When you find out that you have metastatic breast cancer, it can take time to come to terms with that and what your next steps may need to be.
Like many other tough situations you may have faced, there are things you can control and things you can't. Here's how taking care of yourself looks right now. You don't have to figure it all out immediately, but every step builds peace of mind for your future.
List Your Questions
Every doctor's appointment involves two kinds of questions: the ones you ask and the ones your doctor asks you.
Before you go, think ahead about some of the questions your doctor will ask you, including pain control, your goals for care, and what treatment options you want to consider. You don’t have to decide on the spot. Take some time to work through what's most important to you.
Then make a list of every question you have, what you can expect over the next 3, 6, and 9 months, medicines and their side effects, and which treatments -- including clinical trials and “complementary” therapies to do in addition to your other care (like acupuncture or massage) -- are good options for you.
Always make your last question: Is there anything I haven't asked that I should know? Take notes, bring someone who can help, or ask your doctor for permission to record the conversation. If you don't understand an answer, say so.
If you can bring a friend or partner to your doctor appointments, that may help you remember to cover all your questions and what answers you got.
Consider Getting a Second Opinion
Some people like to pick one course of treatment and go with it. Others prefer to shop around. It’s OK to want to know if another doctor might have a different plan for treatment. Some insurance plans require it.
If seeking a second opinion feels right to you, find out what your policy covers and get prepared. To make the most of the visit, ask your doctor for copies of your pathology report, details of your current treatment plan, and a list of any care you’ve already gotten. If you had surgery, the hospital can provide you with copies of your operative report and discharge summary.
Decide How to Share the News
It's up to you to share it however, whenever, and with whomever you want. Whether it's a recurrence or new diagnosis, none of it is easy, but it helps to know what you want to say before you say it.
Sharing the news with a partner or spouse is different from telling a child, older relative, or co-worker. It may help to make a list of people you want to tell personally, then jot down a few things you want each to know.
Be ready for it to be emotional. But remember, you need to take care of yourself, so take your time until you're ready.
If you have a job and want or need to keep working, think about how it fits into your treatment process. For some, it provides a sense of purpose and social interaction. And many people need to work for financial or health care reasons.
Share what feels right with your employer, and keep the lines of communication open. Some treatments may cause memory problems, so let your doctor know if you plan to keep working. In the meantime, get to know your employer's short- and long-term disability options in case you decide to take time off down the road.
Tap Your Support System
Support is all around you, from your health care team to family, friends, and online or in-person groups of those going through the same thing. Don’t hesitate: Reach out when you need help. Sometimes, acquaintances or even people you don’t know well turn out to be amazing listeners. Be open to all people and possibilities, including mental health professionals and faith or spiritual advisors.
Live in the now. Plan for the future. You may live a long time with your breast cancer.
There’s some homework to check on. Make sure all of the official documents that express your wishes and that take care of your loved ones -- such as a will, a living will, power of attorney, and advance directives -- are up to date. Keep these, including insurance policies, in a safe place and give access to those you trust.
But think beyond that. Try to stay hopeful, and remember that there may be many positive possibilities still ahead.