How to thrive in cancer survivorship

June 7, 2018 Providence Health Team

Survivorship begins the day you’re diagnosed.

Being engaged and empowered in your cancer treatment is vital.

Helpful resources are out there—you just have to ask.

When it comes to cancer, survivorship doesn’t start when your treatment ends and you’re declared cancer free. Just ask Dianne Danowski-Smith.

The marketing consultant had been diagnosed with colorectal cancer on Halloween of 2013, and two years later a small tumor was found in her right lung, which meant her cancer had metastasized. She was declared cancer free in late 2015, and in 2016, she keynoted as speaker at National Cancer Survivors Day. Like all attendees at the event, she was a given a button that read, “I am a survivor since ____,” and a Sharpie to write in a date. She put June 2015, when she underwent surgery to remove the mass in her lung.

“When I got up to speak, a group of women walked into the back and became very vocal and engaged in my story,” Danowski-Smith says. “One of the women said, ‘Tell us more,’ like she was really encouraging me, and that made me smile. Afterwards, I went up to the woman who had been the most vocal and introduced myself and thanked her for being encouraging. I noticed her button said October 31, 2013 on it and I said, ‘That was the day I was diagnosed!’ She said, ‘So was I.’ I learned a huge lesson that day: I realized survivorship doesn’t start the moment you’re declared cancer free, it’s the day you first hear the news of your diagnosis.”

You are your own best advocate

For Danowski-Smith, survivorship is also defined by how engaged and empowered you are in your cancer journey.

“We know ultimately that people who are more empowered in their care statistically have better outcomes. That is the secret sauce of cancer survival,” she says.

Danowski-Smith was no stranger to taking initiative during cancer treatment. In the mid-1990s she worked on a public relations awareness campaign about colorectal cancer, which is why she went to her primary care doctor when she saw a tiny spot of blood in her toilet bowl — she knew it was a warning sign for the disease. Still, the then 47-year old was surprised when she was diagnosed with stage 3 cancer. She was a runner who strived to lead a healthy life. She had no family history or risk factors for the disease, which is typically associated with advanced age but is increasing among young adults. Colorectal cancer screening tests don’t even begin until age 50 for most people. Even early on, she knew the importance of being actively involved in mapping out her survivorship and treatment plan.

“If you or someone you know is diagnosed with any type of cancer, get connected with a really good oncologist,” she says. “It can be common to first be referred to a surgeon, and surgery may then lead to different kinds of treatments such as chemotherapy and radiation. But the first place to start before you do anything is meet with your oncologist. The oncologist is the hub of your wheel in terms of your cancer treatment. Also, your oncologist will help you develop all the wraparound care you are going to need, such as palliative care. That’s important, whether it’s good tips on nutrition, the right kind of exercise, the appropriate amount of sleep or dealing with pain. Your oncologist can ensure you get all the help you need as you’re enduring cancer treatment.”

Working with your oncologist, you can understand how your treatment will progress. For Danowski-Smith, it was a grueling journey. She began treatment in mid-December 2013, starting with 24/7 chemotherapy and daily radiation simultaneously for six weeks. The following March, a tumor was removed from her rectum during an extensive surgery, and she had a temporary ileostomy.  After some time off to let her white blood cells and immune system regroup, she underwent a second course of treatment that lasted for eight weeks and left her with some temporary neuropathy, mouth sores, fatigue and loss of appetite. In mid-August 2014, the ostomy was removed, but that reconnection of her digestive system didn’t work as hoped, leaving her with pain and longer-term postoperative effects. In April 2015, she went in for a routine CT scan and found the cancer had metastasized to her right lung. After surgery, she decided to do whatever she could to fight cancer, so she went through about four rounds of chemo before becoming too sick from it. Her third course of chemo ended treatment in September, 2015.

Danowski-Smith says she had the benefit of a fantastic oncologist and care team, but she also learned that when it comes to survivorship, “You are the most important part of your cancer care team. Sometimes you have to ask a lot of questions and do a lot of research because the first two or three things didn’t work. Sometimes you’re not even a warrior but just a plodder — you work and do what you can to feel better and be better. I realized there were things I was going though that I needed to do more research on my own to manage my palliative care. You may have to ask for some of these things. Your oncologist won’t know you need help unless you ask for it.”

Watch our Living Well Beyond Cancer Treatment videos featuring patients who share their stories and practical advice on how to cope from an oncology specialist.

Finding a new normal

One of the things Danowski-Smith realized she needed help with was figuring out what life after cancer would look like.

“I didn’t want to be defined by cancer. Cancer was a part of my life, but I didn’t want it to be my whole life. Ultimately, I wanted to be a true survivor, and one big area of survivorship for me was figuring out what my new normal was going to be. I’m not the same person I was — I’m a different person with a different outlook and considerations and thoughts and life goals. Once you have cancer, you never stop thinking about your cancer. But I also wanted to go back to being the professional, friend and family member that I was.”

For Danowski-Smith, that meant regaining her love of running. She completed her first post-cancer race last year. The self-described type A personality also says she promised her husband she wouldn’t constantly be on the go all the time, a promise that has been easier to keep because she finds her energy level is a little less than it used to be. “I’m still pretty active, but I sometimes have to lay low and not overschedule myself,” she says. “Part of that new normal is adjusting to know what I’m capable of. Because I’ve had post-op pain that still lingers with me, I’ve found ways to mediate the pain, but I still have episodes two to three times a month where I literally have to stop what I’m doing and get off the merry go round. I’ve found some ways to cope with it that don’t involve heavy medications, such as yoga.”

The other thing survivorship has taught her — which has become a large part of her new normal — is an increased compassion for people going through cancer, chronic diseases or long-term pain. “I have an understanding, appreciation and magnified empathy for them. I feel it in my soul,” she says. “Survivorship to me means much more than it did before I got my cancer. It’s a broad term not only for people with cancer but for people who have gone through things in their lifetime and developed strong, proactive and positive coping strategies, what I call ‘mediation strategies’.”

This strong, compassionate connection led her to establish Answer2Cancer, a nonprofit Danowski-Smith works on in her free time. It’s built on a three-pronged premise: helping patients become more educated about their care; giving them access to high-quality, reliable information; and guiding them to community resources that support not just the patient but the caregiver and family members as well. “My hope is to work myself out of a job, that no cancer patient ever feels alone,” she says.  

Answer2Cancer sponsors a daylong event focused on survivorship, advocacy around current developments in oncology treatments and how to be the best patient possible. There are also plenty of opportunities to support cancer patients so they don’t feel scared and adrift. At the first event in 2016, a young, stressed-looking woman came in and sat down at a table with another woman she didn’t know. She was obviously burdened, but she didn’t seem to want to talk with the others at her table.

“At lunch, the younger woman finally introduced herself and said, ‘I guess I’m here because I’m in a bad situation. I’ve been diagnosed with advanced cancer and I’m all alone and I don’t know what I’m going to do.’ An older woman at the table put her hand on the young woman’s hand and said, ‘I lost my husband two years ago to cancer and I came today because I felt there was someone I was supposed to help. I will help you, I will go to your appointments with you and I will be there with you and for you.’ We are in the midst of an incredible empowerment revolution. People who go through this want to help other people going through this. That is the power of engagement and sharing your story. That is the power of having cancer in this day and age because help and hope are abundantly available."

For almost a year and a half, Danowski-Smith has also been involved with Providence Cancer Institute’s Patient and Family Advisory Council. She underwent her lung surgery at Providence Portland Medical Center and finds the opportunity to serve on the council an invaluable way to provide health care professionals with the patient’s perspective in order to best support those with cancer and get information to them during their journey. It’s all part of ensuring they thrive as well as survive.

“Ultimately, survivorship means being proactive in your own care, asking questions and discovering,” she says. “Providence has a wonderful patient library and a wonderful social worker team that stands ready to help people. You just have to be willing to ask the questions. Ask your oncologist what support and service is available. It all exists and is out there.”

“Getting engaged and empowered in your care will matter the world to you. So many people have gone through cancer treatment and so many want to help and stand ready. They could be people you are related to, people on a clinical care team or people in a patient advocacy organization in the community. The resources are unbelievable — you only have to tap into them to get help, support and encouragement along your journey."

Have you or a loved one been diagnosed with cancer and need help getting answers to your questions? Find a health care provider near you.

AK: Providence Cancer Center

OR: Providence Cancer Institute

CA: Roy and Patricia Disney Family Cancer Center; John Wayne Cancer Institute

WA: Providence Regional Cancer System; Swedish Cancer Institute; Kadlec Oncology Program; Pacific Medical Centers; Providence Regional Cancer Center

MT: Montana Cancer Center at Providence St. Patrick Hospital and Providence St. Joseph Medical Center

 

This information is not intended as a substitute for professional medical care. Always follow your health care professional's instructions.

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