I live in a small town in Arizona and am struggling to find out information regarding what to expect going forward. I am 39 years old and recently diagnosed with CLL. I have two children and am trying to figure out what all needs to be done testing-wise. I feel like I’m not being taken seriously by some of the specialists because of my age. I am currently scheduled for a bone marrow biopsy next week, but even that I had to fight for.
Answer: We are very sorry to hear you are having a tough time being heard by your healthcare providers. There are several things we would like for you to consider.
First, you might consider at least consulting with a new specialist. Please see the list of ones we have listed on our website. It is never a bad idea to get a second opinion!
Second, if for some reason your insurance will not cover seeing one of the physicians from our list, then you might benefit from our free online Expert Access program. It allows patients to have a CLL expert review the medical records, then provide a 30‑minute HIPAA-compliant online visit with that expert to answer questions and to provide ideas and notes to take to the local treating doctor. A diagnosis of CLL and USA residency are the only requirements. Here is the link to apply for this free program:
And last but not least, please consider getting connected with a support group. You mentioned being in a small town, but the nice thing is that our groups meet virtually now. So, while we encourage you to try and join one close to you, honestly you can join any one of our 32 support groups across the country. It sounds like you could really benefit from being around others who have walked this road before you and have had similar struggles. You can find more information about how to join one here.
Keep advocating for your care! You are doing a great job. CLL is a chronic disease, so we often tell patients to slow down and reassess things while taking some good deep breaths. CLL is seldom treated right away, and many go for years upon years without ever needing treatment. So, take this time to learn as much as you possibly can about the disease and all the potential therapies that are available and work well.
That being said, frequent lab draws and monitoring of your symptoms are essential. And it will be important at some point to learn your genetic biomarkers. You can read more about that here and share with your healthcare providers, if necessary, our one-pager to help explain.
I’m sorry if this was a lot, but we wanted to point you in the direction of some resources that we think will be helpful to our specific needs right now.