Seventy percent of patients completing her acute treatment (surgery, chemo, and radiation) will be candidates for taking hormonal therapy. All too often, patients are not well informed, however, about the purpose of this pill to be taken once a day for 5 years or more, nor do they realize its level of importance. The oncologist may even say to the patient “congratulations on being done with your treatment” as she hands her a prescription for hormonal therapy. This is an important teaching opportunity for you as her nurse navigator to ensure she understands what this drug is for, the importance of adhering to taking it as prescribed, what the side effects may be, and how to minimize those side effects when possible. If this isn’t done, then there is a high risk that she will not take the medication as prescribed.
Emphasize first that her treatment “isn’t done.” Hormonal therapy may actually be more important than much of the treatment she has even had to date. Startling, but true. Its purpose is to reduce her risk of local and distant recurrence, and it usually is effective in doing so for most patients. The patient needs to look at her acute treatment of surgery, chemo, and radiation as having been acute treatment and her hormonal therapy as long-term treatment.
Side effects—For women taking tamoxifen, side effects are expected and actually welcomed by the oncologist because it is a way of measuring that her body is properly metabolizing the drug. (Refer to information online about CYP2D6 testing and metabolizing tamoxifen). These symptoms commonly are night sweats, hot flashes, mood swings, irregular or absence of menses, insomnia, and achiness. For women on an aromatase inhibitor, similar side effects might happen (excluding menstrual changes because the patient is to be postmenopausal when receiving that drug) along with joint pain. In some cases, joint pain can be exacerbated if the patient’s vitamin D3 level is low. So getting a blood test and checking on this vitamin level is important. For patients on an antidepressant along with tamoxifen, getting her CYP2D6 level checked is a wise step to take as well. Menopausal symptoms need to be addressed individually. Wearing cotton clothing that breathes, wearing layers that can come off and on, having the bedroom cool at night, getting a Chillow pillow to reduce night sweats, and avoiding hot beverages and spicy foods all can help reduce this unpleasant symptoms. Vaginal dryness may be suppressed with vaginal lubricants like Astroglide or Replens. Libido may be lower too, so getting creative in the bedroom and allowing extra time for foreplay is key (and another reason why her partner needs to be clued in on why this medication is important and his/her role in adhering to the drug as prescribed).
Touching base between doctor’s visits commonly—Once a patient is on hormonal therapy she is seen every 6 months for prescription refills and a routine follow-up assessment. The navigator should consider contacting her after she has been on the medication for 2 weeks to see how she is doing. Nausea is common during the first 2 weeks, and then subsides thereafter. Contact her again at 3 months to ensure she is managing okay with the side effects and is taking the drug as prescribed.
Financial assistance needed—Hormonal therapy drugs are expensive. Patients may not tell you, however, that they can’t afford the drug. Each of the pharmaceutical companies that manufacture hormonal therapy offer discount programs to offset the expense of these medications. So as part of your “barrier assessment” determine if your patients will benefit from using such a discounted drug program.
Offer her encouragement and be her cheerleader—Five years is a long time and in the future the length of time may even increase to as long as 10 years for taking hormonal therapy in some form. Congratulate her as she reaches yearly milestones. She is that much higher on the survival curve and that much closer to completing her treatment, for real.