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Since the effects of your cancer and your therapy may linger or reappear years after your last treatment, it’s important for your current doctors to know what you’ve been through. Armed with information about your cancer and treatment, your “regular” doctor can monitor any late effects, work together with you to develop healthy habits, and help you with referrals to specialists.
As a survivor, what should I tell my doctors?
Your primary care doctor may ask you about your leukemia when she asks for your medical history. But don’t just check the box that says “cancer” on the forms you fill out in the waiting room. The more information you can give to your doctors, the better.
At the very least, you should let them know:
- what kind of leukemia you had
- when and where you were treated
- what kinds of medication/therapy you received, and in what doses
If you know more detailed information about your treatment, you might want to share:
- the dates of specific treatments, and the dates of any relapses in your disease
- whether you were given standard or high doses of chemotherapy
- how you received your doses
- through an IV or by mouth
- whether you received any drugs in preparation for a bone marrow or other transplant
- whether you had any complications from your treatment
- contact information for the specialists who treated your cancer If you were treated at the Sidney
Kimmel Cancer Center at Johns Hopkins for your leukemia, your two-page summary of treatment will be an excellent resource for answering all these questions.
My primary care doctor wants to talk to me about losing weight. Does this have anything to do with my leukemia?
Like every other patient your doctor sees, you’re probably getting advice on how to eat healthy, get more exercise and maybe quit smoking. But you’re not like every other patient, and you may experience health concerns in these areas that are related to your leukemia.
For instance, smoking could be a critical problem for patients with lungs damaged by their cancer therapy. Hormonal imbalances from chemotherapy can make some survivors more prone to obesity. Survivors may also experience higher rates of depression after their treatment It’s important for your doctor to know about these issues, since it may help her plan a treatment program with you that is different from the “usual” treatment.
What should I bring to my doctor visits, or to the emergency room?
- Your treatment summary from the Center, or a similar summary from the place where you were treated. If you don’t have a summary like this, you can create your own short record using the points discussed above as a guide.
- All patients, whether they are survivors or not, should share a list of their current medications (including over the counter medications, vitamins and herbal supplements) with a new doctor.
- Avoid bringing in reams of printouts on your condition from the Internet, since most doctors won’t have the time to read through the material that you’ve collected.
If your doctor does want more information on late effects in survivors, you can point them toward the regularly updated guidelines from the Children’s Oncology Group.