As an educator, I automatically start assessing the patient and their support system (any family and friends who are with them). I begin by finding out what they know about their diagnosis. In this initial conversation, I look for clues, including words used and their body language. I have to keep in mind that they may be afraid, emotional and exhausted at the point when I see them. I want them to be comfortable with me, so a calm and listening ear is sometimes what is needed at the beginning. By taking time to listen, I can find out if they are struggling to understand something about their situation, or if they are lacking resources (such as financial support). I explore with them what information and resources they are seeking, and also ask how they like to learn new information (by talking to someone one on one, reading, using the Internet, DVDs or group classes). Together, we go forward from here, with more specific information related to their immediate needs. I think it is better to not overwhelm a person with too much information at one time. I always leave them with ways to connect to additional information and education resources if needed later on, such as our Mayo Clinic Cancer Center website, online newsletter, phone number or a local resource that is close to their home if needed.
With a newly diagnosed patient, I start with basic information about their diagnosis; including what tests they can anticipate, how their cancer is staged, and potential treatment options. I provide written information about their diagnosis so they can take it and read again later or share with their family. We might talk about how to talk to their family and friends about their cancer diagnosis. I also cover how to communicate with their doctor, including how to ask and track their questions. I might suggest that they bring a friend or family member with them to their appointments to take notes and keep track of key points for later. I remind them that it is normal to feel uncertain and afraid, but also reassure them that their healthcare team will expect this. I also provide resources that we have available at Mayo Clinic that address their treatment-related questions – such as our group classes on chemotherapy and radiation therapy or other resources that may come up later. I introduce them to an American Cancer Society Navigator who can assist with additional resources such as housing needs, transportation and financial support. I give them our patient calendar that features other classes and sessions covering everything from mind-body techniques to nutrition and survivorship. At the end, I ask if there is anything else that they would like to know and invite them to return later as often as needed to learn more about what they hear about their diagnosis and treatment. Each person has a unique experience, and I let them know that this is the case - no two people with the same diagnosis will have the same exact treatment recommendations, experiences and outcomes.
My primary goal is to meet all of their educational and informational needs. In doing this, I usually start with their baseline knowledge – what do they know about their diagnosis? After finding out what they know, we discuss what information is missing? What questions do they have that are causing distress? I also stress using reliable sources when seeking new information. We talk about good Internet sources, research-related sources and general information and support. I also reassure them that they are not alone, and connect them to a patient mentor, navigator or advocate if they are interested. Most of all, I want them to be comfortable with their diagnosis and treatment plan. I want them to understand their diagnosis as much as they would like to understand it…and meet them on their level. Some patients want to know every detail, to the cellular level, while others only want to know basic information. I also let them know that they will have good days and bad days, and that this is OK. Cancer does not follow a predictable course, but we can try to anticipate a patients needs as much as possible by letting them know that we are with them along the way.
I think that this is a difficult situation for most patients. If their treating oncologist or surgeon is presenting them with the choice, it means that the research shows that for their stage of breast cancer (usually early stage cancer), either option is possible as a potential effective treatment. A good approach is to take the time needed to think carefully through the two options and understand the potential risks and benefits. Talk through the procedures with the surgeon to understand the recovery and post-operative period. They may want to speak to other breast cancer patients who have experienced these procedures as well, just to get an idea of what helped them decide and how they dealt with the surgery and post-operative period. I also explore with them their personal and family history of cancer. I would encourage the patient to think about their primary concerns. I would also ask about their spouse or partner’s feelings…have they discussed the options together? What are their physical and sexual concerns? Breasts can be an important part of a woman’s identity. Do they understand reconstruction options if they choose mastectomy. Is recurrence of their cancer a concern? Also, is radiation also a part of the equation? In exploring the options, it is important for the patient to understand fully what they are deciding. Resources, reading materials, images and decision guides can be helpful as they are weighing their options. Mayo Clinic has an excellent book – Mayo Clinic Guide to Women’s Cancers, currently available, and soon to be revised and reprinted in October of 2012 as the Mayo Clinic Breast Cancer Book. Mayoclinic.com website has excellent resources and images that describe both procedures as well as the reconstruction process.
Just prior to treatment starting and the first 2-3 weeks of treatment are probably the most challenging time periods. Patients and their families are trying to keep up with chemotherapy or radiation schedules, blood tests, timelines, and side effect management. It can be a time when the reality of their cancer diagnosis sets in. Patients start to feel the side effects of treatment and their daily life and schedule changes dramatically. This is the time when new learning is taking place almost daily. Education and resources on what to expect during treatment are vital during this time. It is important that patients and their support persons understand common and unusual side effects from treatment, when to call the health care team (for example with neutropenia and fever), hair and skin care issues, any special diet to follow and other precautions. The other period when education and support are needed is when treatment is ending. Patients may feel at a loss when they no longer have the close connection and frequent check-in visits with the health care team. Support and resources on what to expect during this period of survivorship are also important to remember.
As patients complete treatment, they may have mixed feelings. Completing treatment means no longer having the stress that comes with frequent visits and the short-term side effects of treatment. Patients may experience a sense of relief and freedom during this time. However, some people also experience anxiety and worry about test results in the weeks and months before the next visit. After this period, annual check-ups and tests, then patients move into an even more undefined period after 5 years; long-term survivorship.
Research shows that more than 60 percent of cancer survivors report fear of their cancer returning. Cancer survivors also live with long-term physical and psychosocial concerns. A few of the most common concerns are fatigue, sleep difficulties, sexual concerns, and worry about financial resources. Patients can take an active role in this period of survivorship.
Here are a few ideas for patients:
- Stay informed by keeping track of the latest research on your cancer type. Stay in touch with your regular doctor, ask questions, get regular screening tests and keep track of your medical history. Find a survivor care plan that works for you and start to work on this with help from your care team.
- Be healthy by eating well, staying active and incorporating good strategies to deal with stress. Find resources for community cooking classes to learn new strategies to incorporate healthy food choices. Participate in physical activity that works for you (walk, bike or swim with a friend at least 3 times a week).
- Stay in touch with your emotions. Take note when you start to feel anxious or fearful of your future. Find ways to deal with the negative emotions. Explore relaxation techniques such as yoga, tai chi or meditation.
- Take control by seeking financial resources, asking for assistance with long-term planning and being proactive with planning for the future.
- Be aware of any changes in your body or health status. Don't wait until your next visit to have a new symptom or concern checked out. You're the one who understands your body best.
When a patient is first diagnosed with cancer, it is like being on a roller coaster. It's normal to be emotional when you hear the words cancer. It can bring about feelings of shock and fear of the unknown. Take time to understand your diagnosis; don't be afraid to ask questions, seek information and resources until you are fully comfortable with your situation and the proposed treatment plan. Ask a close friend or family member to attend your appointments with you to take notes or keep track of your questions. Information sources should be reliable, ask your health care team for good sources and seek out the nearest cancer resource library to find an educator, patient navigator (a great resource is the American Cancer Society Navigator Program 1-800-2345) or social worker (ask about this at your Cancer Center). Remember that every person has an individual course of treatment and recovery. Focus on one step at a time. Most importantly, remember that you are not alone. Seek support along the way from those that love you.
Mayo Clinic has the full complement of services for cancer survivors and at this point is still loosely organized with referrals to specialty services on an individual basis. Services include pain clinic, nutrition counseling, prevention clinic, genetic counseling, psychological counseling, and complementary and integrative therapies (such as acupuncture, massage and mind-body techniques). At Mayo Clinic, many of our patients come from other parts of the country and the world. This means that many times, our patients travel back to their home community after treatment is completed.
To assist with the transition into survivorship, in January of 2012, Mayo Clinic Cancer Center designed and is now offering a class to support cancer patients with a focus on moving forward after cancer treatment. As patients complete treatment, they are referred to attend the class along with their family members or support persons. If they are not able to attend the class, a survivorship booklet and care plan is provided to help and support them through this period. The survivorship class is designed to help:
- Learn tips for promoting a healthy lifestyle after treatment - Discuss techniques for managing difficult emotions - Identify potential long term or late effects of cancer treatment - Understand the importance of becoming an active participant in follow-up care
The survivorship class addresses:
- Defining a "new sense of normal" - Bridging the disconnect between your feelings and the expectations from others (family, friends, co-workers) - Incorporating wellness activities into your daily routine - Potential late side effects from treatment - Dealing with fragile emotions, living with uncertainty and addressing the fear of recurrence - Finding your way back to work/life balance
We are just discovering what works best for survivorship programs and resources; therefore it’s very much a work in progress. As patients are educated on the period of survivorship and what to expect, my hope is that they will be active in asking their health care team for support and resources needed.
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