On Cancer Survivors Day, June 7, many thousands pause to honor and celebrate cancer survivorship, share their stories of hope and of how rewarding, productive, and inspiring life after a cancer diagnosis can be.
It is also a day for outreach, education, and support; a celebration including cancer survivors, family members, friends, and medical professionals.
There are some types of cancer, such as cervical cancer and skin cancer which have very high cure rates if found early, and importantly, their treatments may not have lasting effects.
There are other types of cancer that are treated much more aggressively and those treatments can have long term effects which influence how people view their survivorship. I should say that some people who have, or have had, cancer prefer not to use the word “survivor.” Some are “living with cancer” and know that their cancer will not be cured but will require lifelong treatment. There is also the idea that the word itself implies some level of bravery, that they “fought” their cancer and won. Unfortunately, this also implies that people who do not survive their cancer did not try hard enough. This, of course, is untrue and hurtful.
The legacy of cancer is unique to each person. Many describe it as a life-changing, almost spiritual journey that altered their thinking and ways of being forever.
Who is a Cancer Survivor?
There are more than 16.9 million cancer survivors in the US and different ways to describe the label.
According to Mary Reid, MSPH, PhD, Director of Cancer Screening and Survivorship at Roswell Park Cancer Center in NY, “both the National Cancer Institute (NCI) and Roswell Park clinically define a person as a cancer survivor from the day of their cancer diagnosis onward, for as long as they are alive.”
Cancer.net describes 3 phases of survivorship:
- Acute survivorship starts at diagnosis and goes through to the end of initial treatment. Cancer treatment is the focus.
- Extended survivorship starts at the end of initial treatment and goes through the months after. The effects of cancer and treatment are the focus.
- Permanent survivorship is when years have passed since cancer treatment ended. There is less of a chance that the cancer may come back. Long-term effects of cancer and treatment are the focus.
Is It Remission or Cancer-Free?
Understanding the Difference Between Cure and Remission from the National Cancer Institute
- Cure means that there are no traces of your cancer after treatment and the cancer will never come back.
- Remission means that the signs and symptoms of your cancer are reduced. Remission can be partial or complete. In a complete remission, all signs and symptoms of cancer have disappeared.
- If you remain in complete remission for 5 years or more, your oncologist may say that you are cured, as most cancers that return do so within the first 5 years after treatment. Cured is a word physicians are wary of–they may say that there are no signs of cancer at this time also called “no evidence of disease” (NED). Monitoring and regular scans and tests keep an eye out for a return.
Here’s is some advice from MD Anderson Cancer Center for newly diagnosed cancer patients.
- Don’t dwell on statistics. This is your experience, and no two people, cancer diagnoses, or experiences are exactly alike.
- Knowledge is power. Research your disease and treatment options. Ask questions. Take notes when you meet with your doctor. This will help you feel more at peace with your decisions.
- Be your own advocate. You know your body and your wishes for treatment better than anyone else, so speak up if something doesn’t seem right.
- Don’t rush into treatment. Where you go first for treatment matters. The decisions you make now can affect your treatment options and prognosis down the road. So, take the time to choose a cancer center, and evaluate your treatment options. Get a second opinion if you’re not happy with the options you’re given.
- Cancer is beatable. Thanks to clinical trials and new treatment options, more people are beating cancer and living longer than ever before.
- Take life one day at a time. A cancer diagnosis is easier to face if you focus on one day and one appointment at a time.
- Find at least one positive thing every day. Your favorite show or meal, a funny text, the sound of birds chirping – look for something that’s good in spite of your diagnosis. And don’t forget to laugh.
- Take someone with you to appointments. Your care team will share a lot of information with you, and it can be hard to remember it all. Bring a loved one along to hold your hand, ask questions, and take notes.
- Don’t ignore your emotions. Cry, scream, curse, and laugh when you need to. These emotions are normal. Seek professional help to deal with your emotions and stress if you need it. Ask your doctors and nurses for referrals to social workers, counselors, and other therapists.
- You don’t have to face cancer alone. Connect with other cancer patients and caregivers. Your oncologist will have a list of both in-person and on-line support groups.
- Maintain as much of your routine and life as possible. Yes, things will change, and you may not be able to do some things you’ve always done. But when you can, live your life and retain some sense of normalcy. This will help take your mind off cancer.
- Eat well and exercise when you can. Be good to your body, so it can help you get through treatment.
- Start a Facebook page or CarePages site to share your journey with your friends and family. This helps when you’re tired of saying the same thing over and over, and it can help you stay connected to friends and family who are far away.
- Ask for help. Your friends, family, and colleagues really do want to help, but they might not always know what you need.
- Be patient with yourself — and with your loved ones. Cancer is hard on everyone, and some things will change. Adapting to change and healing takes time. That’s OK. As I learned from Dr. Paul Kalanithi’s book When Breath Becomes Air you may be diagnosed with cancer, but you are alive right now.