Long-Term Follow-Up and Survivorship Care

Haleigh Mistry

The National Cancer Institute says that “an individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life. Family members, friends, and caregivers are also impacted and included in this definition.”¹ This is important to note, as it helps to identify the long-term impacts of our cancer therapies.

Prachee Singh

I do agree that survivorship positively impacts patients and their family members. Why is it important to discuss long-term follow-up care with these patients?

Haleigh Mistry

In my opinion, survivorship is just as important as treatment itself. It may even be more important. My reasoning is that your patient goes through, let's say, 6 months or 1 year of treatment. Now they're in remission. In theory, they hopefully have years of being in remission and long-term survival. So it's important that they're not left with unacceptable toxicities, that somebody's helping the patient manage them, and that they remain survivors, and not just survivors of their lymphoma but survivors of their treatment and survivors of other potential cancers.

I think this is a good role for an advanced practitioner (AP): making sure our patients are continuing with their normal, age-appropriate cancer screenings. Are the patients getting DEXAs [dual energy X-ray absorptiometries], and is the AP making sure that they're not becoming osteoporotic? Are they getting their screening colonoscopies, and their mammograms and prostate screenings, and skin screenings, which are somethings that patients often don't do? APs can play an integral role in making sure that these patients are taking care of themselves. Because what's the point if we cure their lymphoma and they die of something else we missed because we didn't do a cancer screening?

At our institution, our follicular lymphoma patients are only eligible for our long-term survivorship clinic if they have stage I or II disease and if they've been in complete remission for 10 or more years. Regardless, the patients are continuously followed in the physician clinics. Patients with stage III/IV disease tend to have a higher incidence of relapse and, therefore, were recommended to have long-term follow-up by their oncologists. However, I do believe that we may be changing this to allow a much broader population of our low-grade lymphoma patients, including follicular and other types. That way, those patients can be managed and have the same opportunities that other patients with curable follicular lymphoma have.

Prachee Singh

This is a really excellent point, Haleigh. Survivorship clinic is really essential and quite a different experience for survivorship patients versus a standard office visit. For one, patients are often still getting moderate-dose radiation–based imaging such CT and even at times PET-CT, and the discussion is focused on imaging results. But what about these other complexities that are not necessarily being addressed in those visits? Saying, "Congratulations! You're still in remission and your labs look great. You're doing well!” may not be a complete discussion. In survivorship clinic, patients only undergo chest x-ray, as the focus is less on the lymphoma recurrence and more on disease maintenance as well as cancer screening.  Survivorship has a more comprehensive approach and really changes the outcomes for many of these patients.  Another benefit is that it minimizes radiation exposure by deferring higher-dose imaging unless there is true concern for relapse or recurrence.

Haleigh Mistry

In terms of what we’re dealing with, what are some of the long-term complications we see with patients who have been treated for follicular lymphoma?

Prachee Singh

There are many long-term toxicities we manage in our patient population, and one of the most common is peripheral neuropathy, which is a known toxicity associated with many standard of care regimens, such as R-CHOP (rituximab, cyclophosphamide, doxorubicin, vincristine, and prednisone). Another complication is unexplained fatigue, which may have numerous etiologies such as thyroid dysfunction. However, we do refer our complicated patients to our fatigue clinic here at MD Anderson Cancer Center.

You can sometimes see chronic lymphedema present in this patient population, especially among our patients who underwent excisional biopsies at diagnosis or radiation therapy in a region such as the inguinal nodes. Cardiotoxicity is another potential long-term complication and perhaps the most serious. We also screen for cardiac risk factors including obesity, hyperlipidemia, and carotid stenosis, and cardiovascular disease, which all may be compounded from radiation or anthracyclines the patients received as past therapy.

What's also quite important is that we look out for secondary malignancies. Skin cancers are very common, particularly in patients who received radiation or who are fair-skinned. Other common malignancies are breast, thyroid, colon, prostate, and renal cancers. We also address bone health, screening for osteoporosis, and osteopenia. And of course, and there are things outside of the physical picture, such as the burden that these patients may carry—the fact that they have survived their disease and others that they knew who went through their journey did not. This is called “survivor’s guilt.” Many patients struggle with long-term anxiety in terms of fear of cancer recurrence or reexperiencing their cancer journey. For some, these symptoms present almost like post-traumatic stress disorder. It’s important to have these patients evaluated by psychiatrists or psychologists as well as to encourage them to join support groups.

There's also the financial aspect: how much has been spent during their therapies and how much has been spent on housing, especially if they had to stay close to particular institutions to get their therapies, perhaps in a clinical trial? So there's quite a bit of the emotional aspect that I think doesn't always get addressed in a quick clinic visit. For those institutions that don't have a survivorship clinic, finding a way to incorporate that, and having an APP address these things, are really great ways to improve the patient care experience.

With regard to cancer screening, how are these patients getting set up for these pertinent examinations and testing?

Haleigh Mistry

Many actually are not. Many patients are under the misguided impression that screening for certain cancers has already been completed on some level, perhaps with prior staging imaging. Or patients may not even be aware of their increased risk for breast cancer or colon cancer and, therefore, have not undergone relevant screening such as mammograms or colonoscopies. Keeping up with vaccinations is also critical for these patients. They fall into a high-risk category and need to be instructed on which vaccines to obtain and when. These conversations may not have taken place during an office visit at the end of treatment or during their observation period before entering survivorship clinics. They may not be following up closely with a primary care physician (PCP) or deferring to the oncologist, or perhaps their PCP doesn't feel comfortable managing them now that they have this lymphoma that many still be regarded as a chronic condition or “incurable” even after long-term remission. With that said, the vast majority of survivorship patients with follicular lymphoma have not relapsed.  

One of the things that we can do as APs is give our patients a treatment summary, as well as a comprehensive treatment plan as to our survivorship care, and have them take that back to their PCP. In many instances, their PCPs may think we are doing the mammography, and, therefore, they're not ordering it. But in reality, there’s a gap. So again, I think survivorship care is extremely important. And I think it's often a topic that isn't spoken about or discussed properly. It’s therefore critical to have the survivorship care experience available to patients who are evaluated by community physicians through outreach and education.  

There are many resources that focus on long-term survivorship care of cancer patients. In fact, there are general survivorship guidelines provided by the NCCN that focus primarily on screening, evaluation, and treatment recommendations for the most common cancer treatment toxicities and long-term complications. There are guidelines from the Children’s Oncology Group as well, which focus on the pediatric population. The aim of these guidelines is to help bridge the gap in survivorship care and provide some framework that providers, including PCPs, can use to address the needs of the survivorship population.