5 Tips for Coping With a Rare Cancer

by Hannah Bessinger

Anyone who has been diagnosed with cancer understands the sinking feeling and paralyzing fear that quickly sets in. Your mind races through treatment options and side effects, and you become fixated on how you and your family are going to cope with the uncertainty to come.

Rare Cancers

For people who have been diagnosed with rare cancers, that fear and uncertainty can become compounded by feelings of isolation. Patients with rare types of cancer often find it difficult to get information, locate a specialist, and connect with others who are going through the same thing. They may have to travel quite a distance to a qualified treatment center, leaving behind their support network of family and friends.

If you or a loved one has been diagnosed with a rare cancer, you should know that you are not alone.

What Is a Rare Cancer?

There is no globally agreed-upon definition for a rare cancer. However, the National Cancer Institute considers a cancer rare if there are fewer than 15 cases per 100,000 people annually. (Compare this to 123 cases per 100,000 people annually for the most common types of cancer, breast cancer in women and prostate cancer in men, according to the American Cancer Society.) 

Rare cancers are not necessarily obscure diseases that patients have never heard of, for example, breast cancer in men, non-Hodgkin lymphoma in children, and mesothelioma. However, when patients receive such a diagnosis, the shock of finding out they are part of such a small group can be particularly distressing.

It’s Time to Take Action

No person’s journey with cancer is easy. But those who are diagnosed with rare cancers shouldn’t feel like they are on this journey alone. Here are several actions you can take to fight off feelings of isolation and uncertainty:

- Arm yourself with information. Although you can’t trust everything you read on the Internet, this mode of information-gathering provides cancer patients with a powerful tool for understanding their rare disease. Start with the basics, such as information from the National Institutes of Health Rare Cancers database. Look for new research and studies on the disease, promising clinical trials, and foundations or support groups specific to your type of cancer. Blogs can also be a great source of personalized information that can help you understand what others in the same situation are doing to combat their illness and stay emotionally healthy.

- Be open with your doctors about your emotional health. Your healthcare team is there to support you, and they understand that cancer doesn’t just affect your physical health. Your doctor may be able to give you helpful tips for fighting off depression or feelings of loneliness, or he or she may refer you to a counselor who can help you process your feelings. 

- Seek out support. You may not know of anyone who has gone through what you are going through, but support is out there. Look for organizations that offer online support groups or discussion forums where you can talk to others who can truly relate to your journey. And don’t feel limited by your type of cancer. If there is a local support group where you can meet other patients with other types of cancers in person, try it out. Most importantly, don’t hesitate to lean on family and friends. They may not understand what you’re going through, but they can still support you through it.

- Write down your feelings. Sometimes when you feel like you have no one to talk to, it can help to write down your feelings in a journal or, if you want to share, in a blog. Documenting your journey like this can also help you look back and realize that you have had good days along with the bad.

- Take it one step at a time. Especially with the extra challenges that patients with rare cancers face, life can get overwhelming. Try to tackle each challenge as it comes, rather than get wrapped up in what lies ahead. And don’t be afraid to ask for help when you need it.
Although rare cancers may get less attention, people with rare cancers should not. No matter what type of cancer you have been diagnosed with, the fact is that we are all in this together. You are not alone. If you have been diagnosed with a rare cancer, please share your story in the comments. The more we talk about these less common cancers, the more awareness, and support we can create.

Are you fighting a rare cancer? What type is it, and how are you doing with it? Please comment below, your answers will help others know that they are not alone. 

Our Guest Blog Post today is from Hannah Bessinger, she is a writer based in Raleigh, NC. She earned an MFA in writing from North Carolina State University, and she continues to be obsessed with the power of story in everyday life. She enjoys writing about all things health and fitness related and is an advocate for stopping the stigma that surrounds mental illness. In her free time, she loves to hike, read, and play with her pet parrot.

You can connect with her on Twitter @hannahbessinger

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