After learning that you have metastatic breast cancer, it can take a while to come to terms with the fact and then to think about what to do next, and like many difficulties, there are things you can control and things you can’t.
Here’s what you need to do to take care of yourself as a patient. It’s not necessary to get these questions straight right away, but each step helps build peace of mind.
List the problems that exist
Every visit involves two types of questions: questions that the patient asks the doctor and questions that the doctor asks the patient.
Before the visit, think ahead about what questions your doctor might ask, including pain control, treatment goals, and what treatments you would like to consider.
The patient does not need to make a decision on the spot; it is important for the patient to take some time to complete the decision, and then, the patient makes a list of his or her questions.
Include what to expect over the next 3, 6, and 9 months, the medications and their side effects, and what treatments are right for you, including clinical trials and “complementary” therapies (such as acupuncture or massage) to conventional treatments.
Any questions you didn’t ask?
Always ask yourself a question.
Always ask yourself one question: Are there any questions you didn’t ask? Make notes about your visit, bring someone who can help you, or ask your doctor if he or she will allow you to record the conversation.
If you don’t understand the doctor’s answer, say so. Bringing a friend or partner to the appointment will help you remember all the questions you asked and the answers you got.
Consider other treatment suggestions
Some patients like to choose one treatment and then follow it, and others like to weigh and compare between multiple treatments, and it is normal for patients to want to know if other doctors have different treatment recommendations.
If you plan to get other treatment opinions, you need to find out what your insurance covers and be prepared in advance. To make the most of your visit, ask your doctor for copies of the pathology report, the current detailed treatment plan, and the treatments you have received.
If you have already had surgery, ask the hospital for a copy of the surgical records and discharge summary.
Determine how to disclose your condition
It is up to the patient to decide how, when, and to whom to disclose information about their illness, whether it is a recurrence or a new cancer diagnosis that is overwhelming, but it is best to think about what you are going to say before disclosing your illness.
Disclosing to a spouse or partner is different from disclosing to children, older relatives, or co-workers, and it helps to have a list of who you want to tell personally and what information you want to tell each person.
Be prepared for mood swings to occur, and patients should remember to take care of themselves, so allow plenty of time to prepare.
Consider work carefully
If you have a job and want or need to continue working, you need to think about whether work conflicts with the healing process.
For some patients, work can provide a sense of purpose and social interaction, and others need to work for financial and other reasons.
It is important to make your wishes known to leadership and to keep communication open. Some treatments can cause memory impairment, so let your doctor know if you plan to continue working.
If you decide to take an extended leave of absence, also find out about your organization’s short- and long-term disability insurance policies.
Developing a support system
Support is all around, from the doctor’s team to family, friends, and groups of patients who are experiencing the same thing, and one should not hesitate to actively seek help when it is needed.
Sometimes acquaintances and even people you don’t know very well can be good listeners, keeping an open mind to all people and all possibilities, including mental health workers, faith or spiritual advisors.
Value the present
Living in the present and planning for the future, breast cancer patients can also have a long survival and there is some homework for patients to do.
Patients need to make sure that all official documents related to expressing their wishes and caring for their family are up to date, such as wills, living wills, powers of attorney and advance medical directives.
Keep these documents (including insurance documents) in a safe place that allows trusted people to have access to them.
But patients should not get bogged down in these chores, try to remain optimistic, and remember that there are still many hopeful possibilities ahead.