis. However, it may be done--Drs. have their own agenda within a scope of the body of testing they do in diagnosis.

The initial meeting with the Hematologist will be blood tests and a physical examination as well as the Dr. asking you questions regarding any symptoms you have been having and any illnesses/conditions you have or have had. Feel free to ask how what is being asked applies to the exploration of your situation.

You may be scheduled for a BMB, depending on what the examination reveals to the Dr. If so, and you want more info, ask how that test is important in the search for a diagnosis.

You will most likely have a 2nd appt set to have the test results reviewed and that will be a time you will most likely have some questions from what is reported on the test(s).

I am just suggesting before the fact of CLL/SLL diagnosis the questions most often are "What is going on here? " And then if during the exam, Dr. is one who is less talkative and does not say why he is probing your left side or checking your neck and ankles, you might ask what he is looking for.

Do feel free to talk with the Dr. and let him know you want to know how, why, what, when and be a partner in your healthcare.

[CLLerinOz Administrator Volunteer]

Hi Stew

As I understand it, your diagnosis of CLL hasn't yet been confirmed. Have you already had blood taken for immunophenotyping to be done? If so, you will probably get the results of that testing at your consultation and will then know what you're dealing with. Otherwise, your specialist will order that be done and it may be a little while longer before you know the outcome. If you do have CLL, you may also have to get some blood drawn after this upcoming appointment for additional testing and that will also tell you and your specialist what particular variation on the theme of CLL you have.

Here in Australia, we're not always routinely given printouts of our test results so I always ask for them and receive them without any trouble if I ask. I just can't get them in advance of my consultations.

Our parent UK organisation, CLL Support, has some helpful advice about the questions you might ask your care team when you first find out you have CLL.

cllsupport.org.uk/informati...

I found it helpful to get a notebook to take into my early consultations and I often still use it, over six years in. That way, I can jot down any questions I have in advance and can make sure I have discussed all of them before the consultation ends. It also helps me to write down things that are said during the consultation that I don't want to forget. Having someone else there with me (if Covid protocols allow for that) can also be beneficial as we often hear things differently or miss things that are said when we're stressed.

All the best for a supportive and helpful consultation on Tuesday. Let's know how you get on.

[julieS3]

Hello my routine for all my Dr appointments are to write my questions down before hand. If this is your first visit as ask him why your blood counts have brought you there and if you can get a copy of the blood work. It’s really good to know your progress as you go forward. Also if they are taking blood that day and doing more tests to ask them the name of the tests they are taking and what they will tell you/ him. The suggestion of recording the visit is a good idea. If not bring pen and paper. Write down all your symptoms beforehand also. I hope this helps.

[LeoPa]

I would ask whether it is okay to record the conversation because by the time you get home you will forget most of everything that you hear.

[MisfitK]

Okay, since I haven't seen your response, I'll go with my 1st gut thoughts and assume this is pre-formal diagnosis and testing.

So, in a "concept sense", for the 1st meeting, it's less "questions you ask" and more "info you offer." You want to share with the doc everything that has brought you to him in a "highlights" kinda form and you want to bring copies of any records you have from your other doc that shows why you're there (I brought the blood work results that caused my original referral, so the new doc could see trends right away as he did another blood test that day). So, if you have fatigue, nausea, low appetite, unexpected weight loss/gain, constant infections, slow heal time, etc, etc, etc...or if you truly are just there b/c your bloodwork came up bonkers.

After you get the doc up to speed, you want to know his/her next steps/recommendations and timelines - what tests will be ordered, when will you get them scheduled, when does he/she think he can have a firm diagnosis, and even maybe "what is his gut call on what may be wrong with you" or "how concerned you should be" (my doc was a little noncommittal when I asked this the 1st time, so US docs may not share til they know).

And you also want to know the best way and the fastest way (not always the same) to contact him/her between appointments or if something goes haywire with getting everything the doc wanted done.

Good luck at your appointment, and if you just do the last thing, you can always forget absolutely everything you need to say/ask, and just share it after/between appointments. My doc and I have an email stream, so I never worry if I forget something. Reason #4725 why it sucks he's retiring next fall.

[Stew64 in reply to MisfitK]

Thanks for this..yes recent routine bloods have indicated wcc and leukocytes increasing.Follow up immunophenotyping indicate low Tcell and high Bcell with high lymphocytes and high absolute number.

I see Haematologist Tuesday and cannot stop the anxiety

[SofiaDeo in reply to Stew64]

FWIW, pathologists can often tell just from looking at a blood smear, if there is *something really serious* going on. The fact that you have an appointment scheduled out a week or so, means *nothing looks really super dangerous/serious* or they would have you in sooner. I happen to have a really aggressive CLL variant, I had awful symptoms sending me to the doc, and I was seen by a hematologist within *days* due to my symptoms + how my blood looked on a slide. For me, bloodwork late Monday, results on Tuesday to my GP, with him making calls in to the hematologist, in there Friday first thing early AM. Please try to relax, if this was looking very serious you would have been seen ASAP IMO. The fact that you were scheduled out a week, and this just happened to show up during routine testing without symptoms, most likely means there is nothing urgent going on.

CLL is technically classified as a "leukemia" because the cells don't die like normal lymphocytes do, but it's also classified as "chronic" because whatever is going on, isn't happening fast/urgently. I assure you, if you happened to have an urgent type of leukemia emerging, it shows up on your blood tests and on the slides. Please try to calm down a bit, it's hard, but knowing they didn't rush you in means it's not super serious, whatever it is.