Understanding Non-Compliance: My Journey with Blood Cancer

Dealing with blood cancer is challenging enough without facing misunderstandings and misjudgments. Here’s my story of being perceived as non-compliant to treatment, and what I did about it.

The struggle with treatment

When I was diagnosed with leukemia in 2011, I had a tough road ahead. The treatments, specifically tyrosine kinase inhibitors (TKIs), take a severe toll on the body. I had rashes, sweats/chills, nausea, aches and pains. My bloodwork showed issues with my platelets, plasma, and white blood cells. It felt hardly worth the effort to continue treatment. I needed a change.

When I requested a treatment change from my oncologist, I was told I was already on the best option available. My oncologist suggested blood transfusions twice a month!

When I expressed reluctance, I was met with sympathy but a firm approach. I was asked if I could comply with this treatment plan.

I said I could not. I couldn't imagine living that way. My compliance was in question. I stood my ground.

I think that non-compliance flows both ways. I'm just that cheeky! Determined to find a solution, I asked for a referral to a hematologist. After some debate,  a little coaxing, and a promise to follow-up, the referral was made.

The hematologist's intervention

After two appointments with the hematologist, I was given five vaccinations over five weeks. It wasn't easy, but by the sixth week my bloodwork had significantly improved.

Suddenly, there was no longer a need for blood transfusions! I was beyond grateful.

Oncologists know their treatment plans, but they don’t know everything. No one does, really. A referral to a specialist is not a form of non-compliance, but then there’s more.

Regular tests and rural challenges

Living in a rural area presents its challenges. I am diligent in getting my tests done as prescribed: metabolic blood tests, FISH blood tests, and complete blood counts (CBC). Some samples need to be done at the hospital, and then flown to the lab in the city.

Despite my efforts, something went wrong. A nurse from my Cancer Care Team called one day. She informed me that my oncologist was considering exiting my file due to non-compliance with necessary blood work.

I was flabbergasted! I had followed up on all tests. I had been to the hospital’s blood lab on the dates requested. I had no idea why this was happening, and I don’t mind telling you that I was scared.

I asked the nurse if she had my CBC blood work results, which would have been completed at my local hospital lab. Her records showed those results; from there she searched my file, and eventually she found the missing molecular, and FISH blood test results. I was so relieved.

Health care system communication breakdowns are not non-compliance< on the patient's part.  Without the test results, the dosage of medication cannot be prescribed or adjusted. My compliance was proven, my treatment was permitted to continue, all thanks to a diligent nurse's problem solving. 

The importance of communication

These experiences taught me that the perception of patient compliance to care can effect patient access to care. When doctors perceive a rejection of their care plan, it can be translated as a refusal of any care plan. This perception can lead to a lack of care for patients like you and me.

Just because we chose not to comply to certain cancer treatments, does not mean we will not comply to any cancer treatment. That's important to communicate.

When symptoms and side effects become overwhelming, when test results are missing, and when communication between healthcare providers breaks down, sometimes it is up to the patient to repair the damage. Advocating for ourselves is not easy. It's important though.

To avoid miscommunication, I’ve learned the importance of keeping my care team updated. Here are some things that have helped me get through complicated scenarios:

• Keep a cancer journal: Provide information at the beginning of appointments by sharing our notes since the last appointment. Include any tests done, any other healthcare professionals seen, and an update on symptoms we've have had since the last visit. Bring our meds with us so our doctor can review them, too.

• Ask questions: We need to ask what our care team needs us to do. Ask where, when, and how any tests need to be completed. If we need support to get those things done, we can ask where to get that support.

• Arrange follow-up: We to ask about the next appointment, and how to arrange it.
• Repeat the Process: Regularly update and verify information with your care team to maintain clear communication. Your notes are your guide.

When life gets in the way and we haven't been able to comply with our treatment we need to be transparent with our care providers.  It’s ok to explain our situation, and ask for a do-over. Our care providers can help us get back on track.

Have you ever been perceived as non-compliant with treatment? Let me know in the comments below. Thanks for reading.