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Breast cancer survivors’ life guide: how to live well after breast cancer

The American Cancer Society estimates there are some 2.5 million breast cancer survivors in the United States, and for most of them, life never goes back to what it used to be, said Dr. Marisa C. Weiss, a breast oncologist.

Dr. Weiss is the co-author of a new book, “Living Well Beyond Breast Cancer: A Survivor’s Guide for When Treatment Ends and the Rest of Your Life Begins.’’ The book, written with her mother, Ellen Weiss, was originally published in 1998 as “Living Beyond Breast Cancer.” The updated version reflects not only the dramatic changes in breast cancer treatment and advice over the past 12 years but also addresses a range of issues now more commonly faced by women after treatment, like “chemo” brain and sleep problems. In addition, the book reflects the personal experience of Ellen Weiss, who learned she had breast cancer five years ago. Dr. Weiss said her mother was doing well and “was able to provide deeper and more useful insights into the experience of surviving breast cancer.”

For the Friday “Well Bookshelf” series, I recently spoke to Dr. Weiss about her new book and why women need more information about life after breast cancer. Here is our conversation.

Q.There are so many books now about breast cancer. Why did you decide to write this book?

A.More and more women are surviving breast cancer because of advances in early detection and treatment. They want to know how to move on with their lives. The whole point of diagnosing breast cancer and treating it effectively, it’s not to give treatment. It’s to give them back a life worth living that’s meaningful, that’s fun, where they’re contributing. We want to make sure that women have all the information they need to get past their treatment, move on with their lives and overcome or manage a lot of the lingering issues.

Q.People often talk about getting back to “normal” life. Is that possible after breast cancer?

A.It used to be when we talked about women getting past breast cancer, we talked about how long would it be to return to normal. They never go back to where they were. Their lives are transformed by this experience. What’s realistic is they get to a new normal. Life won’t look the same as it did, but with time they can reestablish a sense of normalcy and feel much more like themselves again.

Q.Why did you change the title to “Living Well Beyond Breast Cancer”?

A.Because people don’t want to just be living beyond breast cancer. They don’t need to just live. They want to live well. And they want to live well beyond this disease. When the C.D.C. (Centers for Disease Control and Prevention) and SEER (Surveillance Epidemiology and End Results) issue survivorship data, they usually give five year survivorship. Women are like: “Five years? Tell me my chance of living 10 years, 15 years, 25 years.” They say, “I have a 5-year-old kid. I want to see her walk down the aisle 20 years from now.”

Q.Does this book have treatment advice for a woman newly diagnosed with breast cancer?

A.The book picks up where your primary treatment drops off. After surgery, radiation, chemotherapy, that’s where women start to ask themselves: When this is over, what do I do next? Do I ever see these doctors again? How do I move beyond it? There are a lot of treatments ongoing. Hormonal therapy like tamoxifen or aromatase inhibitors, those go on for five years. Herceptin goes on for a full year. For anybody who is living with metastatic disease, they are on continuous treatment. So we have information in the book about ongoing therapies.

Q.What’s one of the most common questions women ask after breast cancer treatment ends?

A.One thing women don’t anticipate is that at the end of treatment, instead of feeling jubilant and completely relieved and happy, they often feel depressed and anxious and worried and isolated. They were in this continuous whirlwind tour of the medical system, and then all of a sudden they are abandoned and there is separation anxiety when they no longer see their doctors on a regular basis for treatment. Everybody expects they will get back to normal right away and go back to a full time job, go back to their prior expectations and performance. That’s not always realistic. There is a reality check of being different than you were and not having active sympathy since treatment is over.

Q.What are some of the other common experiences of women after breast cancer treatment?

A.Another big side effect is fatigue. There are hot flashes from premature menopause and side effects of ongoing hormonal therapies. Another one is difficulty with cognition. People call it “chemo” brain or mind fog – that’s also a big issue. Difficulty sleeping. Waking up with anxiety, hot flashes, restlessness – you no longer feel as rested during the day. And especially for any young woman who goes through this, they also struggle with body image issues.

Q.Did you talk about “chemo” brain in the first edition of the book?

A.There was some information, but it was really small. We know now that women really suffer from not being able to perform as well as they used to. More women get chemotherapy and are taking ongoing therapies. These things can affect their cognitive ability and ability to multitask. A woman today is on the cellphone, the BlackBerry, on the computer, kids are calling her and she’s meeting a deadline for work. The need to multitask constantly is so much more today than it used to be. It’s not a surprise that this issue should be much bigger today than it was even 12 years go.

Q.Do you ever hear from women who say that the new normal after breast cancer is better than the old normal before their diagnosis?

A.Many people have transformational experiences where they feel like: “I know what really matters to me. My priorities have been reordered. I know who my friends are, I know who I want to spend time with. I’m going to make sure I travel more.’’ They realize how precious life is and that life is your greatest gift. The whole reason you subject yourself to chemo, radiation, surgery and all this rough stuff is to get back to a life you find worth living. On the other side, people say, “I’ve worked hard to get to this point, I’m not going to take anything for granted.” I hear a lot of times women say: “My life is better than it ever was before. My relationship is stronger with my husband,” or “I’m getting out of a dysfunctional relationship.’’

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