What do you mean I have cancer? What!? I am not being treated!!? What is a lymphatic system?
This is just a sample of the questions that may be asked when patients and/or caregivers speak with an American Cancer Society (ACS) patient navigator based at the Mayo Clinic Stephen and Barbara Slaggie Family Cancer Education Center.
A cancer diagnosis can be overwhelming with multiple layers of concerns. As patient navigators, it is our role to provide nonclinical support to cancer patients, including cancer information, resources to help meet day-to-day needs, and emotional support. We assess for the immediate needs, address those concerns, and lay the groundwork for future or ongoing support. We start this by asking some basic questions: What can we help you with today? What is your diagnosis? Do you know what your treatment plan is? Would you like additional information? Based on the responses, we are able to direct the individual appropriately.
As we talk with the individual, we are asking additional questions to assess knowledge and level of health literacy. This allows us to seek appropriate documents and provide supportive explanations. On occasion, our patients or caregivers may have a medical background or are well versed in their specific disease type and may be seeking articles about research and the latest treatment options. In the education center, we have access to reference books, and the staff is trained to do basic literature searches on websites such as the National Library of Medicine and Medline.
If the individual wants to better understand the diagnosis, we have many credible options to offer. If it is a solid tumor, the ACS offers publications and detailed information on its website, www.cancer.org. We also use the National Cancer Institute (NCI), www.cancer.gov, and organizations with a specific cancer focus (eg, breast, ovarian, mesothelioma).
If it’s a blood-related diagnosis, we refer to the Leukemia & Lymphoma Society (www.lls.org). Its website offers many publications, either downloadable or to order. This includes general information on lymphoma, leukemia, and multiple myeloma. If the exact diagnosis is known (eg, mantle cell lymphoma, chronic lymphocytic leukemia), there are multiple publications on the website that provide information on specific types.
Terminology that seems of concern to many individuals are “watchful waiting,” “indolent,” and “smoldering,” as these imply nothing is being done to either eliminate or treat the cancer. There is often confusion over the meaning of grading and staging. Our role is to support the patient as we explain these words. We use the definitions based on the specific cancer types, referring to publications with written explanations and visuals. We may encourage the patient or caregiver to connect with one of the educators located in the education center, or we refer them back to their medical team for an in-depth clarification.
Once the treatment plan has been determined, the conversation becomes more about getting to the appointments, managing side effects, and the financial toxicity of cancer. Local patients who need rides are directed to the ACS Road To Recovery program. This program uses ACS volunteers who provide rides to and from treatment and cancer-related appointments at no charge. If that is not an option, we evaluate the use of other transportation resources, which may include bus passes or other community-based options. Many patients travel great distances, and some may travel by air. We seek options for free air miles but also provide information on location of appropriate volunteer pilot programs such as Angel Flight and Corporate Angel Network.
For those patients unable to return home every day due to the distance or treatment schedule, the ACS has many lodging resources available. Programs vary by location, but many include hotel discounts that offer free or reduced-cost lodging, Hope Lodge, and other housing listed in the ACS database. The ACS Hope Lodge provides free lodging and serves as a home away from home for patients with cancer who are older than 18 years. Each patient is to have a caregiver stay with them.
Side effects of treatment vary by the individual and the type of treatment. Appetite changes, mouth sores, dry mouth, hiccups, and sexuality are examples of topics discussed in the ACS book Caring for the Patient with Cancer at Home. It lists potential side effects in alphabetical order and provides information regarding when to call the medical team, what the patient can do, and what the caregiver can do at home to address the particular side effect. Another overview piece is Chemotherapy and You from the NCI.
Radiation can be administered in several different forms—brachytherapy, proton beam, stereotactic, intensity-modulated radiotherapy, to name just a few. Side effects may vary, depending on the type of radiation administered and the location of the disease. The NCI publication Radiation Therapy and You: Support for People with Cancer is helpful in explaining what radiation is and does. Two pieces about nutrition from the ACS are Nutrition for the Person with Cancer During Treatment and Complete Guide to Nutrition for Cancer Survivors: Eating Well, Staying Well During and After Cancer. The ACS also has a cookbook with recipes that work best for certain side effects. It is entitled What to Eat During Cancer Treatment.
Many patients struggle with hair loss. Some ACS patient navigators have a selection of free wigs at their facilities. The ACS tlc catalog offers a selection of low-cost wigs, with prices starting at $65. There are several styles and colors to choose from. At the time of this writing, the ACS was offering a $70 coupon toward the purchase of a wig from the catalog for those in financial need. Contact the ACS at 1-800-227-2345 to learn more. The tlc catalog also has sleep caps, mastectomy bras, and prostheses available.
ACS patient navigators also work with patients and caregivers to locate financial assistance programs. While every cancer type does not have a fund to help with medical expenses, there may be other options. Finding the appropriate type of funding and making sure the resources still have funds available can be one of the biggest challenges. The ACS maintains a database of over 32,000 updated resources, both local and national. The patient navigator plays a key role in updating and maintaining this database and works to find the best resources to meet the patient needs. If the patient is considered a young adult, there may be a fund specifically set up for scholarships. There could be some unique funds available, such as help with daycare or if the patient is a truck driver or from a specific county or state that has a cancer fund. Depending on insurance coverage, there may be copay assistance programs.
If the medical facility administering the drug therapy has not used the assistance program available from the pharmaceutical company that manufactures the drug, we are able to direct the patient or caregiver to the available resource. To avoid duplicate resources, we work closely with the social workers located at the Mayo Clinic who may have assisted the patient in this process. Both groups strive to provide appropriate referrals to each other. This communication aids in reducing duplication of resources, thus reducing frustration for all involved, especially the patient and family.
All the topics mentioned thus far can be overwhelming and burdensome. Our role as ACS patient navigators is to also provide appropriate emotional support. In some instances, this may be just listening. Sometimes talking through an issue or a challenge can be the start to managing it. It can also validate the concern or emotion.
We also seek to determine if the person would like to talk with a peer who “has been there, done that,” a chaplain, or if a referral to a social worker for distress assessment or a professional counselor or psychologist is appropriate.
Through the ACS Reach To Recovery program, newly diagnosed breast cancer patients can be matched with individuals with a similar diagnosis and/or treatment and age or life transitions. The ACS also has an online community called Cancer Survivors Network available for connecting with other patients or caregivers. Patient navigators are also able to search the ACS database for face-to-face support groups in a patient’s home area, if desired, or where the caregiver or family member resides. Sometimes the caregiver lives far away from the patient and would like a support group as well. There are resources for families with young children. These may include activity books that introduce a subject that is difficult to discuss, or books to read to children and for children to read. There may also be sponsored camps or activities for children who either are the patient or have a family member with cancer. One group that often appears to be at a loss is the adult children, those who are older than 18 years and may be in college or living on their own; they do not know their role. One document that addresses the role of adult children is the NCI’s Taking Time: Support for People With Cancer. It is also a nice piece for assisting in talking with others about your cancer diagnosis. The ACS web articles After Diagnosis: A Guide for Patients and Families and How to Be a Friend to Someone With Cancer are also 2 very helpful pieces when talking with friends and family.
Patient navigators also provide information on palliative care and clarify what hospice means, as well as where to find a hospice in your area. The most common misconception is that palliative care is the precursor to hospice. Patient navigators explain that palliative care is available from time of diagnosis and is there to give the patient the best possible quality of life while receiving standard care for their disease.
One thing we do caution individuals about is “googling” and then believing everything that appears on the websites. Patient navigators are able to educate individuals on how to find credible information online. Several things to look at on a website include: determining who owns or manages the site, when it was last updated, and what the goal of the site is. Also, is it strictly 1 person’s opinion, or is it based on research? Be aware of pop-up advertisements that may appear on the website that correspond with the topic being searched.
The ACS patient navigators are trained to address any and all of these needs based on where the patient is on their cancer journey. Often the patients don’t know what they don’t know, and our role is to introduce topics and empower them to act on their own, meeting their needs at the given time on that given day. We have no agenda other than to provide information, assist with day-to-day needs, and provide emotional support as patients and caregivers move along this cancer journey.
We do not have all the answers and cannot solve all the issues, but we strive to remove barriers and make a difference in the life of those we touch. For patient navigators, the best day is when they know they’ve made a difference because a patient or caregiver returns or calls back for additional assistance. We also love when patients return for a check-up and stop by to visit and let us know how things are going!