What Can I Expect From The Hematologist?

Good morning, @skizzard First thing I’d recommend is to stay away from Dr Google. It’s so easy to get caught in a rabbit hole of what ifs. We’ve all been there. ☺️ Right now there are many possibilities that may or may not be related to leukemia.

As for your visit to the hematologist, they’ll talk about your symptoms, when they began, if you’ve recently been ill, had covid, been to any tropical area, etc. It’s like solving a mystery so there will be a lot of questions. Be open and honest in your answers.

A more in-depth CBC will be run and probably a peripheral blood smear looking for blasts, which are immature white blood cells that should not be in the blood, The lab would check the size and shape of blood cells, looking for any anomalies.
Depending on the results of these tests, the doctor may also request a bone marrow biopsy to get a more definitive picture of what’s going on with you and your blood, to see if your symptoms are related to a hematological problem.

They may have tests run to check for Lyme disease and latent viruses such as CMV, EVB or HPV, because these viruses can also cause some of the symptoms you’ve been experiencing.
You mentioned leukemias developing rapidly. Yes, some forms of leukemia come on like a speeding locomotive and are considered acute, requiring immediate intervention. But there are also some types of blood disorders which can be very slow to develop and considered chronic. But we’re way ahead of ourselves here.

First thing is to meet with your hematologist. There’s no need to have a white coat syndrome. They’re part of your medical team and there to help you.
Have your list of questions for the doctor. Though, at the first appointment, he/she will most likely have more questions for you than you will for them.

But you could ask what some of your blood tests are for, what the current numbers mean, what trends do they see in your numbers. Also make sure you take along all medications that you’re currently using.

Here’s a discussion in the Connect forum about how to get the most from a visit with a new specialist. You might find some great information from other patients to give you a head start.
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist

If nothing else, the hematologist will certainly rule out many possibilities.
Do you know what’s causing your weight loss that required the medication to reverse the condition?

@skizzard Welcome to Mayo Clinic Connect! As @loribmt mentioned, please don't get yourself in to a whirling circle of anxiety. So many of us have done that, and it serves no good purpose.

I don't know when your appointment is, but I do have a suggestion. Take time now to calmly write out the symptoms you are experiencing. Being detailed will help everyone. Be sure to include your living situation, who you have for a support system at home, etc. Write out what you follow for a diet. You are going in to a new doctor, a new specialist, and the more information they have to form a clear snapshot of you, the better. Besides that, you may uncover a pattern to your symptoms. You never know when a small thing to you is a telling factor! After you are finished, make a copy so you and the doctor can refer to the same information.

Then, take some deep breaths. Get outside and breathe fresh air. Go for a walk. Know that you have this handled, and are being proactive. Congratulate yourself on reaching out for answers. Do you have any other questions for me?
Ginger

Thank you so much Ginger! Sorry I took so long to reply - I wanted to wait until my appointment before I asked any more questions. Unfortunately my doctor sort of rushed me out the door and didn't really bother to look at the list of symptoms I had, but he did order a whole bunch of tests. I have a short list of them but there's lots of abbreviations and it's very technical and I can't quite decode it. Is there anywhere I can post or call or otherwise contact to find out what they are? They took 14 vials of blood and there seems to be about 8 tests. He mentioned testing for CML, lupus, autoimmune disorder, mono, and some other stuff I don't remember, but he didn't tell me what they were or how they worked, which I'd really like to know. He said some could take up to 4 weeks. I'd really like to know what tests typically take how long to be done so I'm not caught off guard by a phone call if they do find something.

I really appreciate your help, thank you so much!

As eager as you are to find out what dr is checking for, do not start googling all the various diseases. I know that is your first impulse, but you will just increase your anxiety if start looking at all possible diseases.

The test are to find what might be causing your problems and also to rule out other possibilities. Just because dr is testing for something, does not mean you have it. When you look at symptoms of some of things he is testing for, they are very similar. As an example, fatigue is a symptom of many diseases.

How long to get test results depends on your clinic. Some clinics send the blood to other locations to get tested, that is why it could take weeks. So depending on a remote's lab turnaround time, it is hard to estimate.

Four weeks seems like long time for results, so hopefully you will get a call sooner.

Does your clinic have an online portal to look at test results or dr's notes?

Laurie

Hi @skizzard I’m happy to look at your blood test list If you’d like. You can post them here, just don’t include any personal information. Or you can send me a private message if you’d rather.
I know this is a very trying time, waiting for results and not even knowing what most of them are for. I’ve had a lot of experience with bloodwork over the past couple of years would love to help out if I can.
You mentioned a possible phone call, but do you have another appointment to go over results with your doctor?

@skizzard I echo what Laurie @roch said in her comment. She is absolutely correct! I have to admit I would be like that, too. Wanting to have all the test names and such. Fourteen vials of blood! Did you get orange juice and cookies afterwards?!

Most of the time I have my blood work pulled by a commercial lab. Their protocol is that they will not release the lab results to you until your doctor has reviewed them. My former nephrologist wouldn't review until the last minute, so I never knew what I was walking in to at an appointment. My current nephrologist reviews the results right away, so I get a quick report back to me. And remember, there being many different tests, your doctor will be combining results and looking at patterns. That is what they are trained for.
Ginger