Life after breast cancer means returning to some familiar things and also making some new choices.
The song says "It ain't over 'til it's over," but when you've had breast cancer, you discover that it's not even over when it's over.
After a marathon of breast cancer diagnosis and treatment that may last six months to a year, you can hardly wait to get back to a normal life again. But the day of your last radiation treatment or chemotherapy infusion doesn't mark the end of your journey with breast cancer.
Instead, you're about to embark on another leg of the trip. This one is all about adjusting to life as a breast cancer survivor. In many ways, it will be a lot like the life you had before, but in other ways, it will be very different. Call it your "new normal."
From your relationships with your family and your spouse to eating habits and exercise, breast cancer will change your life in ways that last well after treatment ends. How do you fight lingering fatigue? What should you eat to help prevent a breast cancer recurrence? Will you ever have a regular sex life again? These are just a few of the questions that may nag at you as you make the transition from breast cancer treatment to breast cancer survival.
"Chemobrain" and Other After-Effects
You watched the last dose of chemotherapy drip from the IV into your veins six months ago. Your hair has really started to grow back. Maybe it's curly where it once was straight, or a lot grayer than before, but it's hair. You have eyebrows again. So why are you still so tired? When are you going to feel like you again?
"Your body has just been through an enormous assault, and recovery is a huge thing. You're not going to just bounce back right away," says oncologist Marisa Weiss, MD, founder of Breastcancer.org and the author of Living Beyond Breast Cancer. "You've been hit while you're down so many times: with surgery and anesthesia, perhaps with multiple cycles of chemotherapy, perhaps with radiation."
Two of the biggest hurdles women with breast cancer face post-treatment are fatigue resulting from chemotherapy and/or the accumulated effects of other treatments, and a phenomenon some women have dubbed "chemobrain" -- mental changes such as memory deficits and the inability to focus. If you tried, you probably couldn't pick two more frustrating and troubling side effects for women handling busy lives, managing careers, and caring for families.
"You expect them to go away as soon as treatment ends, and they don't," says Mary McCabe, RN, director of the Cancer Survivorship program at Memorial Sloan-Kettering Cancer Center in New York.
That such a program as McCabe's exists is a testament to the changing nature of what it means to have cancer. Women with breast cancer, like other people with a cancer diagnosis, are now surviving for so much longer, and in such large numbers, that some hospitals are opening entire departments devoted to survivorship The National Cancer Institute has also launched a special research area dedicated to studying what it means to survive cancer.
How long after breast cancer treatment ends can you expect fatigue, "chemobrain," and other post-treatment side effects to persist? Everyone's different, of course, but as a general rule of thumb, Weiss tells her patients to expect a recovery period about the same time from your first "cancer scare" moment to the date of your last treatment. So if you found a lump or had a suspicious mammogram in April, and had your last radiation treatment in December, it may be August or September of the following year before you reach your "new normal."
"Even then, that doesn't mean that you're fully back to yourself again, but by then you should have a sense of where you're going to be, what your energy level will be, and so on," Weiss says.
"I have a lot of patients who are in their second year of dealing with this. Yes, their main anti-cancer treatment may be over, but they're still figuring out how to manage the side effects of hormonal therapies and so on. It can feel like an endless process."
Breast cancer survivorship, Weiss observes, is a marathon, not a sprint. That means learning to handle the symptoms that stick around after treatment ends, says Sloan-Kettering's McCabe, by using those adaptive strategies you learned while on chemotherapy or recovering from surgery.
"You need to continue to have planned periods of rest, and think about what times in the day and after what activities you tend to find yourself most tired," she says. "If chemobrain is still bothering you, continue using tricks like writing things down, posting reminders to yourself, and asking people to repeat information." Some women find it helps to keep a daily diary, noting down the times when fatigue or mental fogginess hit hardest, to help them plan around it.
A Chance to Make Some Life Choices
Make sure your family and your officemates understand that just because treatment is over, that doesn't mean that you're going to be able to jump right back into running the carpool, coaching soccer, and traveling to conferences a week out of every month.
"Everyone's ready for treatment to be over, not just you, and although they've been supportive, your friends and family may be expecting you to spring back right away," says McCabe. "It's an education process. They need to understand that when the therapy stops, that doesn't mean that the effects of the therapy stop immediately."
Manage your expectations, urges Weiss. "Decrease the stress and the pressure on you in whatever ways you can. There are a lot of decisions you can make to take charge of how your life goes while you're in this recovery process."
For example, you may have certain ideas about how your house should look, how much income you're going to have, and what your commitments to your community need to be. Decide which of those things are really important to you and which ones don't matter quite as much. Let the less-important ones slide or find someone else to do them.
Gina Shaw is a medical writer who was treated for breast cancer in 2004, and now calls herself a "joyful breast cancer survivor."