Coping With Oral Cancer

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Coping with oral cancer can be challenging, not only due to the rigors of cancer treatment, but because we rely on our mouth, tongue, and throat to eat, drink, and even breathe. Emotionally, being told you have cancer is devastating, and affects every aspect of your life. The physical side effects of the cancer and treatment can interfere with living throughout each day.

Socially, cancer changes things, and while you may develop new friends, disappointment is common as older friends sometimes disappear.

And while all of these emotional, physical, and social challenges are happening, practical matters ranging from insurance coverage, to work, to finances, to family responsibilities must be fit into an already overloaded schedule. What can you do to manage and cope with your cancer so you can live as well as possible during treatment?

Fortunately, survivorship, or "living your best life with and after cancer" has become recognized to a much greater degree in recent years. As survival rates, especially with HPV-related head and neck cancers have improved rapidly, concerns over long-term needs have surfaced. If you are feeling discouraged wherever you are at in your journey, especially as we take a look at these needs, keep in mind that there is good news as well.

We now have evidence that (as had previously been noted in some other cancers), experiencing cancer changes those who have oral cancers in positive ways as well.

Emotional

We don't need to tell anyone that cancer has a tremendous impact on us emotionally and psychologically. Cancer brings to light our deepest fears, at the same time that we have to clearly and objectively choose the best treatment path possible; all without a degree in oncology.

We will take a look at some of the common emotions, but please note that you don't have to be brave. You don't have to have a positive attitude. You don't need to be anything anyone else says you should be. Everyone copes with cancer differently, and the most important thing you can do is honor yourself and be real. Cancer isn't fair, and sometimes, as teens commonly say, it sucks.

Bumpy Emotions

It's a worn-out cliche, but comparing a diagnosis of cancer to a roller coaster ride is very fitting. Your emotions may go from very high to the bottom of low in a matter of days or even minutes. Frustration is common, as most of us live overly busy lives even without adding cancer to the mix. Of course, we bring these emotions within our contact with others (who are often similarly traumatized by the diagnosis), and tensions can mount. First, we need to dispel one myth.

You Don't Always Have to Be Positive

It's worth repeating that you don't always have to have a positive attitude. Unlike the "advice" you may hear from often well-meaning people, it's simply not true that all you need to survive cancer is a positive attitude. In fact, we don't have any studies that tell us survival is better if people walk around smiling all the time.

Instead, it's important for people to honor the true emotions they feel. If you've ever held back on expressing negative emotions in the past, you've probably seen what can happen.

We were designed to share our lives in community as genuine people, not as mannequins with a phony smile. Of course, not everyone is comfortable allowing a friend to vent. But it's very helpful with cancer to find a non-judgmental friend with who you can share everything on your heart. A friend that can simply listen, and doesn't feel a need to fix something that can't be fixed. Rather than stuffing your feelings of anger, frustration, resentment, and more, talk with that friend.

Being open is the first step in learning to let go of the parts you can't control.

When Life Gets Hard

Most people who have lived with cancer will tell you that there are times it barely seems possible. These times can appear almost randomly, and may occur when your tests are looking good as well as bad. We've learned that roughly a third of people with oral cancer experience significant psychological distress while going through treatment for the disease.

Sometimes counseling can be very helpful, and it's been argued that anyone facing cancer could benefit from at least a session or two. Unlike many areas of life, there's no training ground for living with cancer. It's instant on the job training, often in a foreign language referred to as medicalese. Your cancer center may have an oncology counselor who is familiar with the psychological impact of cancer. Through working with other people with cancer, these therapists often have tips and ideas that can help you cope, without feeling like you're starting from scratch and re-inventing the wheel.

In recent years, technology has made counseling for people with cancer even easier. Many oncology counselors now offer counseling via Skype, phone, or online, so that you don't even have to leave home.

Not everyone finds comfort in talking to a counselor, but there are still coping strategies that can help as you face these trying times. You may wish to begin journaling your cancer journey, and use pen and paper to express what is in your heart and causing the most discouragement and anguish. Through journaling, many people have become more aware of the silver linings of cancer along the way as well, and begin to look for more. If you can't think of anything positive that has come from your cancer journey thus far, try to think of someone you enjoy who you would not have met had you not had cancer. Some people find that pursuing a new passion, or nurturing their spirituality helps; anything that can take your mind off of the day to day living as someone with cancer, if even for a moment.

Physical

Oral cancers are one of the more challenging cancers to face physically, whether your treatments involve surgery, chemotherapy, radiation therapy, or other treatments. We will share some tips on coping with the more common physical issues, but one of the best ways to make sure your physical symptoms are optimally controlled is to carefully select a cancer care team that has your back.

Choosing a Cancer Care Team

If you have recently been diagnosed, one of the most important steps is to find a cancer team you can trust. Just as plumbers vary in their expertise, medical doctors vary as well. Even specialists within a field such as ear, nose, and throat (ENT) often have special interests and strengths.

Finding a surgeon with expertise is especially critical with oral cancers, such as tongue cancer, as experience and recommendations may vary widely. A surgeon who is more experienced may be able to best preserve function in the region of your cancer, reducing the long-term difficulties that can occur with activities such as talking and eating. When choosing a surgeon, it's okay to ask about how many of the procedures he or she has performed.

Getting a second opinion can also be very important. Not only may this allow you to better understand the different methods by which your cancer can be treated, but can give you confidence that you made the right choice if you should begin to question down the road. It's often recommended that people get a second opinion at one of the larger National Cancer Institute-designated cancer centers. These are centers of excellence where specialists are up to date on the latest treatments. They also often have access to a greater number of clinical trials.

Since many people do well and go on to survive for years and decades, it's imperative to talk to your doctors not only about the short-term side effects but the potential long-term side effects of cancer treatment as well.

Advocating for Yourself

Even if you are someone who is quiet or shy, learning to advocate for yourself in your cancer care can make a large difference both in the control you feel over your treatment, and possibly in outcomes. If you have difficulty standing up for yourself and asking questions, find a friend or family member who would be willing to advocate for you. Having someone with you who can take notes and ask questions is priceless, as amidst the anxiety of cancer it's easy to forget even your most pressing concerns.

Taking the time to learn about your cancer is equally important. If you aren't sure how to begin finding good cancer information online, ask your oncologist or surgeon what she would recommend so that you can learn more.

Eating and Drinking

Depending on your particular cancer and the specific treatments your undergo, there are a number of issues that can arise. Some people require a nasogastric tube (NG tube) or gastric tube (G tube) for nutrition during treatment and while healing. Even if you are able to eat, you may experience difficulty swallowing (especially if you have radiation) and a very dry mouth. Talking with an oncology nutritionist at your cancer center can be invaluable in guiding you through these symptoms. She may have some tips to help you if you feel like you may choke, and can talk to you about coping with the sometimes panicky feelings those sensations can cause. Your doctor may recommend a soft diet, as well as artificial saliva to keep your mouth moist and comfortable.

Due to dryness and other factors, it's very important to practice good dental hygiene (though not always comfortable). In addition to difficulty with swallowing or chewing, and a reduced appetite, treatment for oral cancer can result in problems with taste. Surgery and the loss of tongue tissue can lead to a loss of taste, and chemotherapy can cause an uncomfortable sense of taste that has been coined "metal mouth." Dietary changes for taste dysfunction can help you cope with both of these concerns.

Loss of Appetite and Weight Loss

Loss of appetite and weight loss are of particular concern, as the combination of unintentional weight loss, loss of muscle mass, and loss of appetite are symptoms of a syndrome known as cancer cachexia. Not only can this zap your energy, but it reduces your ability to tolerate cancer treatments and the ability to heal. Eating small, frequent meals, using supplements of protein powder, and choosing high-calorie foods may help you maintain your weight.

Tracheostomy or Stoma Care

For some people with oral cancer, a tracheostomy is performed. If you have this done, a stoma care nurse will work with you to teach you how to manage the stoma and discuss any potential concerns. Often, a tracheostomy can be closed after treatment is completed, though, with some oral cancers, such as those in the voice box, a permanent stoma is needed.

Fatigue

Fatigue is the most common symptom of cancer and cancer treatments, and for many people, is the most frustrating symptom.

Cancer fatigue is unlike ordinary tiredness. It's not a tiredness you can push through or one that abates after a long night of sleep. Many people become frustrated that they are unable to do the things they did prior to cancer, and this frustration is accentuated when family and friends don't understand why you have so little energy. Some tips that have helped people cope with cancer fatigue include:

  • Prioritizing: Choose the activities that you absolutely need to do and do these first. That said, it's much easier to cope with cancer if you take time to do some of the things you enjoyed the most prior to your diagnosis. That might mean taking a leisurely walk and simply leaving the kitchen mess for another day.
  • Delegating: Far too many people try to be heroes and do everything themselves during cancer treatment. This is a set up for exhaustion and more frustration. It can be hard to ask for, and especially receive, help. You may have to go through the motions at first (the fake it till you make it scenario). But in the long run, people often find that learning to receive is one of the best lessons learned from cancer. Not only is this helpful for you, but it can help your loved ones as well. One of the most common complaints from loved ones of those with cancer is the feeling of helplessness. Assigning some tasks for your loved ones to complete can actually help them cope with that very issue.
  • Get a little exercise: It's somewhat counterintuitive, but a moderate amount of exercise can reduce both fatigue and weight loss for those coping with cancer treatment.

Speech Problems

If your cancer involves your tongue, lip, voice box, or if you have a number of teeth removed, talking can be difficult. You may have only mild problems or may need to work with a speech pathologist extensively to regain normal speech. Fortunately, speech therapy can be remarkable in restoring speech. While going through therapy, many people become frustrated trying to communicate their needs to loved ones and taking part in conversations. Having an open conversation about this issue is important.

You may become frustrated that it's hard to express yourself, and your loved ones, especially when tired, may become frustrated that they can't understand you. This combination can lead to conflict and sometimes resentment if not addressed. In situations like this, it's very helpful for both you and your caregiver to become involved in a support community (see below), where both of you can talk with others who have faced similar problems. 

Reconstructive Surgery

Sometimes, treatments for oral cancer require further reconstructive surgery, and this can be very challenging. For many people who are newly diagnosed, there is a sense of "I can do this" early on. The strength you may feel initially, however, may rapidly wane as treatments and reconstructive surgeries seem to go on forever. Sadly, friends who are accustomed to people with other types of cancer may not realize how taxing and lengthy the process is. Again, having honest conversations is important.

Social

About the only thing that doesn't change socially or with relationships with cancer, is change itself. Social connections are extremely important when you are coping with cancer, and with some cancers, a strong social network is actually correlated with survival. At the same time, relationships almost inevitably change after a diagnosis.

Relationship Changes

Many people feel frustrated and even betrayed when close friends seem to disappear after a diagnosis of cancer. If you've experienced this, you aren't alone. It can be very hurtful when those you would have expected to be close and near, are not. This doesn't mean that they are bad people. Instead, some people simply aren't wired to cope well with a friend who is fighting to survive or find it too difficult to cope with the many questions a life-threatening diagnosis brings to mind. At the same time that some friendships fade away, however, you will probably find that you are becoming closer to friends who were once only acquaintances, or even people who you did not know before your diagnosis. As much as it hurts to feel some friends pull away, try to focus on those friends and family members who are showing they will be with you even when it's hard.

Scars and Self Esteem

Friends may pull away, but those who are facing oral cancer may also unconsciously separate themselves due to the scars and bodily insult of cancer. Not only do these scars affect self-esteem, but can lead to people isolating themselves even from friends who are comfortable with the changes. Our appearance affects how we feel more than we realize, and if you have a cancer that results in visible scarring, you may be feeling angry, depressed, and hopeless all wrapped together.

Finding ways to make yourself feel beautiful or handsome despite your scars can be healing, even if you have to force it and fake it a bit at first. If you are healed enough to apply cosmetics to your skin, camouflage makeup can mask many a scar. Finding beautiful scarves and other accessories can also add a special touch while detracting from any visible scars. For women, the program Look Good Feel Better offers free makeovers and makeup instruction for those coping with cancer

The Stigma

There is a stigma that can go with oral cancer much like the stigma those with lung cancer face. In the past, oral cancer was much more common in people who were heavy smokers and drank excess alcohol. But even if you did smoke, nobody deserves cancer. Now that human papillomavirus (HPV) is implicated in many cases of oral cancer, the stigma of having a cancer caused by a sexually transmitted virus can also be heart-wrenching. It's important to keep in mind that a large percent of adults in the United States have been infected with at least one strain of the virus. There is nothing that you should feel ashamed about, and friends should be focusing on how they can support you, not the possible causes of your cancer.

Support Groups and Support Community

As loving and caring as your friends and family may be, there is something special about the opportunity to talk to someone who is facing the same challenges. There are a number of online support groups and communities that you can take part in from the comfort of your home. The Oral Cancer Foundation Support Forum is a group for both patients and caregivers of those facing oral cancer. Inspire and the Head and Neck Cancer Alliance Support Community is another active community of people living with the disease. There are also Facebook groups focused on oral cancer. On Twitter, you can find others who are living with, researching, or treating oral cancer by using the hashtags #oral cancer or #headandneckcancer.

Spending Time With Friends (Apart From Restaurants)

Social support is so important, but unfortunately, a common social past time is getting together with friends and going out to lunch and dinner. As you heal from your treatments you may feel very self-conscious about eating in public. Rather than make excuses about why you don't want to go out with friends, share the truth. Let them know that you'd like to spend time with them, but would prefer that it does not revolve around a meal. Perhaps taking a walk, visiting a botanical garden, or going to a movie would be a better option.

Practical Matters

Unfortunately, most people can't simply put their former life on hold when they are diagnosed with cancer. Insurance issues surface right away when you need treatment. Bills continue to come to your mailbox. And there's your job and children to think about as well. What are some tips for coping?

Career/Employment

If you work outside the home, one of the decisions you will need to make is whether or not you will be able to (or can afford to) take time off. If your insurance is provided through your employer, this can be more frightening. You will also need to face the question about how much you intend to share with your employer and/or co-workers. There is no right answer about how much to share, or when, as what is best depends on many factors.

Before talking to anyone, it's helpful to review your rights as an employee. If you work for a company that has over 50 employees, the company must provide reasonable accommodations. These will be different for everyone but may include the opportunity to work remotely, or to start your day later due to fatigue. For those who are looking for assistance in making employment decisions, or want to further understand the legalities involved, the organization Cancer and Careers is an excellent resource. They provide extensive information, as well as support and advocacy for those trying to balance cancer and a job.

Insurance Issues

Medical insurance has many people with cancer feeling anxious. With the number of different plans available, all of which have varying networks, it's helpful to take a moment and read through your policy carefully. Learn about in-network services before accidentally getting out of network care. If the best physician for your particular cancer is out of network, there are options available. That said, it's important to talk with your insurance company ahead of time. A common discussion among cancer survivors is about the health insurance mistakes they made along the way. Taking even 15 to 20 minutes to review your plan can often reduce the chance that you will have a story of your own to share.

Often times, if a specialist you need is not in-network, you can work with your insurance company so these costs are covered at the same level of in-network providers.

Finances

For a large number of people, finances can be a challenge that adds considerably to the stress of living with cancer. Less time working due to treatment, plus more medical bills, often equals anxiety about making ends meet.

When you are first diagnosed, finances will not (and should not) be your top concern, but taking a few steps can help in the long run. Some people begin a notebook and designate a file in which to keep all cancer-related bills. In addition to keeping track of medical bills, keeping receipts and making a log of all expenses can pay off when it comes to tax time and figuring out your cancer-related tax deductions.

If you're struggling with finances, talk to a social worker at your cancer center. There are a number of options for financial assistance for people with cancer, ranging from prescription assistance to grants to help those with children. If you are still having difficulties making ends meet, an option that has worked well for many people is planning a fundraiser. Whether this means a traditional fundraiser, or an online Go Fund me account, there are often many people willing to help you reduce your financial anxiety so you can focus on healing.

For Family and Friends

Very few people face cancer alone, and the ups and downs and challenges affect family and friends in many ways. The special role that caregivers play has led to the word "co-survivors." We don't need to belabor the important role you are playing for your loved one, but want to stress that you continue to take care of yourself. Burnout is far too common among caregivers, and commonly occurs when you try to be everything your loved one needs. Caring for yourself as a caregiver means eating well and having time for yourself, but also spending time with others so you can be refueled. A 2017 study looking at the unmet needs of caregivers found that the need for relational support is the single greatest need of co-survivors caring for loved ones with oral cancer.

If you have just begun your journey as a caregiver/co-survivor, you may wonder where to start. An excellent resource for caregivers is the practical and down-to-earth book Co-Surviving Cancer: The Guide for Caregivers, Family Members, and Friends of Adults Living With Cancer, by Katie Brown, OPN-CG.

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