Results of biopsy

[JerrysGirl3]

Biopsy of node on jaw determined to be SLL/CLL. See attached. Happy to find out. Now I can talk to doc about choosing to start meds.

Thanks everyone for your personal stories and support ❤️

Kerry

[LeoPa]

CLL as good news! Everything is just a matter of perspective 🙂

[JerrysGirl3 in reply to LeoPa]

And hearing back from the doctors (CLL and Endo), which I have not.

[Ptown]

Hello JerrysGirl3, it sounds like it is a big relief for you to know your diagnosis and to begin your plans to manage your CLL. Knowledge is power! Please let us know how you are getting on as we stand at the ready to support you. Best, Carolyn

[JerrysGirl3 in reply to Ptown]

Still waiting for CLL doc and Endo to go over it with me. Not happy. I never get responses from any doctor. It's not funny now that my CLL doc is talking treatment but not getting back to me.

[Ptown in reply to JerrysGirl3]

Oh dear! What a frustrating situation. I hope you hear back soon.

[SofiaDeo in reply to JerrysGirl3]

IDK where you are geographically, but I get local test results posted in my patient portal, and the docs do their comments 24-72 business hours afterwards. Our local healthcare system is pretty stressed out, the hem-oncs have to do double duty in the main hospital as Intensivists. The primary care doc doing my BHRT and ob/gyn usually posts her comments 2-4 business days. I can send a message with questions, and they have gotten back to me in 2-4 business days.

My CLL specialist is a different system. Results get posted, but he doesn't comment until the next visit. I have not had any "questions" so IDK how that system handles these things.

I pay for a boutique medical practice model in the US, MDVIP. Questions get answered within the day, and I can be seen urgently within 24 hours. But this costs a little over $100/month and isn't covered under insurance, although the doctor visits and tests, etc. are covered. This is only for primary care, not CLL or any other specialist unless they happen to be a mixed primary care/specialist. As part of this yearly fee, I get a yearly intense set of tests....bloodwork is sent to the Cleveland Heart Lab for cardiac risk analysis, hearing/eyesight is tested, bodyfat and bone percentages are checked, and they have other benefits. In addition to fast, easy doctor access.

When I was being diagnosed, things were discussed only in person at visits. When is your followup from the testing?

The only time I have ever had a callback within hours of test results posting, was when it was thought a life-threatening process was going on. So unless something potentially life threatening appears, I doubt the docs will "reach out" before a scheduled visit. Or possibly return a call, if the message is "I want to talk about my results", you have to wait for the appointment.

[JerrysGirl3 in reply to SofiaDeo]

The CT scans were over two weeks ago. The biopsy was over a week ago. I portaled briefly with him and he wanted to start lemon meds. Never heard from him since. My next appt is August to go over pet scans from April and biopsy of May 2. And starting new meds. I think it's terrible. Unless of cos he's sick or family emergency but his Ass’t could let me know that. I'm. Not. Happy. With ALL docs in general.

Thanks. Sounds like a good healthcare plan you got there !

Kerry