Congratulations! You have completed cancer treatment and have a new outlook on life. At MD Anderson, we know that being a cancer survivor brings its own set of challenges that affect every aspect of your life. It's our goal to make life after cancer the best it can be, and we have the resources to help get you there.
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Breast cancer treatment took a toll on Debbie Mendoza, but she regained her strength and energy with the help of Active Living After Cancer, an MD Anderson program for cancer survivors.
The retired bilingual teacher was diagnosed with metastatic breast cancer in February 2019. At her family’s urging, she traveled from her Austin, Texas home to seek a second opinion at MD Anderson. Here, she met with a multidisciplinary team of experts who recommended a treatment plan involving chemotherapy, a mastectomy and radiation therapy.
Between side effects from the cancer and treatment, Debbie was using a walker and supplementary oxygen daily by the time she completed breast cancer treatment in March 2020.
“My energy felt sapped, the lowest it has ever been,” Debbie says. “If I attempted to do anything physical, I would find myself needing to rest the next day. I wanted to do things, but my body was unable to keep up.”
A physical activity program designed for cancer survivors
Eventually, Debbie was able to stop using additional oxygen, but she tired easily and found herself exhausted by cleaning up the kitchen and other household chores. That’s when she heard about Active Living After Cancer.
The free 12-week program is offered online through community organizations. It gives cancer survivors a virtual support group-like atmosphere as they learn how to increase their physical activity, build healthier habits and cope with the challenges of survivorship. MD Anderson researcher Karen Basen-Engquist, Ph.D., recently published a paper in Cancer that showed the program successfully improves physical functioning, physical activity and health-related quality of life for participants.
When Debbie enrolled, she wasn’t sure what to expect or how much she’d be able to do, but the facilitator for her group said that even starting small could have a big impact.
“When I learned that exercise would help keep my cancer away and improve my lungs, I was sold!” Debbie says. “But I still wasn’t sure how I was supposed to exercise if I didn’t have any energy.”
Yadi, the group facilitator, told her to start with two minutes of exercise a day. “I thought that was rather odd. What could two minutes possibly do?” Debbie recalls. But she listened and set a timer. Before she knew it, two minutes a day slowly crept up to 10 minutes, then 10 minutes turned into 20 minutes.
Gaining the tools to maintain a healthy lifestyle
Each week, Debbie’s Active Living After Cancer group would meet online to learn a new exercise and behavioral skill, and to share their experiences with each other. The group gave Debbie something she couldn’t get from family or friends or a traditional exercise class: a sisterhood of survivors who understood the joys and struggles of life after cancer.
“The camaraderie of talking to other cancer survivors really helped because they understood what I was going through,” Debbie says. “The motivation Yadi gave us also helped. She wouldn’t push us, but she wouldn’t take no for an answer either.”
By the end of the program, Debbie was taking daily walks around the neighborhood with her dog as a warmup to home exercise videos. She enrolled in a group exercise class at her gym and began to improve her diet as well. The goal-setting and resiliency skills she learned over the 12-week course – plus a continued group text chat with her friends from the program – have helped her keep up the healthy lifestyle changes since she finished the program in July.
While Debbie is now free from breast cancer, during treatment, her doctors found a papillary thyroid tumor. It’s not growing quickly or causing side effects, so her care team is monitoring it, but Debbie feels prepared to face it if the situation changes.
“If I do need to get surgery for my thyroid tumor, I’m stronger now to do that,” she says. “I feel so much better and my confidence is higher. I definitely have more energy now than I did a year ago.”
Learn more about Active Living After Cancer and see upcoming classes.
Request an appointment at MD Anderson online or by calling 1-877-632-6789.
To a cancer patient, one of the most magical words in the English language may be “remission.” For those fortunate enough to hear it, it imparts not only a much-hoped-for dose of good news, but also a profound sense of relief.
But what does the term “remission” actually mean? And how does it differ – if at all – from “no evidence of disease,” or even “cancer-free?”
We asked medical oncologist Phat Le, M.D., for insight.
What’s the difference between remission, cancer-free, and no evidence of disease?
A lot of people use those terms synonymously, but “remission” and “no evidence of disease” (also known as NEOD or NED) are probably the closest by definition. Officially, both mean that no cancer is currently detectable in the body. That may be based on scans, bloodwork or some other kind of test, such as a breast biopsy or a bone marrow biopsy.
“Cancer-free” is a little more complicated, because it’s not based on something we can measure. Instead, it implies that not only is there nothing detectable in your body as cancer, but we also believe no residual cancer is left anywhere, so there’s no chance of the cancer ever coming back. And that’s a lot trickier to say, because there’s always at least a very slight risk of recurrence, if you’ve ever had cancer before.
So, how do doctors determine which term to use with a particular patient?
That’s really based on the doctor and what they feel comfortable with. Personally, I tend to use “remission” and “no evidence of disease” the most.
Does the type of cancer influence which term you use?
No. But it will determine which type of surveillance testing your doctor chooses.
With solid tumors like lung cancer, for instance, doctors might order a CT scan. But with prostate cancer and ovarian cancer, doctors might use blood tests to look for tumor markers or certain proteins. Doctors also look for evidence of diseased cells in blood or bone marrow samples with leukemia, lymphoma and other blood cancers.
Does the length of time a cancer survivor has gone without a relapse affect which term doctors use?
No. Not really. There are no special terms used for going 5, 10 or any other number of years without a recurrence.
But sometimes, doctors will declare a patient “cancer-free” after a certain amount of time has passed without a relapse. It usually coincides with the transition from active surveillance into survivorship, when patients begin needing fewer or less frequent check-ups.
What’s the one thing people should know about this topic?
Though all of these terms are sometimes used interchangeably, it’s important to ask your oncologist specifically what they mean. Because I may use it one way, and another physician might use it another.
It’s also important for all cancer survivors to be on some type of surveillance program. Some cancers are considered very low-risk, so if you’ve already gone 5 or 10 years without a recurrence, it’s highly unlikely that you’ll ever have one. But it’s still not impossible. So, you need to keep an eye on it, just to make sure that if the cancer ever does come back, you catch it as soon as possible.
Request an appointment at MD Anderson online or by calling 1-877-632-6789.
When found early, breast cancer can often be treated successfully. “90-97% of patients with early stage breast cancer are alive and well even 10 or 15 years after treatment,” says Carlos Barcenas, M.D., associate medical director of the MD Anderson breast cancer survivorship clinic.
But survivorship is complex and can bring new challenges. Here, Barcenas shares three insights to help breast cancer patients with the transition into survivorship.
1. Survivorship means something different to everyone.
“The definition of survivorship isn’t exact,” Barcenas says. “It depends on who you ask.”
Mostly commonly, the survivorship phase is thought to start after completing active treatment with surgery, chemotherapy or radiation therapy, if needed.
Historically, there has been a five-year mark during survivorship, Barcenas notes. “For several decades up until recently, patients who had estrogen receptor-positive breast cancer would receive tamoxifen or an aromatase inhibitor for five years to help reduce their risk of recurrence,” he says.
But Barcenas argues it’s an outdated way to view survivorship. “The reality is that doesn't apply anymore. We now sometimes give endocrine therapy for 10 years,” Barcenas says. The length of endocrine therapy is determined by the risk of the patient, but it shouldn’t deter patients from considering themselves survivors.
Survivorship is also very personal and can mean more than just a year mark in a patient’s cancer experience. “Some patients feel they’re survivors from day one,” Barcenas says.
2. Surveillance and side effects are the focus of breast cancer survivorship.
At MD Anderson, when breast cancer patients are five years out from their diagnosis, their care is transitioned to the breast cancer survivorship clinic. The attention on their care moves from treating the cancer to staying healthy and cancer-free.
“At that point, we’re really focused on monitoring for disease recurrence and managing lingering treatment side effects,” Barcenas says. Neuropathy and lymphedema can be long-lasting, and new side effects, such as heart problems and bone health issues, can occur even years after treatment.
“These are side effects that may never go away, so patients may need support managing them for the long-term,” Barcenas says. In terms of lymphedema, patients may need physical therapy, or in some cases, plastic surgery. Because these treatments are so specialized, Barcenas says there’s benefit to being seen in a survivorship clinic at a cancer center like MD Anderson that will have more familiarity and expertise.
In addition to the breast cancer coming back, there’s also the risk of a secondary cancer – possibly even a secondary breast cancer. That’s why Barcenas says it’s so important for patients to stay on top of preventive care and routine cancer screenings. Beyond mammograms, Barcenas suggests that breast cancer survivors follow recommended screening guidelines for colonoscopies, Pap tests and skin cancer screenings.
Survivorship clinics often have other specialists that can help patients stay healthy. These may include a nutritionist, exercise experts, integrative medicine specialists and psychologists. “Our job is to connect all these services for patients so that they can stay healthy in this next phase of their lives,” Barcenas says.
A survivorship clinic offers these services under one roof, but survivors may choose to see their primary care doctor instead, and that’s OK. “One important purpose of a survivorship care plan is to transition patients back to their primary care physician and back into their normal life as it was before breast cancer,” Barcenas says.
3. We’re here for you no matter what the future holds.
Transitioning to survivorship is a celebratory time, but it may still come with anxiety. Barcenas says many patients fear the detachment from their primary medical oncologist. “It’s not uncommon for patients to feel that if they’re not seeing their oncologist anymore that something may happen – like their risk of a recurrence changes,” Barcenas says. “But that’s not true.”
He says that your primary medical oncologist will always have a place in your care team, but they’re not needed in the survivorship phase and that’s actually a good thing. “Although you’re not going to be seeing them every year, they're still there and if there's a problem, they’ll always be there for you,” Barcenas advises.
“The most important thing to understand is that survivorship care is part of the plan from the beginning,” Barcenas says. “It’s our goal.”
Request an appointment at MD Anderson online or by calling 1-877-632-6789.
I've got a beautiful life to look forward to after cancer, and I plan to make the most of it.