Breast cancer survivors have a lot to celebrate. But after treatment ends, many questions remain. Will it come back? What follow-ups do I need? Will I ever feel cured? “After Breast Cancer” author and breast cancer survivor Musa Mayer joined us to talk about the healing after the treatment.
Moderator: Welcome to WebMD Live. Our guest today is Musa Mayer, author of “After Breast Cancer: Answers to Questions You’re Afraid to Ask.” In honor of National Beast Cancer Awareness month, she’s here to answer your questions about living after breast cancer treatment ends.
Welcome back to WebMD Live, Musa. After treatment ends, do most women worry, “Will it come back?”
Mayer: I think that’s true for many of us. I don’t know if that’s true for most, but if you take the time to learn about breast cancer, one of the things you learn very early on is that there is a risk of recurrence. I wrote this book because I didn’t feel that we understood very much about this risk, and that we needed more information, and to know that other women have the same fears that we do.
Moderator: What risk of recurrence do women face?
Mayer: That depends on their stage at diagnosis, so risk for recurrence is different with a woman with stage I disease, invasive breast cancer, and somewhat higher with stage II, and higher still for women with stage III. It also depends on the pathology of the tumor. As you know, we can’t always predict.
Moderator: In your book, you state that there are 2 million women alive in the U.S. who have faced breast cancer. Why do you suppose they don’t receive much attention after treatment ends?
Mayer: I think that most of us get the advice once treatment ends to get on with our lives and to put breast cancer behind us. Many of us can do this, but some of us, like myself, worry a lot about recurrence. In the early years after my diagnosis it was always in the back of my mind.
When I found out someone in my support group or a friend had a recurrence I was devastated, not only for them, but because it made me fear for myself.
I think there’s a little wishful thinking on the part of our doctors, our family, and friends. They would like it to be over, but for many of us it isn’t over, and I believe it has helped me, and many women that I know, to talk about this openly, to share our fears, to talk about what we go through every time we have an ache or a pain that persists, to talk about wondering whether we should call our oncologist, and to talk about how alone we feel with our fears when the rest of the world expects us to be OK now. Living with this level of uncertainty is very difficult. It takes support, information, and practice.
Member: I’m glad to hear you say that. I think many of us find it hard to move on.
Mayer: Yes, it is hard to move on. One of the things that has helped me most was getting real information about what to be concerned about, what was a real concern that should lead me to call my doctor, what kinds of tests, if any, should I be having, what were the actual risks for recurrence in my specific situation, and other issues that came up over time. I’m the kind of person who imagines the worst when I don’t have good information. I suspect a lot of you are like me in that way.
Member: I find it difficult to get my oncologist to take my questions and concerns seriously sometimes.
Mayer: The fact is that about 85 percent of the time a recurrence is found through a doctor taking a history or doing a physical examination or the patient reporting some persistent symptom. Your doctor is there to pay attention to your symptoms, and if the kinds of things that you bring up are not considered worrisome, your doctor should explain why and what to look for.
Moderator: What symptoms should you be looking for?
Mayer: The American Society of Clinical Oncology, the largest professional association for oncologists, gives the following signs and symptoms for patients to be aware of:
Chronic bone pain or tenderness
Skin rashes, redness or swelling
New lumps or other changes in your breast or on your chest
Chest pain or shortness of breath
Persistent abdominal pain
Changes in weight, especially weight loss
The question that women often ask is, what is persistent? What is a persistent pain? Does that mean a pain that lasts two hours, a day, or two weeks? I like the commonsense advice that Dr. Love (Dr. Susan Love ) gives: “If you have pain that lasts more than a week or two and isn’t going away and is not a pain that is familiar to you in your life, you should get it checked out.”
Member question: I’m 43; it’s been 6 years since my stage II diagnosis. I am doing great; no recurrence. I did the full route: surgery, chemo, radiation, and tamo. My oncologist retired last year. Other than a yearly mammogram should there be other follow-up (sonogram? MRI?). Could there be long-term effects from the cancer?
Mayer: There is very good research that shows that patients who have follow-up testing done, by which I mean bone scans, CT scans, MRI’s, tumor markers, etc., in the ABSENCE of symptoms do not do any better or live longer than patients who do not have any of these follow-up tests done.
If you have a sign or symptom that is persistent, as I was just telling you about, you should have it investigated in a timely way. But, in the absence of symptoms like this, there is no need to check to see if you have a recurrence before it is symptomatic. A very small percentage, by which I mean 1 percent or so, of women who receive chemotherapy may develop a blood disorder, sometimes many years later. But if you have no symptoms, there is no reason to be concerned.
So catching it early in a recurrence doesn’t give you a better chance?
Mayer: That’s right. Catching a metastatic recurrence before you have symptoms, versus catching it a month or two or three months later when it’s causing symptoms, makes no difference in the course of the disease or in survival. When I found this out and read the research that demonstrated this shocking fact, I was stunned.
What the research really tells us is that metastatic breast cancer, that is distant metastases, by which I mean cancer that travels through the blood stream to lodge in bones, lungs, liver, soft tissue, or brain (these are the most common sites) is the result of a systemic disease. It is considered incurable in almost all cases, but it is generally very treatable.
Early detection applies to primary breast cancer, where the idea is to stop the cancer before it leaves the breast tissue. But there really is no early detection when you are talking about advanced or metastatic breast cancer. As I said, the disease is systemic; it can be treated, but you do just as well when it is treated once there are symptoms as you do if you treat it before there are symptoms.
My oncologist says pain that lasts for weeks and gets progressively worse is the marker for metastatic — but I’ve heard of women with no pain having metastatic.
Mayer: Women can have metastatic disease with no pain, because it starts out very, very small; just a few cells attach themselves somewhere in the body. The pain is caused when these cells multiply and put pressure on that part of the body, like a nerve. So what I am saying is that in terms of making sure you don’t have a recurrence, it is not dangerous or harmful to wait until you have a symptom. You don’t need to be tested periodically to make sure that you are cancer free. In fact, the tests we have do not do a very good job at showing this.
Member: It sounds like there is no hope then!
Mayer: There is hope; there is lots of hope. Because metastatic breast cancer is a treatable disease and women are living longer with it every year. The most recent study on this shows that women with distant metastases can often live for many years. In fact, a study at M.D. Anderson Cancer Center shows that 40 percent of women with metastatic now live five years or more after finding out their cancer has spread.
So what I am saying to you is not that there is no hope, only that early detection of metastatic disease through testing before you have symptoms doesn’t offer an advantage for you. This means that you don’t have to drive yourself crazy with repeated tests every time you see your oncologist. It means that your body will let you know if there is a problem. This is very different than it was the first time your were diagnosed.
Member: I think that every patient should also have a psychologist during the first year, while she is going through treatments.
Mayer: Maybe so, but I think we’re pretty good at helping each other out with this. What helped me most was realizing I was normal. I had never faced this kind of fear and uncertainty before, and it took me a while to learn to live with it. So be gentle with yourself. Some people do struggle with depression and anxiety, and counseling and therapy can be very helpful, but for most of us what we need is good information, support, and time.
A friend is having a hysterectomy, solely to avoid the possibility of uterine cancer. She is a 3 ½ year survivor of breast cancer. Is this reaction normal?
Mayer: Perhaps if she is at high risk for uterine cancer. I don’t know what her particular situation is. If there is no indication for that and she hasn’t had major problems as a result of taking tamoxifen causing uterine wall thickening, then she may be overreacting. But I can’t be sure of that.
Member question: I was diagnosed with infiltrating ductal carcinoma, stage I, five years ago. Where may I find statistics/charts on survival rates?
Mayer: The problem with the charts that you find on survival is that generally you have to look at clinical trials that have been done on patients like you where they have been followed over time, so they would have to have the same diagnosis and the same treatment, then you could look to see how the group as a whole did. But within that group there will be some who have very early recurrences, some who have late recurrences, and some who have no recurrences. It’s impossible to know where you, yourself, fit into that curve.
The other thing is that we tend to keep figures in our head that we were given when we were diagnosed. I remember being told by my oncologist that with the treatment I had in my stage II cancer that I had somewhere between a 60 percent chance and an 85 percent chance of not having a recurrence, but what I didn’t realize, after carrying that figure in my head for all these years, is that that was true at the time, but the longer I was recurrence-free after my diagnosis, the better my chances became.
The reason this is true statistically is because most recurrences happen in the first five years after diagnosis. In about 75 percent of recurrences happen in the first five years, and after that the number gets smaller with every passing year. Even though it doesn’t vanish to nothing until nearly 30 years, the risk gets increasingly low over time. So you can see that if you survive without a recurrence, your chances of being recurrence-free improve over time. It’s called conditional survival.
We know, also, that if we look at the cancer databases for women who were treated in the United States 25 years ago their survival figures are lower than will be those who are diagnosed today, 25 years from now. This is because the treatment of breast cancer has changed so dramatically over time.
Member question: How do I deal with my husband who wants so much to put this all behind us? He was a wonderful support and helpmate throughout my treatment but I am still scared and he wants to pretend it never happened. How do we find a balance point?
Mayer: That’s so difficult. I experienced this with my husband, and I’ve heard it from hundreds of other women, not only about husbands, but also about friends, and from children. The fact is, we’re all sick of dealing with breast cancer at a certain point. I felt the need to continue to talk about it. I still worried long after my husband, who had a different way of coping, was able to put it behind him.
So I took my worries and concerns to my support group and eventually online to other women who felt as I did. I found that talking it through with them let me focus on other things in my marriage and in my friendships and other relationships.
Member question: I am the one “sick of dealing with breast cancer.” How do I get family to look at me as me again, and not as a breast cancer victim?
Mayer: I would consider talking directly to your family about your feelings. If it doesn’t work to simply change the subject and turn the focus on other issues, then perhaps you need to sit down with them, reassure them, and let them know that they can help you by allowing you to feel as normal as possible.
You know, this may have been the first time in their lives that they confronted something this scary, and when we first look death in the face, as all of us have, it takes a lot of adjustment. So consider that some of these people may be fearful for themselves and their own mortality, as much as they are worried about you.
Sometimes it’s almost easier to be the patient than it is to be a family member or caregiver. They feel so helpless.
Member question: Do you ever really gain peace of mind or is every ache and pain always a recurrence?
Mayer: For me, the turning point came about six years after my diagnosis when my husband and I were traveling in Spain. A day of being doubled over with pain had me in the emergency room. The doctor there first thought I was having a gall bladder attack. I was trying to explain to someone who did not speak English that I was sure I had liver metastasis. They did an ultrasound. The doctor returned, smiling. He said, “Senora Mayer, you have gas.” My husband and I burst out laughing at the absurdity of my predicament.
I always think of that and I realize that while I still worry, it’s not generally an emergency and a delay of a few days or a week or two will not put me at further risk. After a while, some part of me just let go. I realized that what will be, will be and that no matter how much I would like to control it, I can’t. There is a certain freedom in that feeling.
I also put a lot of that energy into my work as a breast-cancer advocate. I try to focus on helping others. That turns the attention away from my own worries.
Moderator: Do you have any final comments for us, Musa?
Mayer: If you have been upset by some of what I’ve said, I’m not surprised. It was upsetting to me, too, to learn particularly that follow-up testing would not give me an advantage if I had a recurrence.
For more information on this and many other things relating to handling fear of recurrence, and for the wonderful voices of 40 other women sharing their experience and the way they’ve learned to cope, have a look at my book, “After Breast Cancer: Answers to the Questions You’re Afraid to Ask.”
You can contact me through the breast cancer mailing list at www.bclist.org or if you are dealing with metastatic breast cancer, at www.bcmets.org. These are both places to get your questions answered and to share your experiences. It’s been great talking with you today.
Moderator: “After Breast Cancer” is a truly wonderful book. I highly recommend it. Thanks to Musa Mayer for sharing her expertise with us. For more information and support, we have several message boards devoted to breast cancer. And please explore our many articles and archived Live Event transcripts on the subject of breast cancer.
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