The prognosis for women with breast cancer is good. Treatment options have multiplied in recent years; newer treatments are more effective and less invasive in their effect; and most women diagnosed this year will survive their breast cancer.
But none of this helps to alleviate the initial shock and disorientation that comes with a cancer diagnosis. Nearly a quarter million women will be diagnosed this year with breast cancer, and many will find themselves in a complex world filled with unfamiliar medical terminology, technology and treatment choices. Getting oriented in that world is the critical first step toward treatment and recovery.
Below, breast cancer experts from around the country offer a newly diagnosed patient some first words of advice.
Get informed. Explore all available information resources.
First I would tell her, all is not lost. Life has not ended today at the time of the diagnosis. Most women today who get breast cancer survive it. I would try to reassure her that with proper treatment and good care, there is much to be hopeful about.
I would urge her to get informed. The better informed you are, the more you can do for yourself. You can actually help your health care providers by being informed. So I would urge that patient to get informed and get familiar with a whole variety of information sources.
There are wonderful sources of information, for instance, on the World Wide Web. There is a wonderful array of sites where you can get information in plain English that's very understandable, and that's not fringe information. The National Cancer Institute's Web site is a great source. NABCO, or the National Association of Breast Care Organizations, also is a wonderful source of information. Ask your doctor which sources of information he or she would recommend. Then use that information to develop questions that you may want to ask your doctor or whoever is providing your care.
Hyman Muss, MD; Associate Director for Cancer Research, Vermont Cancer Center
Talk with other women who have breast cancer, and use family as a support.
I believe that one of the first steps she should take is to talk with other women who have breast cancer. What did they do? What treatment worked for them? How did it feel? How did they manage? She can then go back and discuss what she's learned with her family.
Family, or the equivalent of family, is extremely important. A woman diagnosed with breast cancer needs a tremendous amount of support. A woman's breasts are so much a part of her body, and if they're taken away, often women feel that some of their femininity has been taken away, and that's not true. The family can be enormously supportive and helpful in this respect, to provide comfort and confidence. They need to be supportive of her feelings, and supportive of the route of therapy that is chosen.
But at the end, she must make her own decisions about treatment. She should gather all the information she can, from doctors, from other women, and from discussion with family, and then she must choose her own approach.
Amelie G. Ramirez, DrPH; Associate Professor of Medicine and Deputy Director, Chronic Disease Prevention and Control Research Center; Baylor College of Medicine
Put together a healthcare team and bring someone with you to your visits.
The first thing she needs to do is acquire a team of physicians that will plan her treatment, and that usually involves a surgical oncologist, a medical oncologist and a radiation oncologist. For some women, surgery may be all that is necessary. For some women, radiation may not be needed, but it is important that that team is put together that will meet with her to coordinate her care. Sit down with those clinicians and discuss treatment plans.
I find it very helpful when a woman brings someone with her who is her advocate, be it her spouse, significant other, a family member or a friend. Oftentimes this information is very overwhelming and you need another person there who will capture some of that information and who you can go home and talk things over with. If she doesn't have someone like that, often a tape recorder is helpful to capture that information.
For some women, it's very helpful to get a second opinion. But again, the team that is working with you should be able to spend the time it takes to educate and to walk you through the process, and help you know what to expect.
Generosa Grana, MD; Director of the Breast Cancer Program; Cooper Hospital, Camden, New Jersey.
Treatment and recovery are complicated. Don't be afraid to ask questions.
In this day and age, a woman has to take a very proactive role in terms of reading about her disease process, understanding her disease process and being involved in the decision-making that's going to happen. In the days of old, the physician would tell a woman, "This is what you must do for the treatment of your breast cancer." We have now evolved from that to an era where there are a variety of choices to be made with regards to treatment. They may involve hormonal therapy. They may involve chemotherapy, or both. Within that realm, there are a variety of choices that can be made, and the woman needs to weigh in with her wishes and her interests.
Making a decision about choices of treatment can often be complex, and her doctor visits will be long, complicated visits. Make sure that all your questions are answered and they're answered fully. In preparing for particular forms of therapy, ask questions of the team that is involved in your care. I believe the more educated about side effects the woman is, the better she is able to deal with it. Just knowing what to expect goes a long way in terms of allowing you to manage with those effects.
There should be no question that she cannot ask. I urge women to take notes if they have questions at home and bring their questions to their physician and health care team so that they have a full handle on all of the issues that are going on.
Generosa Grana, MD; Director of the Breast Cancer Program; Cooper Hospital, Camden, New Jersey.
After the initial shock, it does get easier.
You are kind of blown away at first. Shocked. Overwhelmed. You can feel helpless, hopeless, and in despair. And I think it does get easier. Like anything else in life, you learn how to do it. You learn how to be a patient. You make friends in your setting. People do incorporate it into their lives.
Does anybody want to have cancer? No. But people do live much better today with cancer than they did 10 or 20 or 30 years ago. There are much better ways of managing the symptoms, and the side effects of the disease. There is much more support. There is much more openness. Most people go to work. They maintain their activities of daily living. And most people will tell you that they do learn how to live with it.
There are crisis points. There are times when the world gets turned upside down again. But as you're moving along through the treatment, like everything else, it develops some kind of routine qualities to it and people do cope with it. It is amazing the degree to which people are able to cope.
Diane S. Blum, Executive Director of Cancer Care, Inc.
