Hi @sherda, Welcome to Mayo Clinic Connect. We have a large group conversation in our forum with other members who have gotten information ahead of their doctor’s appointment to discuss a diagnosis and treatment plan. Sometimes it can be a godsend and other times, such as yours, it just serves to build anxiety until you can talk with your doctor.

Here’s a link to that discussion if you want to commiserate with other members. Sometimes it helps to know you’re not alone in the anxiety of waiting.
The Patient Portal: Help or Hinderance. https://connect.mayoclinic.org/discussion/the-patient-portal-help-or-hindrance/

I am sorry that you’re having to wait for such a critical diagnosis. Having a blood disorder is scary but I hope that I can bring you some reassurance. I had a very aggressive form of leukemia and it also required a bone marrow transplant. I am now coming up on 3.5 years post transplant and feeling fabulous.
From what you’re saying about the tests is that your doctor is trying to narrow down the type of lymphoma that you may have and that will dictate the treatment.

The PET scan is useful in determining the involvement of the disease in the bone marrow. The bone marrow is the central blood manufacturing site in our bodies and when that becomes diseased or malfunctions our immune system is compromised. Depending on the diagnosis, sometimes an option would be replace the defective bone marrow with a bone marrow transplant/stem cell transplant. Thereby giving the patient an entirely fresh start. Like a reboot!
It’s an arduous journey but one well worth taking if that is a practical option.

Things to talk with your doctor. Honestly I would let my doctor do the talking first and jot down things as he/she speaks. It’s hard to ask relevant questions when you don’t yet know the full diagnosis or the potential courses of treatment. Don’t hesitate to ask questions of your doctor during the video chat after each point.
If you can have someone with you that can be helpful too, so that you’ll be able to listen and they keep notes of what the doctor says. My husband was most helpful when it came to being my ‘sidekick’ at all my appointments.

But some basic questions you might ask:
Will I need more tests?
What are my treatment options?
What are the potential side effects of each treatment?
How will treatment affect my daily life? Can I continue working?
How long will treatment last?
Is there one treatment you feel is best for me?
If you had a friend or loved one in my situation, what advice would you give that person?

You’re not alone in this journey. Let me know what you find out next week, ok?

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