Category Archives: Survivorship

Remembering Ellen Stovall, Cancer Survivor Advocate

By Otis W. Brawley, MD, FACP

Ellen Stovall, a long-time cancer survivor advocate, died of heart failure last week.  She was 69 years old.  As is the case these days, word of her death spread through email.  We at the American Cancer Society were saddened to hear of her death, but for me and for many others this one was extremely personal.

I first met Ellen more than 25 years ago when I was a young oncologist at the National Cancer Institute. She would become a good friend.  Over the years, she would encourage me.  She often gave me emotional and intellectual support especially when I took unpopular stances on issues.

Shortly after I first met Ellen she founded the National Coalition for Cancer Survivorship.  She and some other courageous survivors would demand that consumers be included in medical and scientific research decision-making and they would get a seat at the table.

In a world where people come and go, Ellen stayed pertinent for more than 25 years.  Ellen was disruptive.  She was quiet and polite, but effective. She was not a politician, but she was the consummate insider.

Ellen would eventually define and get us all to accept that a person is a cancer survivor as soon as they are diagnosed with cancer.… Continue reading →

Palliative care is part of good cancer care

By Diane E. Meier, M.D., FACP

Deborah, a 36-year-old mother of two young children, was diagnosed with breast cancer 2 years ago, and the disease has metastasized (spread) to her bones. The pain is severe, making it hard to care for her children or get to work.

Like any young mother, Deborah is determined to fight her cancer and be present for her son and daughter as they grow up. Deborah’s oncologists, doctors at the top of their field, are intensely focused on controlling her cancer and identifying the chemotherapy plans that are most likely to work for her. But they have been unable to manage Deborah’s pain. It had become so bad that she was unable to sleep or eat, spending much of the day curled on her side in bed. She missed a course of chemotherapy because of her pain, and she had to hire outside help to get her kids to and from school.

Deborah’s long-time internist finally referred her to the palliative care team at her local hospital. They prescribed a low-dose opioid medicine and within 2 days, Deborah’s pain was well controlled, she was up and around, sleeping and eating, and back to normal life with her family.… Continue reading →

Chemo 101: What you need to know

By Agnes Beasley, MSN, RN, OCN

“What should I expect from chemotherapy?” 

I’ve heard those very words spoken by newly diagnosed cancer patients on many occasions in my extensive oncology nursing career. It’s normal for a newly diagnosed patient to try to make sense of what is happening to them. Questions swirl like a tornado in a cancer patient’s mind. You may feel that way right now. Some of the questions you may have are:

  • What can I expect on the day of chemotherapy (chemo)?
  • What can I expect when I go home after chemo?
  • What happens in the “chemo room?”
  • How long will it take to get my chemo?
  • Can I have someone with me during chemo to keep me company?
  • What am I allowed to bring with me to keep me busy?
  • Is it okay to sleep?
  • Will there be other people getting treatment around me or can I be in a private room?
  • I’m feeling anxious, overwhelmed, upset, and angry. Is what I’m feeling normal?
  • If I have questions, who do I call for the answers? [more]

Oncology nurses in the chemotherapy suite get these types of questions on a daily basis. You may be thinking we’re too busy to answer your questions, but don’t worry, ask.… Continue reading →

Continuing to smoke after a cancer diagnosis

By J. Lee Westmaas, PhD

While the American Cancer Society and other organizations traditionally focus on getting smokers to quit before they develop cancer, there’s a group of smokers who are especially susceptible to the negative effects of smoking. They are cancer survivors – some of whom have been diagnosed with a smoking-related cancer. It’s easy to say, “If you get cancer, then you should know better and quit, and stay quit,” but that’s not the whole story.

Getting a cancer diagnosis does motivate some smokers to quit. Using data from the American Cancer Society Cancer Prevention Study-II, we found that about 1 out of 3 smokers quit smoking when they were diagnosed with cancer. That compares with only 1 out of 5 smokers who quit but were not diagnosed with cancer during the same time periods studied.

Even smokers whose cancer was not strongly linked to smoking (like breast cancer) quit at higher rates than undiagnosed smokers. These results were not caused by the smokers being unable to smoke due to their illness; those people were excluded from the study.

Smoking: Risky for patients and survivors

Quitting is particularly important for cancer patients and survivors because smoking can increase the likelihood of a recurrence, delay wound healing, and make cancer treatments less effective.… Continue reading →

Tips for your first oncologist’s appointment

By Francisca Alvarado, BSN, RN, OCN

The cancer journey brings about many overwhelming feelings. Many thoughts may go through your mind when you hear, “You have cancer and you need to be seen by an oncologist.” You may wonder how this will impact you, your family, and your friends. The possible anxiety caused by wondering what the oncologist will tell you at the appointment and which decisions you will have to make may take over your thinking. You may have trouble listening, understanding, or remembering what anyone is telling you during this time due to the very normal distress, uncertainty, fear, and anger you may be feeling.

Having a better understanding of what to expect, what to take with you, and which questions to ask at your first oncologist’s appointment may help you better prepare and lessen the anxiety. 

Get the logistics clear

Before your first appointment, make sure you know the answers to these questions. Although they seem obvious, it can be easy to overlook these details when you’re worried about your diagnosis:

  • What is the full name of the oncologist I will be seeing?
  • Does the oncologist take my insurance? What will I be expected to pay on the first visit?
Continue reading →

Adults Need Vaccines, Too

By William Schaffner, MD

As I like to tell my patients, the best approach to everyday health is a proactive one, and that means staying up-to-date on recommended vaccinations in addition to annual checkups.

Many adults don’t visit a doctor unless they feel ill, nor do they think about vaccination as part of their routine, preventive healthcare. This leaves them needlessly vulnerable to diseases that can cause severe health complications or even death. 

Vaccines are a safe, effective way to help prevent a number of diseases at any age-from 6 months to 60 years, and beyond. In fact, there are several vaccines recommended specifically for adults because of their risk for certain infections.

It’s important for all adults to check with a healthcare professional about which vaccines are recommended for them, as we all need some vaccinations as we age. For example, the chance of having complications from the flu, or getting shingles or pneumococcal disease (see below for more information) increases with age. In other cases, a weakened immune system or the presence of underlying illnesses like cancer, heart disease, or diabetes can make us more susceptible to diseases.

Many adult vaccines are readily available at primary care medical offices and in pharmacies, and the cost of vaccination is usually covered by Medicare and most private insurers.… Continue reading →

After Prostate Cancer Treatment Ends

By Rebecca Cowens-Alvarado, MPH

According to the American Cancer Society, there are nearly 3 million prostate cancer survivors in the United States today and this number is expected to increase to almost 4.2 million by 2024.  Most prostate cancers (93%) are diagnosed at the local or regional stage, before the cancer has spread to surrounding organs. Treatment at these early stages is often very successful, and the 5-year relative survival rate approaches 100%.

Treatments for prostate cancer patients vary based on age and stage of diagnosis, but the majority of prostate cancer patients younger than aged 65 are more likely to be treated with radiation, radical prostatectomy, or a combination of both. Some patients may also be treated with androgen deprivation therapy (ADT), while others may simply undergo active surveillance, or “watchful waiting,” to see how the prostate cancer progresses before choosing a treatment option. While the survival rate for prostate cancer is high, being diagnosed and treated for prostate cancer may cause a number of physical, psychological, and social side effects that can last (or develop) long after treatment ends.

Common issues faced by prostate cancer survivors who underwent surgery or radiation include: difficulty having an erection and decreased interest in sex, which may impact sexual intimacy; needing to urinate quickly or not being able to control when they urinate; bowel problems such as not being able to control or having diarrhea; and distress or depression.… Continue reading →

How electronic health records can help on your cancer journey

By Simone Myrie

Ed. note: This guest post by Simone Myrie of the Office of Consumer eHealth, Office of the National Coordinator (ONC) for Health Information technology, US Department of Health and Human Services. In it, she explains how electronic health records and Blue Button can help cancer patients, survivors, and caregivers as they navigate their cancer journey.

No two experiences with cancer are alike, but there are certain things that almost all cancer patients and their loved ones share in common. From getting a diagnosis, to coordinating care among doctors and at home, and on to long-term survivorship plans, the cancer experience is one centered around information. Some of the information we seek is mostly objective: What can I expect this disease to do? What are my treatment options? How can I improve my odds of beating cancer?

But some of the most important information you can gather, keep track of and share is information unique to you: Your own health records. The visit summaries, clinical notes, test results, medication lists, treatment histories, and other documents represent a critical picture of your individual cancer experience. This information has implications for your individual choices, your professional care, and the care you receive from loved ones.… Continue reading →

Cancer Survivors: Make Changes for Long-term Health Gains

By Corinne Leach, MPH, MS, PhD

If you are a cancer survivor, whether you’re currently in treatment or completed treatment long ago, you are far from alone. The estimated number of cancer survivors in the United States is currently 13.7 million and will continue to grow as our population gets older. By 2022, we expect there to be 18 million cancer survivors.

Cancer researchers are working hard to find cancers earlier, improve treatment, and decrease the negative side effects commonly associated with treatment, like fatigue, pain, lymphedema, and chemo brain. Many people come into the cancer experience with other chronic health conditions (e.g., diabetes, hypertension, arthritis), and many more develop additional conditions after their cancer treatment ends.

An important question is:  what can I do to stay as healthy as possible and feel as good as I can after cancer? The good news is that making changes in your lifestyle can make a difference in your long-term health. Here at the American Cancer Society we recently developed physical activity and healthy eating recommendations specifically for cancer survivors. But what do they mean for you? [more]

If you smoke, quit

Smoking causes many health issues for people who have not had cancer.… Continue reading →

Holiday Eating Tips If You’re in Cancer Treatment

By Michele Szafranski, MS, RD, CSO, LDN

 

We all have wonderful food memories associated with the holidays. Maybe it is a favorite dish made by a loved one or a special memory of decorating cookies with your grandchildren. But during cancer treatment, visions of sugar plums may bring anxiety. When you are having trouble eating or keeping food down, the thought of holiday gatherings and meals can fill you with dread. There are a few things to keep in mind that might be help you get through these occasions with reduced stress.

Celebrating doesn’t have to be stressful

What can you do to make a holiday gathering less stressful? First, don’t be afraid to tell people you aren’t up to your usual celebration. Delegate if you are hosting the party. People always want to know what they can do, so give them specific dishes or tasks to take some of the pressure off.  If you have a dish you are known for, focus your energy on that one dish and let others take care of the rest. If you aren’t up to cooking, pass the beloved recipe to a friend or loved one for them to try.  Offer to bring drinks, paper goods, or the centerpiece for the holiday table.… Continue reading →