Guiding You Through Your Cancer Diagnosis, Treatment & Survivorship
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If you have ever been told you have cancer, you probably remember that dreadful feeling, as though the bottom has just dropped out of your life. Once you heard the word “cancer,” whatever the doctor said from that point on was background noise. You had to process this frightening moment. The family member or friend who may have been with you was equally stunned. First, the shock. Then the questions: Will I die? What treatment do I need? Is chemo as bad as I’ve heard? How will I pay for it? How will I tell my kids? Are they sure it’s cancer?
It quickly becomes clear that cancer is not just a health problem; it is a disease that affects you emotionally, physically, and spiritually. It affects your whole family. It leaves you feeling frightened.
At Mercy Cancer Center, you do not have to feel alone. Mercy offers Cancer Nurse Navigators. If you have never heard of a Nurse Navigator, it is exactly what it sounds like:
A nurse who guides you through the dizzying array of concerns that come with a cancer diagnosis.
“Many times I have been asked how I do
what I do every day. The answer is quite easy.
As the Nurse Navigator in our breast center, it
is the patients that are my reason. Knowing that
in some small way I made the experience of breast
cancer a little easier is all the reason I need.”
– Diane Wofsey, Breast Nurse Navigator
Before cancer, you probably had a primary care physician that you visited when you had a cold and for an annual physical. After cancer, you may have medical oncologist, radiation oncologist, pain management specialist, endocrinologist, geneticist, psychologist, physical or occupational therapist, pulmonologist, surgeon, gastroenterologist…and the list goes on. Suddenly, instead of an annual physical, you are having lab work drawn every week, CT scans, physician appointments, and any number of other appointments in a day. You have a long list of medications that you can’t pronounce or afford, much less keep on schedule.
This is the place for the Cancer Nurse Navigator. Navigators are available to you at Mercy Cancer Center at any point in your cancer journey, from pre-diagnosis screening onward. They can help you organize your care, answer questions about your treatment or side effects, and help you access needed services. Sometimes, a Navigator is just a shoulder to cry on when you need it most.
Pre-Diagnosis and Screening for Cancer
Perhaps you have a disconcerting symptom and need to have it evaluated. If you have risk factors such as smoking, or a strong family history of cancer, you may be especially worried about symptoms such as weight loss, cough, a new pain, or a lump you felt when showering. You might have a medical doctor to refer you to necessary services, and insurance to pay for a full evaluation. You might not. A Cancer Nurse Navigator can help you access the screening and workup that you need to put your mind at ease, or to confirm your suspicions.
Cancer Nurse Navigators are experts at finding the services you need.
The Navigator may help you find a charitable organization or financial aid program so that you can afford necessary testing. On the day you have that test, you might be frightened. A Cancer Nurse Navigator can hold your hand if needed. She may answer questions about what to expect. She will likely offer you emotional support as you anxiously await test results. Once you hear the “c” word, a whole new world of fears and anxieties opens before you. You might feel like you are on the edge of a cliff. Nurse Navigators are there with a safety net.
Cancer Diagnosis and Treatment
Your identity has changed. You are now someone who has cancer. What next? Perhaps you are struggling with how to tell your family and friends.
“I tell all of my patients, when you don’t know
Maybe you don’t know how to talk to your children. There might be well-meaning people in your life who try to advise you a little too much. Your Navigator will provide you with information on how to talk to others, and may even have a “practice session” with you. Your Navigator may refer you to appropriate community services to help deal with complicated family dynamics.
You have to find the right doctor and treatment for you and your disease. Navigators can help. In addition to helping you locate the services you need, your Navigator might help you find transportation to those appointments and co-pay assistance to help pay for your care. Your Navigator understands that this is a frightening time for you. These are uncharted waters in your life.
As your treatment plan begins to take shape, you may wonder what it will feel like, what side effects to watch for, when to call your doctor.
Your Navigator spends time explaining these things to you in a way that you understand. She answers your questions in terms you can relate to.
When you come to an appointment with a stack of papers and medical bills in your wallet or purse, your Navigator helps you organize them, determine which papers you need to bring with you to each appointment and which papers you can file away at home.
Confused about which medications treat which side effect? Your Navigator will help you understand, perhaps making a medication chart with you. Your Navigator may help you understand which medications to take on schedule, and which ones are taken only when needed.
When you have side effects that bring you to the hospital, your Navigator is going to visit you. Your Navigator might realize there are new needs you have at home,and help connect you with a case manager who can make those arrangements. Maybe you simply need a familiar face among all of the hospital staff. Your Navigator is that familiar face.
Navigators understand that getting through treatment means not just taking care of your physical needs, but helping you feel emotionally well, too. Your Navigator may refer you to Mercy’s complementary therapy program for Reiki, a relaxation massage, or color light therapy. These services are designed to help you deal with the stress of a cancer diagnosis.
At times, your need for emotional support may be more than a Navigator alone can provide. Perhaps you need to speak to other cancer patients who are going through the same issues you are. Your Navigator will likely refer you to one of Mercy’s cancer support groups. For some, this network of support is not enough. In order to cope, more is needed. Your Navigator is very skilled at identifying when the measures she has taken to help you are not quite enough, and will refer you to a counselor adept at managing the unique emotional needs of the individual with cancer.
As treatment progresses, it may become clear that continuing to work is not possible, at least for a time. In such situations, your Navigator may help you determine what benefits you need to apply for, or even help you fill out the daunting disability paperwork online.
Your Navigator may connect you with clinical trials staff to help you and your physician find innovative approaches to the treatment of your disease.
Your Navigator is like a touchstone throughout the treatment process: answering questions, providing information and reassurance, supporting you each step of the way as much or as little as you require.
As you begin to settle into your treatment routine, you will become an expert at managing your cancer care. You may need your Navigator less and less for the day to day management of your cancer. Your Navigator’s goal is to help you through the process, and give you the tools to help yourself.
The National Coalition for Cancer Survivorship (NCCS) defines a cancer survivor as “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 by the survivorship experience and are therefore included in this definition.” Mercy Cancer Center recognizes that your journey with cancer is personal.
We also recognize that your journey as a survivor is personal. There are more than 12 million cancer survivors in the United States. As technology for early detection and treatment of cancer improves, there will be many more cancer survivors in coming years. Your needs throughout treatment were unique to you. Your needs after treatment will also be unique.
For many months, you have seen a cancer doctor or nurse almost daily. When you finish treatment, you may feel some anxiety at not being constantly
“It’s not just a job for any of us. It’s something we’re passionate
monitored. What now? What if the cancer is coming back? You were doing everything to fight your cancer, but now that treatment is done, you may feel as though you are doing nothing but waiting. For some, anxiety begins to mount when they are told they will not need to see anyone in their cancer care team for several months.
Rest assured, your Navigator is still available to support you as you begin your “new normal.”
One of the ways your Navigator may help reassure you that you are doing well post treatment is to make sure you have access to a Survivorship Care Plan. This document is a summary of the treatment you have had. However, it is much more than that: it is a surveillance guide, reminding you and your doctors what symptoms to watch for and what routine monitoring you will need. The care plan is reassuring because it reminds you that you are not simply waiting. You are fighting your cancer, but you are fighting it differently. Now, you are pursuing a healthy lifestyle and focusing on recovery. These steps are just as important now as chemotherapy, radiation, and surgery were when your cancer journey began.
No matter where you are in your cancer journey, Mercy Cancer Center is here for you. Cancer Nurse Navigators are available to walk the journey with you, wherever it may lead, however long it takes, no matter how bumpy the road.