Debby Schobel, RN, MN
The length of a cancer survivorship is relative – Type and stage of cancer, aggressiveness of tumor, patient’s age, general health, possible side effects of treatments, genetic predispositions, life situation, care resources available, and luck—-all have a bearing on what makes a long-term survivor. In June 2019, there were 17 million Americans who had been diagnosed with cancer that were still alive: 8 million men/9 million women. 68% of those 17 million survivors had been diagnosed with cancer more than 5 years ago; 18% had been diagnosed with cancer more than 20 years ago. Thanks to the last two generations of cancer research and almost daily advances, the American Cancer Society is projecting 22 million cancer survivors in the US by 2030.
The National Coalition for Cancer Survivorship (NCCS) defines cancer survivorship as starting from the moment of diagnosis and lasting until the time of death (death from any cause). In 1996 the NCCS was established to bring attention to the significant needs of increasing numbers of cancer survivors. The “long-term” qualifier definitely holds a different meaning for different people.
I was originally diagnosed with Non-Hodgkin’s Lymphoma in July 1995 at age 41. At that time the statistics available predicted a maximum 10 year survival. That was 24 years ago and I am still here. It helps to know that survival estimates are based on older data/treatments because they have to wait to know how long any group of patients will live. Long-term cancer survivors have many things in common with shorter-term survivors. However, the gift of time allows some other common characteristics to develop. Long-term cancer survivorship is neither a walk on easy street, nor an endless purgatory. It brings new, different challenges along the way and more often than not, alters the individual’s perception of the world, usually in a positive way. Each journey, like each individual, is different. However, I think there are some commonalities worth discussing.
My personal favorite side effect of living longer as a “cancer survivor” is that you live longer than you would have if cancer had ended your life. Simply put you end up having to deal with a lot of things that you would not have had to deal with if you were no longer here. This has both challenges (stormy weather clouds) and benefits (silver cloud linings). The longer anyone is alive, the more life they experience. Aging does have benefits (being present to experience positive times and opportunities) but it also brings some unwanted life experiences, and having survived cancer does not grant anyone immunity from them. Sometimes it helps to remember that in this case, the challenges of an aging body are a benefit of long term survivorship! Perspective is the key.
Are there problems that are more likely to develop because you have a history of a cancer? Yes, and those are risks that you really need to become educated on, as awareness and preventive actions are priceless. That personal survivorship education is one of the cornerstones of Mission Hope, as with any highly accredited cancer treatment program. Cancer survivors usually develop a new appreciation for health and often seek ways to improve their own, one silver lining of survivorship. This is another area Mission Hope makes a priority. Pick up any of the newsletters and you will find free educational opportunities weekly, addressing diet, stress management, exercise, in all different forms and flavors. Survivors are strongly encouraged to sample the offerings, whenever they are ready, to learn how to live their best life during and after cancer.
Recommended check-ups and screenings need to happen to minimize risks. They almost always bring anxiety; but once done offer a tremendous relief and some reassurance. Survivors are the ideal spokespersons to encourage preventative screenings and healthy behaviors.
New aches/pains/symptoms may easily trigger a panic/fear of re-occurrence or a new cancer in survivors. However, over time, you learn that there is a better way to manage this fear. Specifically, writing down the symptoms with details (what makes it better; what makes it worse) for a week or more. You may even learn it is best to make an apt. with your MD when the symptoms start, as it could easily take a week or two to get in. If the symptoms disappear before the apt. you can cancel it. If the symptoms persist, you will have documented extremely helpful information for your provider making it a productive apt. for both of you. This process provides some feeling of control and improves care.
Silver lining: Making life changes that promote health not only improve the survivor’s cancer course, but decreases development or worsening of other chronic illnesses, improving the quantity and quality of later life.
Long-term cancer survivorship requires an adjustment that most patients and family members do not anticipate, but is extremely important to understand, especially as one finishes initial treatments. Many people assume that having cancer is like living through a short term illness, meaning after treatment you expect your life to return to the same as it was before cancer. [Family members want to expect this as well.] For the vast majority, survivorship does not quite play out so simply. Many factors including the side effects of the cancer, and the treatments, require a long recovery period, and often have impact that changes an individual permanently. Those of us in the business often refer to this as discovering your “new normal.” Just like during most treatment phases, you are likely to have some limitations, especially related to physical and mental fatigue. The interventions encouraged at Mission Hope can help modify this reaction. However, each person learns to live within their new limitations by trial and error. A few times of overdoing it may cost you: Through a loss of active time and normal activities (hitting the wall). Most of us learn to pace ourselves as it allows us to do more, enjoy it more. This silver lining comes, once accepted, in the form of happier, more relaxed days/nights, and might be called: Learning to have realistic expectations of yourself and others.
Living longer as a “cancer survivor” may also bring other life challenges in the form of financial hardships due to inability to continue employment in the same field and the subsequent loss of benefits. Even when we get past the immediate medical and psychological challenges, we usually are required to make some adjustment in life expectations. You and your family may be face challenges that you and they never anticipated: Serious storm clouds. We never expect to get a life-threatening, expensive, or life changing illness—but it happens. That is, of course, where the rubber really meets the road and coping skills are tested like never before. This is another time we see most patients/families develop new, effective abilities to put things into perspective. This silver lining, once attained, ends up benefiting patients for the rest of their life. Requiring a person or family to face a potentially life-limiting event usually results in a ‘life clarity’ that is otherwise hard to come by. Suddenly, life priorities change. What has been #1 in your life may now move to the bottom of your list, and so on. This is especially true once you have completed the initial treatment for your cancer and realize that you might actually get to hang around for a while. You see the world, and more precisely, you see your world differently. While this change in personal priorities and needs may not always be shared by others around you, ultimately, you know that you have to do what rings true to you. This is a time that professional counseling may be greatly beneficial. Yet another resource that Mission Hope can assist with.
Cancer patients rapidly realize that they are mortal and that their time (as with all of us) is limited. Long term survivorship grants you some time to make adjustments or changes that you want or need to make. You may feel as if you have a second chance and do not want to waste that opportunity. This can become a silver lining to those storm clouds. Being able to see what is truly important to you for whatever time you have left in this lifetime, is a gift that can see you through many a future storm. None of us knows what lies around the corner, but whether it is a cancer recurrence, other loss of health, loss of relationships, loss of prior expectations, this skill (hard won) will see you (and your loved ones) through many more unknowns.
Another change we see in the majority of our long-term cancer survivors is a renewed, appreciation for life as a human being on this planet. Suddenly, little things taken for granted become treasures. As noted above, the world often looks different to you. This shows up in little ways and is different for each of us. It may be appreciating how good it feels to have a hot shower, your favorite home-cooked meal, your flowers blooming, or the smell of rain after a drought. Or it may be as big as waking up in the morning, with another day in front of you. We often see this silver lining develop as a new found gratitude and thankfulness for what we still have and still can enjoy. In the past 10 years numerous studies have found measurable health benefits and stress management secondary to the daily practice of the expression of gratitude.
One of the silver linings we see most patients/families develop after surviving cancer is that they realize the immense importance of self-advocacy in seeking all types of healthcare. This is often a very personal change that is difficult for certain age groups, and cultures, where it may not be considered proper to complain about symptoms, life circumstances, quality of healthcare, or to ever “question” professionals. We strongly emphasize that although you may be surrounded with caring professionals, no one will ever know what you are experiencing unless you make the right people aware of what is happening in your life. Fortunately, for most of us in this country, resources exist to help you in times of need. Cancer survivors become intimately aware of this and realize their lives (and the lives of those they care about) may depend on understanding this. They become, with help, more adept at navigating the healthcare systems, and connecting with what they need. No one can be more interested in your long-term welfare than you.
Other than making improvements in your lifestyle, and taking preventative screenings seriously, there are a few things I have learned that have probably contributed to my survival. Some of these habits are hard to learn/do consistently but the benefits may be immeasurable to you. Mission Hope offers programs that may assist you in getting to this place. It does not happen overnight and like any good habit, you usually must continually work at it.
Recommendations for a Better Cancer Survivorship
1. Learn to differentiate between what YOU can actually impact vs. what YOU cannot impact, at any particular point in time. (These items may change with time). Focus on what you can impact and spend your energy and resources there. This can be an enormous stress reducer and can result in living better and longer.
2. Try new things to expand your relaxation and coping skills. Set new goals and never stop dreaming or hoping for a good day. If you do not try, you will never get there.
3. Feed your soul. This means different things to everyone, and only you can figure out what that means for you. It is whatever brings you a sense of peace, serenity and often joy. I often describe it as something you enjoy so much that time seems to stop when you are doing it and you lose yourself in the activity. DO MORE OF IT!
4. If able, return the favor by sharing what you have learned. One in three Americans develops cancer during their lifetime. You very likely know many survivors, whether they choose to share their situation or not. Your survival offers them:
Hope of a future
Hope of more “life”
Hope that new achievements/goals are still reachable
Remember, as long as you stay in the game, you remain in the game!
Questions about our Survivorship Program?
Need a Survivorship Care Plan? Want to attend some of our support or exercise groups ? Call Sean Hunt, RN, BSN, OCN, Oncology Nurse Navigator Santa Maria at 805-346-3401 or or Carol Dichmann, RN, BSN, Oncology Nurse Navigator Arroyo Grande 805-474-5302