Best Practices for Breast Cancer Survivors?
If you’re a breast cancer survivor, you may be wondering what you can do to help ensure you remain cancer-free. As a 20-year survivor, I’m embarrassed to admit that I’ve done little to protect myself from a recurrence. It’s not as though I’m expecting cancer to return, but I find it curious that I haven’t been the Patient Advocate for myself that I’ve always been for everyone else.
In part, I owe my complacency to my last oncologist. Once my cancer treatment was complete, he told me there was no need for future appointments and sent me on my way. While his lack of a follow-up plan was extremely unsettling, I’ve chosen to live with that uncertainty. Until now. I just decided that moving forward, I want to be more proactive about my cancer care because statistics show the greater the role that patients play in their care, the greater their chances of survival.
As part of my commitment to proactive cancer care, I made an appointment to see a surgical breast oncologist. When the day came, the woman who walked into the examination room was not the doctor. She was the doctor’s Personal Assistant. As soon as I realized that the doctor had opted out of meeting with me face to face, I made it clear that I would not leave the office until I met with her. I came looking for answers and I wasn’t going home without them. I wanted to know if there’s any value to getting a body scan. And, if so, how often? And what about blood tests?
She dismissed all of that as nonsense. “The fact that it’s been 20 years since you were first diagnosed bodes well,” she insisted. “If you were going to have a recurrence, it’s likely it would have happened within the first five years after your diagnosis.”
She explained that scans are dangerous — from a radiation standpoint. As I stood there, feeling vulnerable and anxious for some answers, she told me that if I suffered from anxiety around my cancer that I should seek psychiatric help and that she’d be happy to refer me to someone. My eyes welled up with disbelief.
Then I was told that if I was spiritually inclined, that I should turn to prayer. Or practice meditation. I still felt unheard. Her next suggestion made me want to fire her on the spot. She actually told me that if I wanted to feel better, that I should go out and kiss babies!
To wrap things up, she reiterated that there was no need to worry. “Just wait until symptoms present themselves to come in for a visit,” she insisted. “No need to come in before then.” I couldn’t help but wonder, “Does this sum up the medical community’s advice on proactive survivor care?”
In search of more empowering advice, I made an appointment to see a highly recommended integrative oncologist in the Bay Area. While making the appointment, I was asked about my medical records. Unfortunately, when I last searched for them, I had been told that they no longer existed. I was so disappointed with myself that I had not asked for a copy of all of my records before I stopped treatment. Should I ever have a recurrence, that information would be invaluable.
To my surprise and delight, the oncologist’s office was able to dig up at least some of my records! At last, I would have access to my medical history and exactly what happened during the blur that was my cancer care.
When I got to the oncologist’s office, the visit started with a pleasantly uneventful breast exam. Then I asked him about his follow-up protocol for breast cancer survivors. Of course, his answers were specific to my breast cancer; but they put my mind at ease. First, he recommended a number of blood tests that could be performed annually to determine whether the breast cancer had decided to come back in my liver or bones.
He also recommended establishing a baseline with two tumor marker blood tests. The first test would be a CA15–3. The second test, because of my BRCA genetics, would be an annual CA125. This test would be to rule out a primary peritoneal cancer, which he stated only occurs .1 percent of the time, but he warned that if you don’t catch it in time, the consequences are dire.
The doctor also stressed the critical role that good communication plays in follow-up care. “Patients need someone they can call, trust, and depend on. This is way better than putting them in a total body scan every year. And I don’t think the radiation of a total body scan is worth it as a birthday ‘I’m okay’ thing. But a scan, if you have a symptom, is a totally different story.”
Because estrogen fueled my breast cancer 18 years ago, he said that the single best thing I can do to protect myself from breast cancer is to pay attention to my “estrogen chemistry.” Since my ovaries were prophylactically removed, I have fallen into what he referred to as that menopausal metabolism rut — meaning that I have put on weight. Radiation also compromised my thyroid, which is being regulated with medication, but it is still probably contributing to my sluggish metabolism.
The oncologist explained that the more body fat you have, the more estrogen you will have. He diplomatically hinted that getting lean would be a huge part of my “successful journey.” To ensure an optimum outcome, he strongly urged me to consider giving up beef, dairy, and alcohol. I was disheartened. Time for some serious lifestyle changes, but at least that’s something tangible that I can do to in the hopes of warding off a recurrence.
After our 90-minute consult, I finally felt seen, heard, and understood! Most important, we had created a three-month, six-month, and annual action plan that made me feel far more protected and prepared than I did when I first walked into his office. Mission accomplished.
Below are some things that you can do to help protect yourself.
The American Cancer Society suggests this follow-up schedule for breast cancer patients.
After 5 years, they are typically done about once a year.
If you had breast-conserving surgery (lumpectomy or partial mastectomy), you will likely get a mammogram about 6–12 months after surgery and radiation are completed, and then at least every year after that. Women who have had a mastectomy typically no longer need mammograms on that side. But unless you’ve had both breasts removed, you still need to have yearly mammograms on the remaining breast.
If you are taking either of the hormone drugs tamoxifen or toremifene and still have your uterus, you should have pelvic exams every year because these drugs can increase your risk of uterine cancer. This risk is highest in women who have gone through menopause.
Bone density tests
If you are taking a hormone drug called an aromatase inhibitor (anastrozole, letrozole, or exemestane) for early-stage breast cancer, or if you go through menopause as a result of treatment, your doctor will want to monitor your bone health and may consider testing your bone density.
Other tests such as blood tests and imaging tests (like bone scans and chest x-rays) are not a standard part of follow-up because they haven’t been shown to help a woman who’s been treated for breast cancer live longer. But they might be done if you have symptoms or physical exam findings that suggest that the cancer might have come back.
The American Cancer Society warns that if symptoms, exams, or tests suggest a possible recurrence of your cancer, imaging tests such as an x-ray, CT scan, PET scan, MRI scan, bone scan, and/or a biopsy may be done. If the cancer recurrence is confirmed, your doctor may also look for circulating tumor cells in the blood, or measure levels of blood tumor markers.
(As I’ve already mentioned, my new oncologist prefers to test for blood tumor markers annually.)
The American Cancer Society also recommends that once you’ve completed your cancer treatment, that you ask your doctor for a Survivorship Care Plan that includes:
· A schedule for follow-up exams
· A schedule for other tests you might need in the future
· A list of possible late- or long-term side effects from your treatment, including what to watch for and when you should contact your doctor
· Diet, physical activity, and other lifestyle modification suggestions
If, for any reason, you are unhappy with your oncologist, you may want to consider finding another. If you don’t know one, ask around. When I was first diagnosed, I had to kiss two frogs before I met my oncological prince. Sadly, he’s since retired. Seems ridiculous that I’ve waited all these years to replace him, but I’m not looking back. I’m just breathing a deep sigh of relief and getting back to the business of living.
Jennifer Omholt is a professional writer, cancer advocate and 20-year cancer survivor writing a book for newly diagnosed cancer patients entitled, The Cancer Playbook: A survivor’s guide through the critical weeks after diagnosis.