Diagnosed With Leukemia: What Happens Now?

Receiving the news that you have leukemia, a cancer of the blood, is huge, often life-changing news. A leukemia diagnosis has a major impact, physically and emotionally, and a host of factors determine the next steps after leukemia has been diagnosed.

Some steps you’ll take on your own, others will require a specialized clinician. Either way, you’ve got this.

Process…Then Proceed

There is no right or wrong way to process your leukemia diagnosis. People experience a range of feelings and cope with the news differently. It’s normal to have feelings of disbelief, fear, grief, and shock. Feeling sad, angry, and uncertain are all normal emotions in response to an unforeseen life change like leukemia.

Try to process your feelings and find a way to express them. Perhaps confide in some trusted friends or relatives. If you’re not ready to share your diagnosis with others, consider keeping a private journal. If you are ready to share your leukemia diagnosis with others, check out these useful tips on talking to your loved ones, talking to children, and talking to your employer.

Assess and Analyze: Drilling Down for All the Details

Your medical provider will want to find out as much about your leukemia as possible. They will likely learn more through a biopsy (or biopsies), blood tests, physical exams, and talking with you about your symptoms and health history.

The different types of leukemia are generally classified as acute (fast-growing) or chronic (slower-growing), and by whether cancer originates in the myeloid cells or lymphoid cells. Knowing as much about your cancer, including the type and stage of leukemia, will help your doctor determine the best treatment options for you.

Ask, Ask, Ask Again: Learn About Your Leukemia

A leukemia diagnosis comes with a steep learning curve, so don’t expect to learn all about the disease in one sitting. As a good starting point, there are many online resources available to help educate yourself about the type of leukemia you have. Consider keeping a notebook to capture your questions as they arise — take notes at doctor’s appointments and during your own research.

Learning about your leukemia can provide a sense of control during a time when things can feel totally out of your control. It also empowers and enables you to be an informed decision maker in your treatment and recovery. Don’t be afraid to ask questions.

Assemble and Align: Treatment Plan and Treatment Goals

There’s no one-size-fits-all approach to treating leukemia. Your treatment plan should be designed specifically for you. Your treatment team should help you understand the purpose of the treatment, whether it is to cure the leukemia, address a problematic risk factor, curb cancer’s spread, or manage an underlying, exacerbating factor.

You’re not just a passenger on this leukemia journey. You’re the key decision maker and your own greatest advocate. Make sure you’re comfortable with the treatment plan and the various providers who will be treating and caring for you along the way. Some things to know and understand include:

The names and contact information of your entire treatment team
The names of the drugs you’ll be taking and what each is for
Possible side effects of each medication or treatment
Possible interactions between the drugs (and those that you’re taking for other health conditions)
Any signs or problems you should call the cancer care team about immediately

A Second Opinion

Getting the opinion of at least one other healthcare provider before starting treatment can help you confirm that a suggested treatment is the right approach. Your current providers should fully support you getting a second (or even third) opinion. If they don’t, they’re likely not the best cancer care provider for you.

Advance: Undergoing Leukemia Treatment

Often, a combination of therapies helps achieve the best possible results. Leukemia treatment might include radiation therapy, chemotherapy, and targeted therapy or immunotherapy. All treatments come with the risk of unpleasant side effects. You and your care team may also decide on palliative care or clinical trials.

Palliative care is not the same as terminal care and support. Palliative care is a standard part of cancer care that can help manage side effects and maximize your quality of life during treatment. Palliative care can be provided at any time during the cancer experience.

A common misconception about clinical trials is that they are a last-line treatment option for use after all other treatments have failed. Instead, clinical trials can offer access to the latest therapies. Be sure to talk to your treatment team about clinical trials underway that may be appropriate for you.

Adjust and Reassess

With modern treatments, rates of remission are high for most types of leukemia. However, many factors (including the severity of leukemia and your health history) determine the likelihood of treatment success. Relapse is a serious concern for many after their leukemia is in remission. Even just a few cancer cells remaining after treatment could grow and eventually cause relapse. Ongoing monitoring and follow-up testing of minimum residual disease (MRD) will be part of your new normal.

“What is MRD?” you’re probably asking. MRD is a measurement of how many leukemia cells remain in a person’s system after treatment. MRD is now accepted by the medical community as the most accurate cancer measurement and the strongest factor in predicting outcomes of leukemia.