First hematologist appt tomorrow

[Pat351v]

I see a hematologist tomorrow for the first time. I feel anxious. I feel absolutely fine but my wbc is 42.6...what should i expect from this appointment? Thank you

[MsLockYourPosts Passed Volunteer]

Pat - Take a recording device / use a phone app at the appointment. It is really helpful to be able to listen to everything a second time when you get home, and it allows you to be more engaged in the conversation during the appointment.

Write down any questions you have with space to add notes under each one at the appointment or later. Then make a copy of the same list for your doctor. That way he /she can get a quick idea about your concerns and can add information you should have, but haven't listed. I find that it works best to have the questions that are most important to you listed first so they aren't missed.

I don't worry about seeing labs before the appointment, but I want them done before, and want a copy in hand while the doctor is going over them. I have all of my doctors trained now. They walk in and hand me my lab reports right away. I don't process discussions about numbers without being able to look at them, and I can make notes about labs on the report.

42.6 is not terribly high. There are people in the 100s who are otherwise doing well. Follow your absolute lymphocyte count (alc) over time - not the percent. That number tells you more about what your CLL is doing, but you and your doctor will want to see what your pattern is, not just a single count. Your doctor should tell you about other counts or symptoms that might be of concern down the road, if any. Hopefully you will fall into my favorite category, boring patient - someone with stable numbers and no real symptoms.

Let us know how the appointment goes.

[Pat351v in reply to MsLockYourPosts]

Thank you...i appreciate these words of advice

[bhayes84]

Keep in mind that CLL is a usually slow moving disease, especially at the beginning. My ALC was 98, that is 98k, when I was diagnosed a year ago and we didn't start treatment until it was at 390 three months ago. So it could easily be a year or more before they even begin to start discussing treatment options.

I would guess most of the first visit will be just discussing what's known about CLL and what blood tests they might want to run sooner or later to monitor your situation.

And remember there are lots of people on this site to share your questions and concerns with.

Let us know how it goes.

[Kathp]

Hello Pat351v

I am a little less than you in numbers and fairly slow moving I believe. I was diagnosed in Oct 2018. My haematologist has the bloods done first and he goes through the results there and then - and I get copies sent to me so I can plot the changes. I think taking a recording advice is a good idea; I have a book I add my questions to and go through them at the appointment , jotting down the replies.

I find it helps to take my husband with me as he remembers things I’ve forgotten. I hope you are like me - no action required as yet, wait and see... over time I have relaxed a little bit I do have to say that it took a while to take in the diagnosis but now I feel in control - if that’s possible!

Looking forward to seeing how you got on. X

[Pat351v in reply to Kathp]

Took blood draw and i see her again sept 6th for official diagnosis. Shes 99% sure its cll

[Kathp in reply to Pat351v]

Thanks for the update Pat351v, well at least you have an idea now and have some time to get used to how things will be. This forum will be invaluable for so many reasons. Good luck on the 6th. We all react differently and I think it took me a few months to accept my life from now on would be quite different but as time has gone on I am looking after myself better and exercising more. I do think it has helped! x

[Pat351v]

Thank you so much. I am anxious but can handle this!

[GMa27]

Good luck!

Hopefully you will be on W&W long time. After 12 years, I just started treatment.

Glad u found us!

[Hidden]

Pat your WBC is right about where mine is. There are many who have 10x those numbers.

Seeing a Hematologist for the first time can be nerve racking, comforting, or something else entirely. My first Hematologist appointment after hearing Leukemia lasted 5 minutes...that She-Ogre answered nothing, basically ignored me told me to get blood taken for a FISH panel and she would call next week with the results. A month later I was still waiting for that call. I got rid of her fast and went about finding a Hematologist I felt more comfortable with. I have been seeing my current Hematologist for a little more than a year...and I love her. She spent an hour with me on my first appointment, answering every single questions I had.

If you read my posts/replies you will find I am not a big fan of whitecoats in general....but I am a HUGE advocate of making sure you find a good one. Always remember, when you are in a room with one whitecoat or 1000 whitecoats....the most important person in that room is you. Not them. They forget that frequently in my opinion. Do not be afraid to to question them or say "Hey wait a minute, you need to explain that better." They are there to help you make choices...not make them for you....and they forget that sometimes too.

I hope you get a great Hematologist right off the bat and have a great relationship with them.

Scott

[Pat351v in reply to Hidden]

Scott, thank you.