There's no two ways about it -- finding out you have late-stage breast cancer that has spread, or metastasized to other areas of the body, is scary. But there is help out there: the best kind of help, the kind that comes from people who have been exactly where you are and have wisdom to share. Here are the top eight tips, in the form of do's and don'ts, offered by late-stage breast cancer survivors who want you to know what they wish they had known at the start of their journey.
Tip #1: Do Learn to Be Aggressive
We'd all like to think that the minute you're diagnosed with cancer, every possible resource becomes available to you. And of course that's how it should be. But unfortunately, this isn't the reality, breast cancer survivors say. You'll need to quickly get up to speed on how to be a proactive patient. That means learning how to ask, demand, investigate, and fight for tests, treatment options, therapy for side effects, financial resources, and possibly even access to experimental treatments and clinical trials.
"Before my appointments I do tons of research and talk to other women with similar cancer diagnoses. Then I make a list of tests, drugs, and other treatments to ask the doctor about," says one breast cancer survivor. "If it weren't for my own research and that of other patients, I wouldn't have learned about cutting-edge tests like androgen receptivity and chemosensitivity, and I'd still be dealing with horrific bone pain."
Don't Let Doctors Make You Feel Dumb
It's your body, and your disease, and you're the one fighting the battle. That's the message from those living with late-stage breast cancer, who say that the complexity and scientific jargon of cancer treatment can be so intimidating that many patients go through treatment without really understanding what's happening. So when a doctor or nurse's explanations leave you confused, speak up and ask for clarification. And if you find you're still in the dark after an appointment, don't hesitate to call or ask to come in for another consult. If you consistently find that members of your cancer team don't have the time and availability to actively involve you in your treatment plan, it's your right -- and probably a good idea -- to seek a second opinion or even a new medical team. The stakes are high and the quality of care varies widely over doctors, hospitals, and insurance plans.
Do Find a Community of Fellow Survivors
No matter how much your family and friends love you and show their concern and support, they can't understand what you're going through. Truthfully, they never will, no matter how much you try to articulate what you're thinking and feeling. The fact is, it's impossible to imagine the emotional and physical experience of living with a diagnosis of metastatic cancer and going through treatments that can leave you physically and mentally exhausted, as well as in pain. The only solution: connecting with others in the same situation.
Often calling themselves "metsisters," women (and men) with metastatic breast cancer help each other stay positive and combat fear while they wait for test results; make treatment decisions; undergo chemo, radiation, and surgery; try new meds; and cope with side effects. If there's a breast cancer support group near you -- particularly one for those with metastatic cancer -- join up. But don't stop there. Check out the many online breast cancer communities and find one or more you feel comfortable with. "You may find a general community you like, then also want to join a more specific group or bulletin board for people with similar diagnoses," says one patient.
Do Put Yourself First
Remember the flight crew's admonition to put your own oxygen mask on first, before trying to help others? That's never been as true as it is now that you've been diagnosed with late-stage breast cancer. And one of the few positive things to come out of a breast cancer diagnosis is that you now (hopefully) have your family's permission to prioritize self-care. No matter how busy you are, make it a priority to attend meetings of your breast cancer support group, or to spend time online in forums. Go to meetings regularly and stay in contact in between. It helps, survivors say, if you consider it part of your treatment, and explain it to family and friends that way. You wouldn't miss a doctor's appointment, right? Treat support group meetings as one more medical appointment. After all, research shows stress can interfere with cancer treatment, and a support group is one of the best ways to combat stress.
Do Investigate Alternative Therapies
Yes, there are quacks out there, and many, many untested therapies that can waste your time and money. That said, many alternative and complementary therapies have been found to alleviate side effects and symptoms, boost immune function, and improve tolerance to chemotherapy and radiation. For example, a recent study at Memorial Sloan-Kettering Cancer Center found that acupuncture had a significant effect in reducing the swelling associated with lymphedema in breast cancer patients.
What's futurizing? It's a term used by psychologists to describe what we do when we let our thoughts dwell on the future, ruminating on what's to come rather than focusing on what's happening in the present. It's natural, when you have a life-threatening disease like late-stage breast cancer, to look ahead and try to anticipate what's down the road. But the truth is, you just don't know, and all the worrying in the world won't change anything.
Instead, do your best to bring yourself back to the present moment and focus on the positive things happening around you. It can help to do activities that "root" you in the present, like meditating or taking a walk. Advises one breast cancer survivor: "Take one day at a time. I find being outside and staying active is a lot healthier for me than sitting inside feeling sorry for myself." No question you are going through a difficult time, and it's important to acknowledge that. But when you get stuck in thought cycles about what's to come, survivors say, you give fear more power over you.
Do Ask for a Prognosis -- and Then Promptly Forget About It
Unless you really feel strongly that you'd rather remain in the dark, breast cancer patients overwhelmingly recommend asking your doctor to give it to you straight when it comes to your prognosis. "Before I demanded that my doctor give me the lowdown, I felt like she was pussyfooting around," says one woman with stage IV breast cancer. "I felt very uncomfortable with the feeling that she knew more than she was sharing."
But here's the trick: Once you get that straight-shooting prognosis, don't let yourself be ruled by it. The world of late-stage breast cancer patients is peopled by those who were told they had one, two, three years to live -- and are still here 15 or 20 years later. Ask those who run breast cancer support groups, and they will tell you they have group members who've lived more than 20 years after a stage IV diagnosis. New treatment options are approved every year, and more are on the horizon. No one knows what makes the difference between those who don't get better and those who do, but research does show that hearing positive stories from survivors, getting plenty of support, and focusing on what you can do, rather than what you can't, all help keep you on track to feel better.
Do See Your Cancer in the Context of Your Whole Lifestyle
Survey those with late-stage breast cancer and one thing jumps out at you. With few exceptions, they've taken their cancer diagnosis and run with it -- in the direction of overall healthy lifestyle changes. In other words, rather than just fighting cancer in isolation, they've taken steps to feel better and live healthier, whether that means changing their diet, losing weight, taking up a fitness activity, or engaging in mindfulness practices like deep breathing and meditation. As one stage IIIC cancer patient put it, "For me, getting a cancer diagnosis was like a kick in the butt to do all the things I'd been promising myself to do for years. I finally made time to take yoga, and I organized a group of friends to walk twice a week. In my support group we laugh that if it wasn't for the negative effects from treatment, we'd feel the best we ever have in our lives."