When a patient learns they have cancer, they are petrified. They feel like they are on the frontline of a deadly war and a bullet has sailed over their head, close enough that their hair moved. They will do anything and everything to not get hit by that bullet; therefore, they will gladly sign on for any treatments recommended to them, no matter the side effects or even adverse effects of these treatments. The mission—survival while in that foxhole.
Once a patient completes surgery, chemo, and radiation, they are advised to go on a long-term maintenance drug, like hormonal therapy, for 5 to 10 years. Some do not seem to see its importance as they did with their active treatment because they see themselves as war veterans who have survived the war and are no longer in that foxhole, worried every minute that another bullet will be shot at their head.
Now instead of asking which treatment works best, as they did when in consultations about surgical options, chemotherapy treatment choices, and radiation therapy, the patient wants to know which hormonal therapy has the least side effects.
What happened to wanting to know which one works the best for their clinical situation? Their foxhole faith has worn off. As oncology care professionals, we need another way to motivate the patient to take a maintenance therapy and adhere to this daily treatment. They will likely be given a prescription for the drug to be filled at their local pharmacy and not see the medical oncologist for 3 or even 6 months, when they were accustomed to seeing someone at least monthly, leaving behind a feeling that the treatment team is not worried about them anymore.
We need to ensure patients understand the purpose of maintenance therapy, like hormonal therapy, by explaining:
- Why it is being prescribed
- The calculated risk of local, regional, and distant recurrence (each being a different percentage number)
- How taking such a drug as prescribed can reduce that risk.
We also need to provide concrete solutions for side effects the patient will likely experience and educate their spouse/partner about these side effects, how we will help manage them, and why this drug is important to diligently take. Without spousal/partner support and buy-in, the patient will likely stop taking the drug due to side effects such as its potential or likely interference with their sex life.
Sometimes, if a patient joins a support group and someone in that circle develops metastatic disease, they will quickly call you and tell you that they have not been taking their hormonal therapy as prescribed and want to know what damage may have been done as a result. We do not know the answer to this, but getting your patient inspired again, because they have readopted foxhole faith, is how they will resume therapy. In some cases, however, particularly if the support group member was taking hormonal therapy as prescribed and got a metastatic recurrence anyway, it is hard to explain to your patient why they should still stay on course.
I always tell my patients that I don’t want them to have regrets later. By not taking their medication, they can possibly get the disease again and the guilt can be overwhelming. We need to inspire them to identify reasons for wanting to stay on therapy. Maybe they want to see their granddaughter graduate from high school, their grandson get his driver’s license, or to celebrate a milestone anniversary. Whatever motivates them needs to be squarely in front of them—on their bathroom mirror on a Post-It note, or on the fridge in the form of a photo. It needs to be something they see every day to remind them why they want to become a long-term survivor.