Life After Cancer

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.