In 1986 when I was lying in a hospital bed in Dallas after my mastectomy, a group of 23 cancer survivors were meeting in Albuquerque, New Mexico, to discuss cancer survivorship. Their work would become infinitely important to me and my recovery from cancer in the years to come. What those survivorship pioneers initiated that day became the National Coalition for Cancer Survivorship (NCCS).
Being diagnosed with cancer changes everything about your life. Yes, there are those few who have a simple diagnosis, breeze through treatment and then actually get back to some form of “normal” — the life they lived before they heard the words, It’s cancer.
But for the vast majority of us, cancer is a game changer that impacts every aspect of who we are and who we will become, as well as our family and friends. The group in Albuquerque began the survivorship movement, providing the first definition of a survivor as “from the moment of diagnosis and for the rest of life.” They also called for recognition that the physical, emotional and psychosocial needs of survivors were not being addressed by the cancer community — and it was time that they were.
One of the most outspoken survivors at the meeting was a doctor and cancer survivor named Fitzhugh Mullan, a pediatrician who had written the first article on the emotional stages of cancer survivorship, “Seasons of Survival: Reflections of a Physician with Cancer.” Mullan named three survivorship stages: acute survivorship (diagnosis and treatment), extended survivorship (the time of watchful waiting when treatment ended) and permanent survivorship (long-term remission).
In the next two decades, the survivorship language and timeline was adapted to add the growing number of survivors who didn’t fit in Mullan’s design — those who have chronic cancer and those who have remittent cancer that goes away and then comes back. In 2008 Kenneth Miller, MD, an oncologist who founded the survivorship program at one of the major cancer centers in the east, broadened the definition yet again.
He added four subgroups of permanent survivors: those who are cancer-free and asymptomatic; are cancer free but with long-term/late problems (such as fatigue or depression); develop second cancers (unrelated to earlier treatment); or have secondary cancers (related to earlier treatment).
As with most of the documents of this time pertaining to the needs of survivors, Miller’s research was recognized by the small but growing survivorship community. As happens with change in any large, dynamic system such as medicine, it takes building the body of research before anything actually changes, and adding survivorship care wasn’t popular because insurance, except in a few situations, would not pay for services that were not considered treatment.
So, the early research brought about little change except for those few outliers who had already begun looking at patient- centered treatment and care. Yet the research continued to show that change was needed, and the need was great.
Living With, Through and Beyond Cancer
At age 37 and a new mother when I was diagnosed, I was highly motivated to live. I wanted to raise my daughter, then only one year old.
Because the idea of providing any kind of emotional support was nonexistent when I went through treatment, I suffered through some of the worst nausea and vomiting my doctor had ever seen. This was before there was an effective antiemetic, which came a few years after my treatment ended.
When my oncologist finally cut the dosage of the trial drug I was taking, I worried that it would not kill the cancer, an idea he sort of laughed off, explaining that the dosage was arrived at by what worked on metastatic cancer because that was the only one they could measure — if the woman lived or lived longer than anticipated, then it worked.
Well, that was reassuring … So I went home and, exhausted, blocked the stairs, so my now 15-month-old could not get up the stairs while I took a nap to attempt to ameliorate the overwhelming fatigue that dominated my life.
When my four months of chemo was over, I began the wait. We all know what “the wait” is like. We spend our days wondering if every ache and pain is a sign the cancer has returned. Only in the past decade has anyone begun to look at fear of recurrence, now recognized as a major unmet need of survivors — indeed, as one of the most significant issues of survivorship that has not been addressed.
Because I am that “I am woman” kind of gal, I just pushed on, not realizing how debilitating fear can be. I couldn’t sleep, and when the Internet finally got up and running I connected with a digital list of survivors that absolutely did not help, but the fact that we were all up in the middle of the night should have given me some kind of clue that this was a universal issue.
Now when I look back, I can see that the woman I was before cancer was gone, and this new person had moved in. I was a journalist by training and had researched my treatment and chosen a good physician. I read about what I could do to help my body heal, adding vitamins, a healthy diet and some natural concoctions that I laugh at today. There was no science that any of it would matter, but I wanted some semblance of control over my future. It angered me that no one asked me lifestyle questions to try and arrive at why I had gotten cancer in the first place. When I complained about this to my doctor, he said it was easier to find the cure than the cause.
All my energy was in what I call “head work,” research and knowledge. It was all about cure. Not for another few years would I come to understand that cancer is a dual journey. It is of course physical, which is treatment and your physical self and being cured.
And, it is emotional, your soul and the person you will become when the reality of mortality is absorbed into your “self.” When someone said, “Aren’t you glad to get back to normal,” I snorted. That old normal was gone. I had to find the “new normal” of being a cancer survivor.
I looked for support groups, but the only ones I could find were peer-led by people who started them because they were desperate. Not until my surgeon started a support group in 1989 did I understand clearly that while I was considered cured, I was far from healed.
On that day in my surgeon’s office for my three-year checkup, I recall sitting on the exam table. When she said I was fine, I burst into tears. I could not stop crying and I remember asking her why, if I was well, did I think of dying so much?
She said she had seen many of her patients grapple with the same issues and had started a support group in her office that I might want to think about joining. “Where do I sign up,” I asked. She paid for a therapist to facilitate the group, one of the first in the city of Dallas.
Long-Term and Late Effects
I found healing because my surgeon saw what the research was bearing out: it wasn’t over when it was over. The medical community needed to recognize that the quality of our lives was a huge part of our experience in the cancer journey, and research was mounting that part of our treatment had to include not only physical well-being but also psychological well-being, social well-being and spiritual well-being.
If a man is cured of cancer but then declares bankruptcy, he is far from healed. If a woman is cured of breast cancer but can no longer have sex, she is far from healed. If a man or woman is cured of colon cancer but cannot get out of bed due to depression, they are far from healed. If patients experience ongoing peripheral neuropathy, the pain and loss of feeling in the extremities, it may affect their ability to work or even drive. Those who undergo treatment for head and neck cancer must often live with disfigurement and pain. If those issues are not addressed, the person is far from healed.
We were living as a result of new and growing options for treatment. But with that longevity, we were learning that the treatment that saved our lives could result in long-term and late-effects, such as fatigue, peripheral neuropathy, changes in physical ability and others. Late effects can appear 5, 10, 15 or even 20 years after treatment ends. These can also be more than physical; they can be financial, related to insurance or employment.
Depending on the treatment, late effects can be cardiac, pulmonary, hormonal or even a secondary cancer. Cognitive dysfunction, which may appear during treatment, may leave a patient with loss of the ability to work or care for family. Fatigue can be debilitating for the percentage of patients who struggle with it after treatment ends. Peripheral neuropathy, the pain and loss of feeling in the extremities, can impact the ability to work.
Ironically, most patients are unaware that they are at risk for these late effects, since few patients receive education about the drugs or other treatment they receive. Most finish treatment and are sent home with celebration — but no information about how to deal with a potentially diminished quality of life.
One of the 23 people who met in Albuquerque in October 1986 was an oncology nurse named Susan Leigh. Leigh, a nurse in Vietnam at the beginning of her career, was diagnosed with Hodgkin’s lymphoma shortly after her return in early 1972. Then in 1990 she was diagnosed with breast cancer, a newly identified result of the radiation therapy she had received for the lymphoma.
Leigh became a survivorship consultant, helping cancer centers understand the concept. Then in 1995 she was was diagnosed and successfully treated for early-stage bladder cancer, which may or may not have been a result of earlier treatments.
Knowing that she was at risk for heart problems from her early treatments, Leigh took follow-up guidelines to her primary care provider and requested baseline cardiac testing.
In 2013 she learned she had multiple problems with her heart that were almost certainly a direct result of her prior therapies. She points out that because non-oncology healthcare providers have so little knowledge of long-term and late effects, she had to educate her primary care physician on her follow-up needs.
The American College of Surgeons Commission on Cancer (CoC), a consortium of professional organizations dedicated to improving outcomes and quality of life for cancer patients, accredits cancer centers who adhere to a set of standards they set. There are currently more than 1,500 CoC-accredited cancer programs in the U.S. and Puerto Rico, representing 30 percent of all hospitals and more than 70 percent of newly diagnosed cancer patients annually.
In 2012, those standards were amended to include not only the psychosocial needs of patients but also patient navigation, distress screening and a survivorship care plan that details treatment and offers patients a blueprint for future monitoring. The new standards were to be implemented by 2015, a date that had cancer treatment centers howling in protest. In 2014 the implementation dates were changed to allow a phasein program that will include all accredited centers by 2019.
There were finally teeth in the demands to recognize cancer survivorship as a separate period of the cancer journey with its own issues and outcomes. However, despite the CoC standards, survivorship programs and care are still lacking in many areas. Just as each cancer treatment center offers its own template for care, each has to figure out how to integrate survivorship care into its design.
All of this means that survivorship care is still too little, too late and, in far too many cases, nonexistent. This leaves it in the hands of survivors to advocate for themselves and their caregivers to research what they need and where to find it.
Being Your Own Advocate
The use of the survivorship care plan has been recommended since the Institute of Medicine (IOM) issued a report in 2006 recommending that every cancer patient receive a plan that is individualized to his or her care at the end of treatment.
Susie Leigh considers herself an example of why survivorship care plans are imperative as part of the end of treatment.
The plan should include not only a list of all medications received and their possible long-term and late effects, but also guidelines for monitoring their upcoming care and how to maintain their health. This recommendation was made in response to the 2005 publication from the IOM entitled From Cancer Patient to Cancer Survivor: Lost in Transition that recommended four necessary elements of survivorship care: prevention of recurrent and new cancers and other late effects; surveillance for cancer spread, recurrence, second cancer and assessment of psychosocial late effects; intervention for consequences of cancer and its treatment ; and coordination between cancer specialists and primary care providers to ensure that all of the survivors’ health needs are met.
Since then the number of care plans that have been developed by various cancer-related organizations has skyrocketed – with no one plan adopted universally by cancer centers. Also lacking is enough research that looks at the issues and what is needed.
This leaves survivors on their own in determining what plan to use and how to get their oncologist and/or nurse to provide the information that they may need down the road.
Like Leigh, don’t hesitate to raise these issues with your providers. Seek out other survivorship resources from national organizations, as well as advocacy groups and online communities specific to your tumor type. This will provide you the information and tools you need to be your own advocate and help you to navigate this vital, and enduring, part of your cancer journey.
Kathy LaTour's article was right on target. I, too, was diagnosed in 1986 and given a dire prognosis about my time left on earth. I said, "I'm too busy to die. It's not on my calendar and no other woman will wear my jewelry." Somehow its worked for 29 years and three cancers. I remember the NCCS in Albuquerque and Susie Leigh very well. The founders of NCCS were my heroes and sheroes. They steered me in the right direction, toward survivorship. I will always be grateful for them sending Brad Zebrack and Joanna on a bike ride around the country talking about this new thing called "survivorship." When they came through Jacksonville and I got to meet them, I realized how important planning for the future after treatment was. I realized how important becoming your own advocate was and I quickly joined NCCS and spent four years on their board as their communications chair. NCCS changed my life and gave me a future to look forward to. I try to pass this on through my Bosom Buddies organization that I founded in 1988. Twenty-seven years later, I'm still at it, having served more than 7,000 women and preaching the gospel of survivorship. Thanks, Kathy, for retelling the story and the importance of it.
Bobbi de Cordova-Hanks
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