Smart Patients Get Smart Care™

The World’s Leading Authority for Chronic Lymphocytic Leukemia Patients

In Watch and Wait. Concerned that CLL might be worsening. Oncologist says not to worry but I am.

Ask the RN Question:

I am a 52-year-old female diagnosed with CLL approximately seven years ago, in Watch and Wait. I’m a retired Oncology RN and my oncologist is my previous co-worker and though a great oncologist, may be not a CLL expert. I’m feeling she is not taking my CLL as seriously as I would like – keeps telling me not to worry…let HER worry. (Maybe she doesn’t want to give me bad news AND she likes control.) My sxs have worsened in the last 6 mos (lymphs and WBC’s have almost doubled in 6mos, lymph nodes very increased, bad night sweats, and the fatigue is the worst. I am due to see her in a month. I called with my new labs to ask if she wanted to see me sooner and she left a message back that I’m “stable” and not to worry. Though my labs aren’t as bad as they could be, I’m wondering if I’m being overly concerned. I don’t feel “stable.” I’m very worried and unhappy with her right now. I guess I want to know if her answers are appropriate and I shouldn’t worry so much, or if I need a second opinion. Or is it too early in my progression? My quality of life is suffering with fatigue and worry (and more worry about COVID which has me staying at home mostly!) This probably needs to be asked in a support group setting but I always like to start with a nurse. I’m feeling like maybe she thinks I’m a baby or a hypochondriac. I know her oncology patients are very sick but I have this thing that I feel needs to be seriously addressed. I really would like to DO something, treatment maybe, before it gets worse.

Answer: You have many valid points, and as nurses we also understand the importance of advocating for our best care. When you have a close colleague (and sometimes a friend) as your healthcare provider it can set up an awkward set of circumstances when you bring up suggestions and there is not shared decision making. At CLL Society, we ALWAYS encourage second opinions. And with CLL, since it is a rare blood cancer that few (generalist) oncologists take care of on a regular basis, we also always recommend you have a CLL specialist manage your disease if at all possible. I’m going to provide some links to resources that you may or may not have already read about on our website.

You have mentioned some things that are strong signals that your CLL might be progressing and could possibly require treatment. Here is an article you might find helpful that talks about night sweats and starting treatment that maybe you could share with her: https://cllsociety.org/2016/03/cll-watch-wait-start-treatment/. Without knowing all of your other lab results and other medical information we of course cannot make any determinations. But the decision to start therapy in CLL is almost never guided by an increase in any one lab result (although your WBC doubling so quickly is certainly something that needs to be looked into). We cover this topic in the article: “CLL-When to Watch and Wait and When to Start Treatment” which can be viewed here on our website: https://cllsociety.org/2016/03/cll-watch-wait-start-treatment/

And last but not least, you are a candidate for our free second opinion program called the Expert Access™ Program, which you can find more information on here: https://cllsociety.org/cll-society-expert-access/. A renowned CLL expert will review your medical records, meet with you virtually for 30 minutes, and provide a report to you, which you can share with your oncologist (if you choose) to let them know what treatment if any they would recommend at this time for you. It takes about a month to get a hold of all your records and have the specialist review them. So, if you are interested, we recommend going ahead and applying so you can get the process going.

And last but not least, it sounds like you are already part of a support group? If not, please go to our website and sign up for one. They are a GREAT source of education and support, which is so important with this disease. You can find those here (they are all virtual, so being in a close location really isn’t as much of a concern anymore): https://cllsociety.org/cll-specific-patient-support-groups/