The Day After....Cancer Survivorship

Contributor: Z. Colette Edwards, WG’84, MD’85
To learn more about Colette, click here.

What do I do now?
One of my coaching clients came to me for help with taking the leap into retirement. He wanted to move on to the next phase of his life but felt paralyzed….. “When I think about packing up my office and the going away party, I say to myself ‘What do I do the day after?’” After so many years of being in the same routine and feeling at the top of his game, he literally could not imagine what it would be like for things to be different when he thought about the future. He put in the work required for coaching to be beneficial and ended up actually retiring much earlier than he planned.

In a somewhat analogous way, those who survive both cancer and the treatment which led to a cure or remission can find themselves in a “day after” state of mind. After living through a time focused on saving one’s life and being in a routine of doctor’s visits, blood work, radiologic imaging, surgery – chemo – radiation - hormones (or all four treatment modalities) and the potential side effects thereof, cancer survivors can experience a “What do I do now?” moment.

You Are Not the Only One.
As of January 2019, there were an estimated 16.9 million cancer survivors in the U.S., 18% of whom have survived 20 years or more. That’s more people than the state of Pennsylvania. And with advances in science and medicine, the overall 5-year survival rate for childhood cancers is now in the 80 – 90% range. Creating a cancer survivorship experience is essential not only for cancer survivors but also the family members, friends, and colleagues who are also impacted by having someone close to them on the other side of treatment. Those who are caregivers of someone with cancer number up to 6 million people in the U.S.

Shifting focus to living instead of not dying may be more difficult than anticipated. And then there is also the question of what steps need to be mapped to design a care pathway to ensure optimization of both physical and emotional health and well-being and the type of follow-up needed to be proactive about potential complications of treatment and early warning signs of relapse or recurrence. And although treatment can be life-saving, one “side effect” includes the financial implications of the cancer journey. 42% of patients with a cancer diagnosis age 50 or older deplete their life savings 2 years out from diagnosis. Cancer patients are 2.5 times more likely to declare bankruptcy, and those who declare bankruptcy are 80% more likely to die from cancer than other cancer patients.

Unmet Patient Needs
A 2019 National Coalition for Cancer Survivorship survey of 1380 adult cancer patients, of which 688 had completed treatment indicated:

Fatigue and anxiety were noted to be the most common and severe long-term effects.
Healthcare professionals were perceived to be far less helpful in supporting patients relative to depression, anxiety, fatigue, and issues with cognition than with in-treatment side effects like nausea and vomiting.
Few felt prepared or informed regarding life post-treatment.
They reported less than 50% of providers initiated discussion regarding survivorship planning.
Top issues of concern were:
- finances
- insurance coverage
- having the energy to make it through the day
- feelings of uncertainty regarding the future
- managing long-term side effects

A survey of 91 physicians conducted by the Feinberg School of Medicine at Northwestern University found that, although cancer survivors may be at higher risk for a chronic condition such as cardiovascular disease, less than 30% of oncologists discussed the need to adopt a healthy lifestyle and take preventive actions.

Potential Side Effects and Complications of Treatment
The potential complications of cancer treatment are myriad and can be numerous. They can appear in cancer survivors many years after treatment and may also exist long-term. The type of complications vary by the type of cancer, the type of treatment, and the specific regimens which were used. And some cancer treatments can lead to the development of a different type of cancer than the original.

Complications of chemotherapy can include:

early menopause
infertility
hearing loss
oral health issues – dental problems, loss of taste
heart problems, including congestive heart failure and irregular heart rhythm
high blood pressure
hearing loss
osteoporosis
lung disease, including reduced lung capacity
nerve damage, including the numbness and tingling of neuropathy
issues with memory, focus, and concentration
joint and bone pain
fatigue
skin and eye sensitivity to light
secondary cancers, including acute leukemia or myelodysplasia

Complications of radiation can include (usually related to the specific part of the body that received the radiation):

early menopause
infertility
lymphedema (swelling of a limb due to disruption of the lymph system)
thyroid disease, including hypothyroidism
heart and vascular problems, including increased risk of stroke and coronary heart disease
oral health issues – tooth decay, cavities, dry mouth
problems with the GI tract, including colitis (inflammation of the lining of the GI tract), diarrhea, and obstruction
osteoporosis
issues with memory, focus, and concentration
lung disease
blood and clots in the urine due to inflammation of the bladder
fatigue
cataracts
hair loss
learning disabilities in children
slowed or halted bone growth in children leading to short stature
secondary cancers, including acute leukemia or myelodysplasia

Complications of surgery can include:

lymphedema (swelling of a limb due to removal of lymph nodes)
adhesions, which can lead to bowel obstruction and other complications
changes in the look and feel of the breast for those who undergo lumpectomy or reconstruction
scarring at the surgical site

Complications of hormone therapy can include:

early menopause
osteoporosis
blood clots
sexual dysfunction and loss of libido
hot flashes
gynecomastia
cataracts

The range of impacts on emotional and mental health runs the gamut and can include:

depression
anxiety | emotional distress
unexpectedly feeling blue
fear of recurrence
anger
feelings of isolation
negative feelings of body image
feelings of insecurity | uncertainty
PTSD

Creating a Survivorship Plan
A survivorship plan will vary from person to person and should be customized to meet the unique needs of each patient. The list below includes some factors to be taken into account when designing a survivorship plan but is not meant to be exhaustive:

type and stage of cancer
type of treatment – surgery | chemo | radiation therapy I hormonal therapy | immunotherapy
any side effects and/or complications suffered during therapy or residual issues present when treatment ends
an end of treatment summary
follow up care plan to monitor for signs of complications, recurrence, or going out of remission
preventive care plan:
- healthy lifestyle – healthy eating, physical activity, sleep
- immunizations
- cancer screenings
- oral health
- eye health
- emotional and mental health
- social connection, including support groups if they are a fit for you
guidance for managing physical side effects
information regarding local resources and support groups
ways to address financial needs and financial toxicity
coping after a natural disaster

There are many survivorship plan templates available. See the Resources section to find one that may work for you. And remember the importance of self-advocacy does not change just because treatment is behind you.

Living, Not Just Not Dying
Now that treatment is behind you and many people expect it to be a joyful time, transitioning from treatment to a state of cancer survivorship can bring its own challenges as well as mixed emotions. And it is not uncommon to go into “care withdrawal.” Some feel adrift, uncertain, anxious, and afraid. You’ve faced your own mortality, and your perspective on life may have changed. Things that were stressful in the past may no longer seem important. You may feel strong and empowered one day and overwhelmed the next.

The journey is different for each person and can be impacted by the life you lived prior to diagnosis, your support system, whether or not you suffer side effects or complications, the dynamics between family, friends, and colleagues, as well as the future you envision for yourself. It is common to experience a fear of recurrence, anxiety prior to doctor’s appointments and testing, and uncertainty around how you fit back into your social circle. Some people feel guilt, and others may feel betrayed by their body. And it is more likely than not that your survivorship journey will not be a straight line but instead will mean taking detours and having to overcome roadblocks along the way.

It is important to be kind to yourself, to recognize it takes time to adjust to a “new normal,” to avoid comparing yourself to the “old you” as well as to others, and to allow yourself the grace to adjust to the new rhythm of your life and to truly feel your feelings. You may experience a period of self-reflection and thinking through who and what is truly important to your happiness and well-being.

In survivorship those around you are also adjusting to the “new normal.” You’ve been through a lot and no one else will ever really know how your body, mind, and spirit spoke to you at the time of diagnosis and during treatment. Family, friends, and colleagues may feel unsure about what to say and do to support you. Some cancer survivors want to be treated as they were in the past and not as “the one who had cancer.” Others desire a direct acknowledgment of their journey and having the opportunity to talk about it. Sometimes relationships change and there is greater clarity about your expectations, which may mean not everyone goes with you on your journey. Compassion for and patience with yourself and others will help you find your way.

You’ve been given an opportunity for more days on earth. Self-care, self-reflection, social connection, feeling your feelings, and seeking additional help when you need it are critical components of your survivorship plan. This may also be a time to try something that may be new for you:

Take 2 minutes each day to reflect and ground yourself.
laughter medicine
acupuncture
guided imagery
mindfulness, including meditation
yoga and yoga nidra
journaling
music therapy
practicing gratitude, including gratitude journaling
art therapy
Take the time to learn to be less stressed.

YOU are NOT your condition. Remember the importance of living and not just not dying!

Contact Colette at:
[email protected]

Resources

The Day After....Cancer Survivorship

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