Registered Nurse/Nurse Practitioner/Clinical Director from the Dana-Farber Brigham Cancer Center
What are the most frequently asked about topics regarding survivorship for follicular lymphoma patients?
People expect that once they have been diagnosed with cancer, it needs to be treated and treated aggressively to get rid of it and to make sure it doesn't come back but follicular lymphoma is not always treated the same way as other cancers.
One of the most difficult things about follicular lymphoma is that it is often more of a chronic disease. You have to treat it like a different animal. If it's not aggressive we tell patients, "We'll follow you until it gets bad enough that we want to treat it." This approach is often called 'watch and wait,' which can be very emotionally and psychologically difficult for patients to understand and deal with because they don't have an action plan they have a waiting plan. One of the most important parts of survivorship for follicular lymphoma is making sure patients are able to cope with that type of an approach.
For me, one of the most important parts of follicular lymphoma survivorship is acknowledging that it can be very stressful psychologically upfront so the patient knows what to expect and knows that their feeling are normal.
Frequently, after their treatment, patients want to know, "When is it going to come back? Is it going to come back?" Those are really difficult questions to answer because everyone is so individual. Trying to get people comfortable with the unknown is one of the challenges we face as health care professionals.
What is your take on life expectancy curves and their usefulness?
Life expectancy curves can be used to put things in perspective for survivorship. Patients should understand that there is a natural timeline for follicular lymphoma; but our goal is to reset the clock. If a patient has a poor timeline because they have an aggressive disease, that's an indication that more aggressive treatment is needed and will change the natural history of that timeline. Someone with an indolent disease and a longer timeline might have a watch-and-wait approach where we make sure the disease doesn't change and become more aggressive.
That's why it is important to discuss the emotional impact of 'watch and wait.' Someone that doesn't need treatment may have a poorer quality of life because they are constantly thinking about their disease and cannot really go on because they're so overwhelmed with it. We want patients to live a long time, but they also need to make sure their quality of life is good. These two things go hand in hand. If people aren't enjoying the life they have, whether it's long or short, that's very upsetting for me.
What advice do you have for survivors, both clinically and socially?
The most important thing is having an open line of communication with your care team and feeling comfortable with them. With treatment for follicular lymphoma, you're going to meet with your care team regularly for years and years, so you want it to be a comfortable situation where the patient feels comfortable speaking openly and honestly about how they are feeling. It's important to make sure the patient always knows their treatment options. It's also okay to seek a second opinion, especially with follicular lymphoma. It's okay to do research, talk to others and to seek other professional opinions, including from academic medical centers to make sure everything matches up. It's important to know what treatment you've had because treatments can cause different long-term effects. Exercise and diet are important as well because you're likely going to live a long time with Follicular lymphoma. Patients should make sure they get mammograms, colonoscopies, have a prostate exam etc., so you make sure you maintain your overall health.
It is normal to feel anxiety and depression after getting a follicular lymphoma diagnosis but anxiety and depression can cause people to make decisions that may not be in their best interest. We need to ensure that every patient diagnosed with any type of cancer knows it is okay to talk about their concerns and fears. Getting the right treatment for anxiety or depression should be considered a priority.
What resources are available for survivors?
One of the best things for people, if they've had treatment, is to ask for a treatment summary and a care plan. A treatment summary is simply a list of what the patient has been treated with. The care plan goes over what the risks are going forward with the exposures you've had, some things to keep an eye out for, how often visits will be, and what labs may be needed. It is a roadmap of how you're going to be followed. Even if you have not been treated, or you're newly diagnosed, you could ask for a plan in writing which includes such information as, how are you going to follow me, how often are the visits going to be, how often is imaging, what blood work are you going to need. Journey Forward is a great on line care-plan tool for healthcare providers and patients who have recently completed active treatment for cancer.
The Lymphoma Research Foundation (LRF), the National Comprehensive Cancer Care Network and the American Society of Clinical Oncology have a lot of great resources available on their website as well. The Dana-Farber Cancer Institute website also has some survivorship resources that patients and caregivers may find helpful.
Are there any special concerns or aspects of survivorship that follicular lymphoma patients should be particularly aware of?
It is very important for people with follicular lymphoma to monitor their risks for infection. Treatment with medications can lower the immune globulin (IgG levels) which puts people at a higher risk for infection. Certain treatments may also affect bone health and so it is important to monitor this.
Patients should also discuss fertility. Sexuality can be affected by certain treatments which can cause premature menopause in women or lower testosterone levels in men. Even the psychological impact of being diagnosed with cancer can affect a person's libido or body image, and that can affect their sexual function. This can be a huge issue and can affect relationships.
Can you discuss medical planning for the future of follicular lymphoma patients as well as long-term survivorship?
Besides following blood counts and the size of your lymph nodes for infection, it is important to remain connected with your primary care doctor and get all of the necessary screenings. Patients should get the normal health screenings as part of the standard medical survivorship follow-up. If a patient has diabetes, heart disease or high blood pressure it is just as important to manage that as well as their cancer. Poorly controlled diabetes will cause more problems than slow growing follicular lymphoma and may also affect future treatment options. The healthier you are, the more options you have so a healthy diet, exercise and maintaining a good weight are very important.
How did you become involved with the Lymphoma Research Foundation and why would recommend a patient become involved with the organization?
I got involved with LRF when I was asked to give a talk on survivorship which is my area of expertise. I started working more frequently with LRF because I was caring for a lot of patients with lymphoma. I found that they had a comprehensive approach to educating patients that I really liked. The fact that they are a "Research Foundation" is great, but does not overshadow their commitment to educate patients. That for me is what it's all about. I think that knowledge is power. LRF offers people the knowledge they need to become empowered and to be able to advocate for themselves which is ultimately what we want.