What the Future Holds for Survivors
Hester Hill Schnipper, author of the newly revised After Breast Cancer: A Common-Sense Guide to Life After Treatment (Bantam), is an oncology social worker who counsels women with cancer. She was diagnosed with breast cancer 12 years ago. Then, unexpectedly, her doctor called with bad news: She had cancer again. Here, she answers our questions about how it feels to get a second diagnosis and what the future holds for survivors.
The Facts of Cancer Recurrence
Q. Aren’t more women living past the five-year mark? Isn’t that when a woman is told she’s cured?A. Yes, there are more survivors living past five years. But the word cured should never be used with a breast cancer survivor. Anyone who works in oncology doesn’t use it, and women who are diagnosed learn not to use it. There is still the belief that after five years, cure is a reasonable word to use with breast cancer. But with breast cancer, the most you can hope for is another year of NED — no evidence of disease.
There’s a sick joke in oncology circles that the way you know somebody was cured of breast cancer is when she drops dead many years later of something else. The challenge is to learn to live with uncertainty, and to live as if it’s not going to come back.
Q. What’s the likelihood that a woman who has already survived one bout with breast cancer will develop it again?A. Those who have already had one breast cancer have slightly more than a one percent chance annually of developing a second primary breast cancer. That risk doesn’t ever decline. Each year it’s one percent. If you had breast cancer once, clearly your body has demonstrated that it knows how to make a cancer. It makes sense that you would be at a higher risk than someone who has never had cancer, and that your body might choose to do it again.
Q. Is a recurrence a new cancer or a regrowth of the original disease?A. It’s a regrowth, but it’s also true that a woman can develop a new cancer. There are two general kinds of recurrences: a local recurrence, which means, for a woman who has not had a mastectomy and still has breast tissue, a few cancer cells were left behind after surgery or radiation. The new tumor is often in the same area of the breast that the first was, but not always. It’s still potentially treatable with surgery. It is also possible to develop an entirely new cancer in the same breast as your original cancer. That’s called a second primary breast cancer.
The other general kind of recurrence is a distant recurrence; it’s also called metastatic disease, because it recurs outside the original affected breast. (A local recurrence doesn’t count as metastatic disease.) Metastatic cancer means that the original cancer shows up in some other part of the body. So if you have breast cancer cells that show up in your lung, it’s not lung cancer, it’s breast cancer in your lung. And it’s treated with drugs that are used to treat breast cancer. Breast cancer that has spread or metastasized is defined as either lethal or terminal — whichever word is least scary. Although the hope is that you are going to be able to live for many years on treatment, you will be on some kind of treatment for the rest of your life.
Q. You faced the disease again after 12 cancer-free years. Is your situation typical?A. There are two truths about breast cancer recurrence. The first truth is that the longer you stay well, the more likely it is that you will stay well. Sixty percent of all recurrences happen in the first three years following diagnosis. But the remaining 40 percent can happen any time. The second truth is that it can come back at any time. Women who are estrogen receptor positive take Tamoxifen or an aromatase inhibitor, or both, as I did, for maybe a decade. And there is a feeling among experts that there may be more late recurrences than there have been in the past because those newer treatments keep any remaining cancer cells in check and create a longer disease-free interval. This is speculative, because studies haven’t concluded anything yet.
Dealing with Cancer Again
Q. How do you help a woman through a recurrence? What are the things she should know?A. The first thing to understand is that you are probably feeling the way you felt the first time. With any breast cancer diagnosis you think, "I’m going to be dead next week." But even with a diagnosis of metastatic or recurrent breast cancer, that’s not the situation. Many women do well and live long, normal lives, even though they will be showing up at the doctor’s office or the hospital for treatment regularly.
The good news is that she probably is already well plugged in to physicians, nurses, her caregivers, so it’s not the search for "Who can I find, who can I trust to take care of me?"
Q. Should you stay with your original team?A. When you are diagnosed with metastatic or recurrent breast cancer, it’s a good time to think about your doctor. If you’re confident and content, that’s great. But if you’re not, a recurrence can be a good time to change. Even if you really like your doctor, this might be a good time to get a second opinion, because there are different strategies for treating metastatic or recurrent breast cancer. You could consider a clinical trial — which some women look into the minute they are diagnosed with recurrent breast cancer. If your cancer is hormone receptor positive, you might choose to start with hormone treatments, which are certainly much less invasive. Or you might, like some women, choose to start with chemotherapy, thinking "Let’s try to hammer this," and then pull back to hormonal treatment when things seem to be under control.
Q. If a patient diagnosed with a recurrence is in a panic and wants to get a second opinion fast, is the clock ticking?A. A recurrence is not usually a medical emergency, although obviously it causes a psychological one. You really do have some time to decide. You shouldn’t wait months, but it’s perfectly okay if it takes weeks to see somebody. And it’s not as hard to get appointments as you think. Call the office and explain that you want a second opinion; many physicians are able to squeeze in second opinions faster than they’re able to squeeze in a new patient, because it’s a one-time thing.
Q. Do support groups work for women with a recurrence?A. I run the psychosocial oncology program at the Beth Israel Deaconess Medical Center in Boston, so I’m a big fan of newly diagnosed women finding other women who’ve had breast cancer to talk to. And I’m a supporter of women who have a newly diagnosed recurrence talking to somebody else who’s living through recurrent breast cancer. The caveat is connecting with somebody who’s had a similar situation. If you’ve just been diagnosed with a single bone metastasis, say, you don’t want to talk to somebody who’s got breast cancer spread throughout her body and is terribly sick.
A Caregiver’s Struggle
Q. Can you talk about how you felt with your own recurrence?A. I went to that appointment the way I always go to my yearly mammograms, not being very worried about it. My first breast cancer showed up as a lump, but not on a mammogram — which is not unusual — so I didn’t have a historically based worry. And it had been 12 years of perfect exams, so it was not at the front of my mind.
At our hospital, a woman who has already had one breast cancer has her film read by the radiologist while she’s there. So I left my appointment knowing that I needed a biopsy. I had it a few days later. Then I had to wait for the pathology report to come back. That gave me three or four days to be worried. The day the report came out, the radiologist tried unsuccessfully to get me, so he called my husband, who is the chief of oncology at the medical center, generally not a good move, because information should first be given to the patient, but okay given this weird situation. Then my husband called me on my office phone. It was 2:50 in the afternoon, and he said, "The report came in, and it’s not what we wanted. The surgeon can see you at three."
By the time I hung up the phone with him, people were starting to show up for a support group I was leading. I had no time to think about what to say. I just blurted out that I had a patient emergency and I had to leave, and please start without me.
My meeting with the surgeon was short — all we needed to talk about was when to schedule the surgery. I wasn’t interested in reconstruction, so there was no need to go through that whole conversation. I knew that I couldn’t face all that surgery. It works for many women, but it wasn’t the path for me.
When I walked back into my office, there was this lively support group discussion in progress. After a few minutes there was a pause, and somebody asked me if the emergency worked out. I took a deep breath and said, "Actually, I was the emergency." Then I told them what had happened: The pathology report showed a new primary cancer in the same breast where my previous cancer had been. As you can imagine, people were upset, because they like me and care about me. They were also scared to death.
Q. It’s complicated, because you’re a role model.A. Absolutely. I’ve been everybody’s life insurance or talisman, and I know that it’s been very soothing to lots of women through the years, women who don’t even know me, just to know about me or to see me walk through the treatment area and think, "Look, she had breast cancer umpteen years ago, and she’s fine." My recurrence really blew the lid off that sense of security. And everyone knows that my husband is the head of oncology here, and they wonder to themselves, "If they can’t even keep Hester safe, how are they going to keep me safe?" My experience has been very hard on my patients.
My surgery was the following week. A simple mastectomy without reconstruction is psychologically hideous, but as surgery goes, it’s not bad. They’re not poking around in your abdomen or anything. The recovery was pretty straightforward, and then I came back to work and started chemotherapy in a few weeks. That was harder. In spite of the advances in chemotherapy in the years between 1993 and 2005 — and certainly the nausea control is better — the chemotherapy itself is much more intense. And I was 12 years older. I’m 57 now. Physically, it was a much more difficult experience than it was the first time.
Q. What were the side effects? Did you lose your hair?A. Today’s drugs guarantee baldness, which I hadn’t had to experience before. I had learned from so many women how to handle that: I didn’t wait for my hair to fall out. Ten days after having my first chemotherapy, about a week before my hair would have started to fall out, I had my head shaved. I knew I couldn’t bear the slow, here’s a handful, there’s a handful. I told myself, just do it. But I found being bald excruciating. I hated the way I looked: I felt very public, and very vulnerable, at work. Yet at the same time, working in oncology is the best possible place to work, because half the people who are here on any given day are bald.
Q. It must be hard for patients to see you sick with their disease.A. It became an issue with every single appointment. For women I thought I would see just one time, I didn’t bring it up unless they did, although I would wonder, "Do they know?" If it was somebody I was going to see in an ongoing way, I needed to tell her, because she was going to find out. So it was very tricky clinically.
Q. Do you think your breast cancer has made you more effective as a caregiver?A. The first time, although I would have much preferred not to have breast cancer, it absolutely made me better at what I do. I don’t think the recurrence has done that. It’s just more of the same. Physically I feel fine. I don’t like the way I look. Before I shaved off my hair, it was brown and chin-length. Now it’s gray and so curly, I have to keep it very short. When I look in the mirror, I don’t know who I’m looking at, my hair is so different. I’m okay about the flat-chested part. I wish I could take credit for this phrase, but I stole it from somebody: "I feel as though I’m in the witness protection program." I look so different than I looked a year ago.
Q. How do you know what to hope for?A. You know, I’ve worried since 1993 about the possibility that I might die of breast cancer, so I’m still worried. But I’m not more worried. I know a whole lot more about the science and the biology of breast cancer than I knew in 1993. I became a very motivated student in the intervening years and took a fabulous course that the National Breast Cancer Coalition puts on for breast cancer advocates. It’s called Project LEAD and teaches you about the science of breast cancer. So I know enough to believe that my second breast cancer, as breast cancers go, was a pretty good breast cancer. There are always surprises — you never know for sure — but this ought to be okay. So I’m optimistic. But like every other women who has had breast cancer, I often think about it coming back.
Today’s technology can give you an idea of your risk. Here’s what to do, rather than lying awake at three a.m., worrying.
Know that the odds are in your favor. "Most women [85 to 90 percent] with small cancers won’t have a recurrence," says Lowell E. Schnipper, MD, chief of hematology/oncology at Beth Israel Deaconess Medical Center, and Hester’s husband of 11 years. "And the majority of those with larger cancers and lymph node involvement will stay healthy." But some will face cancer again.
Get the details. Doctors look at the size of the tumor, the number of lymph nodes involved, and how similar to normal cells the cancerous cells appear (this is known as the tumor’s grade — a high so-called nuclear grade usually means a faster-growing group of tumor cells).
Find out your receptor status. Pathologists run a series of tests to see if your tumor cells produce receptors that bind estrogen and progesterone, as well as a protein called the HER-2 receptor. "Twenty percent of all breast cancers produce too much of the HER-2 receptor, and those cancers grow faster and are often more likely to recur," Schnipper explains. (Those women are candidates for Herceptin.) "Oncologists use the test results to estimate the risk of future recurrence. You’ll use this information to decide with your doctor whether/which type of systemic treatment, in addition to local treatment, is appropriate," Schnipper says.
Put in some computer time. You and your oncologist will look at the data and come up with a prediction based on your age, your health, and the lab results. "Most oncologists use an online program, such as Adjuvant Online, to calculate the chances that a recurrence will occur," Schnipper says. It can also compare the projected recurrence risk of several treatments, helping you decide whether to go with hormonal treatments, chemotherapy alone, or a combination of hormones and chemo. The goal is to weigh benefits of a certain treatment against possible negatives, such as the odds you’ll have side effects.
Skip the body scans. "Survivors should have annual mammograms and breast exams performed by a physician. These detect cancer as often as 80 percent of the time," Schnipper says. "There’s just no point in obsessive scanning." Because finding a cancer three months earlier doesn’t usually increase life expectancy, frequent scans are not recommended unless a new problem is suspected.
Originally published in MORE magazine, October 2006.