When dealing with metastatic breast cancer, oncology specialists tend to be very focused on the treatment aspect and forget you’re a person. The specialists may mainly focus on the treatment options that are available to you, what treatment you are currently taking, and what treatment you will have after the current line of therapy stops working, etc. However, you are far more than your treatment and your cancer’s pathology.
You, my dear, are a person with a life, who likely has a family to raise, a job to go to each day, and milestone family events to attend. So don’t wait for your doctor to ask you what is important to you—be assertive on your own behalf, or if necessary, ask your nurse navigator to speak up as your advocate. However you do this, make your voice heard.
Here are some things to consider discussing with your doctor, so that you don’t sacrifice significant upcoming events that are important to you.
Your Life Events Are Important
Your son is getting married in a month. You, however, are due to get underway with a new treatment for second-line therapy in 3 weeks. This may result in you being too ill to enjoy the wedding or even being able to attend it, because the potential side effects are unknown, given that this is a new treatment regimen.
What do you do? Tell your medical oncologist about the upcoming wedding and any other important dates that are coming up in the next 6 months. Work with the treatment team to incorporate these events into your treatment planning schedule, so that these things are not sacrificed to the cancer. This may mean taking a short drug holiday until right after the wedding weekend is completed. The goal, after all, is to have you living with good quality of life. Part of that quality of life includes having joyful moments with others, especially a son’s wedding.
Get Creative
You were planning to go to an exotic island for your 40th wedding anniversary. This is an important milestone in your lives and you don’t want it derailed by the cancer and its treatment. You tell your doctor you want a “drug holiday” for a month to accommodate your trip. Your doctor discourages you from going, insisting it would not be safe.
Rather than only suffering with the disappointment, learn more from the doctor why she said no. It is because your immune system is very taxed. Your body is not as strong as you may wish it to be. And perhaps, above all, your medical treatment is virtually absent at this vacation destination. If you got sick there, you could die.
So, an alternative is to replicate this second honeymoon closer to home. Have your daughters create a tropical landscape in your living room, invite others over for fresh pineapple, wine coolers, and tropical music. Have a romantic dinner at a nearby restaurant where you haven’t eaten before, and focus on your spouse, cuddling up with him, instead of on the tropical island vacation that was originally planned. Safety is important.
Stay Ahead of the Game
Every 4 to 6 months, update your calendar and share the other upcoming milestones with your treatment team, so they are already on their radar screen for discussion during the coming visits. You need to be living with your cancer rather than forfeiting your life to the cancer. Discussing your life events is also a way to remind your doctor that you are more than your diagnosis and its treatment. You still have a life to live, and you happen to also have metastatic breast cancer.
If you attend a metastatic breast cancer support group, bring this up as a topic of discussion. Don’t be surprised if fellow patients have been missing out on their significant milestones because they hesitate to tell their oncologist about them. Those patients may be playing a passive role in their care. Although this may be their choice, it doesn’t mean that they should miss out on events of importance to them.
Empower Other Patients
You also have the opportunity to help empower other patients by sharing how you are making sure your milestone events are dovetailed with your treatment planning process. No one is hurting the doctor’s feelings or stepping out of line. You each deserve, and should be, receiving patient-centered care. This is a key element of that care.
Enjoy these milestone events. Take lots of photographs, and perhaps a few videos too. These are cherished moments, now and for the future. Look for the next article in this series in the next issue of CONQUER: the patient voice.
