My Health Journey: watch and wait

It is only logical that people would wonder why in the world specialists -- experts in their field of research -- would advise cancer patients like me to wait to start treatment. Isn't it better to "nip it in the bud"? Stop it in its tracks? Kill it NOW!!! One would think. But SLL/CLL is a lazy cancer. SLL/CLL is a type of lymphoma/leukemia they have seen do so little to their patients for so many years, that taking prescription drugs that come with some serious risks, such as bleeding internally and infections that could lead to sepsis, the CLL experts tell us to wait.

The progression of this cancer is easily monitored with blood tests and a CT scan to measure changes in the size of swollen lymph nodes. That's the way we watch it. We watch it do almost nothing to our quality of life. Sure, some lymph nodes wax and wane like the moon -- they increase a little, then decrease, painlessly, imperceptibly -- we wouldn't even know we have cancer if they weren't monitoring it.

Many people live with CLL for >10 years without symptoms or treatment. This is why the experts generally advise us to watch and wait. Until it does something that affects quality of life or presents life-threatening symptoms, such as a swollen lymph node that constricts breathing or swallowing, or blood cell counts that are dangerously outside of normal range, or impacts vital organs, it simply does not warrant taking on the immediate risks of prescriptions that carry high risks, including possibly fatal risks.

It is better for us to go on with our lives, ignore the disease unless it presents a significant symptom, such as night sweats, fever, chronic anemia or fatigue -- and they make it a point to tell us that what they mean by night sweats is soaking through clothes and bedding, not merely waking up a little sweaty. By fatigue, they mean severe lethargy, not merely feeling tired or low energy.

I am at a stage where my hematology/oncology (hem/onc) specialist says it is optional -- if I want to start treatment, I may, she would prescribe it, it's my choice. My bone marrow sample had 50% cancer cells. That sounds like an awful lot. My doctor says I could start treatment at this time, if I choose, it is optional at this stage.

Before I make a decision either way, I will get a second opinion from an expert. The CLL Society offers this service. (cllsociety.org)

Several people in a CLL forum (healthunlocked.com) have told me they do not understand why my doctor even suggested starting treatment, given my current numbers and factors. Some have told me their numbers were worse than mine years ago and they continued to watch and wait, based on expert advice, and they've been fine, enjoying their life without the nuisance of the potential side effects and the frequent monitoring that goes with cancer treatment. They strongly urged me to speak with a CLL expert. Of course I will do that, because my recommendations are specific to my case, and those forum members do not have all of the relevant details and they are not experts.

I am confident in my doctor, she has ordered the recommended first-line tests, she has told me the same things I am reading in the CLL Society articles. There is no harm in getting a second opinion. I have time for it. This situation is not urgent. Nothing is imminent, as far as this cancer goes. It is not bothering me in the least.

For now, I plan to watch and wait in favor of other priorities this year...spending quality time with family who live far away, making memories, taking a special trip with my son while I am able, focusing on bone strengthening measures, and creative writing. I am working on a novel right now that I am very excited to complete.