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DiscussionPossible upcoming lymphoma or leukemia diagnosis. What to expect?
Blood Cancers & Disorders | Last Active: Dec 28, 2023 | Replies (37)Comment receiving replies
Replies to "Hi Lori, I am seeing the hematologist on November 21. I'm a bit of a nervous..."
Hello @reginaf,
How was your application with the hematologist?
Good morning. As I read your story it does remind me of my journey. As you say, we’re not doctors, and hopefully you’ve been given a diagnosis by this point. My cancer is Splenic Marginal Zone Lymphoma - (a B Cell lymphoma) with a slightly enlarged spleen and high WBC numbers. It was not fully diagnosed until after a lumbar puncture. Not fun but the team was fabulous and I finally had a diagnosis. Like you, I have no other symptoms and am on a wait and watch protocol. My doctor orders an ultrasound yearly and bloodwork every four months. To be honest - it could be much worse.
I’m thinking of you and hoping you get that diagnosis through which you can begin adjusting. This is a good place to reach out for support
Good morning @reginaf. Opening day jitters…that’s the first thought that popped into my head this morning when I read your post. It’s the same feeling of nervousness and uncertainty that an actor has before walking on stage or a new business owner has when the doors open for the first time and a patient who is waiting to see a new doctor for a potentially life changing diagnosis. Facing the unknown isn’t an easy thing for any of us. But I think you’ll be a little more relaxed when you finally have an answer and can move forward.
There’s a helpful discussion in the forum on how to get off to the best start with a new specialist. I thought that might be a good place for you to gather some thoughts. Make sure you write notes of questions you may have.
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?pg=1#comment-240765
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I’ve also posted a few questions you might want to ask your new doctor. They may not all be appropriate for the first appointment but it gives you some idea of what to ask.
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What do you think is causing the symptoms I'm experiencing?
What tests will be involved in determining the cause?
Is there any pain, discomfort or side effects involved with these tests?
What is the likely solution or treatment for the problem?
What side effects does the treatment have?
What are the chances that my treatment will be successful?
What will the treatment cost? Will it be covered by my insurance?
Can my condition be cured, or is it something that I will have to learn to live with?
What lifestyle or diet changes should I make in order to improve my quality of life?
If I have other medical conditions, how can I manage those, as well?
What kind of follow-up appointments can I expect?
Do you have any good sources of additional information on my medical condition?
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I know that you’ve had losses in your family from cancer and that can’t help but enter your thoughts…been there myself. The most important thing is to not dwell on what if this happens to me. That causes so much unnecessary stress, worrying about things over which you have no control. IF something is amiss, THEN you will face it head on and take care of business. It’s a much less stressful way to live. So take a deep breath, hold for 4 seconds then slowly exhale.
Do you have someone who will go along to the appointment with you?