By Hester Hill Schnipper, LicSW, BCD, New York City, Bantam Books, October 2003, Paperback, $14.95, 320 pages
Hester Hill Schnipper is an oncology social worker specializing in working with breast cancer patients and their families. When she developed cancer herself in 1993, she describes herself as being “overwhelmed with terror, grief, and anger. How could I be helpful to anyone when my own heart was pounding and my soul trembling?,” she asked.
The answer to this question came when she began “to look at my patients and realize that I was surrounded by lessons in how to live with fear and sadness.”
This book is a very personal account of one woman's journey through the experience of living with a potentially life-threatening illness, from which being a professional caregiver could not protect her. She had to learn to “live life on parallel tracks of hope and dire possibility,” she wrote.
The journey begins with her diagnosis, which followed a period of about six months in which she felt that “something was not right.” The “something” had no name and no symptoms, but it was pervasive, real, and entirely consistent with her expectation that she would at some point in her life be diagnosed with cancer.
While this premonition of a diagnosis is very common among those newly working in oncology, it usually disappears as oncology caregivers gain more experience and perspective. This would not go away so that when she was finally diagnosed, a feeling of relief occurred as her body had now declared itself.
“The diagnosis of breast cancer brought me to my knees,” she tells us, and learning to manage the overwhelming feelings of terror and transform those feelings into active coping strategies is the primary challenge for anyone new to such a crisis.
The next chapters contain extremely useful information on managing the first several months after treatment—what to expect post surgery, chemotherapy, and/or radiation therapy in addition to discussing all of the maddening side effects that our patients rail about.
In addition to the emotional crisis associated with a diagnosis, it is as if the patient's body is in revolt—we know this by the experience of hot flashes, lymphedema, weight changes, memory problems or “chemo brain,” hair loss, fatigue, muscle stiffness, and possible cardiac complications.
‘The Cancer,’ Not ‘My Cancer’
Also offered are valuable tips on how women can manage these problems. The beauty of these tips lies in their nuances such as the use of the term “the cancer” rather than “my cancer.”
Cancer is not who you are but is something that has happened to you. The tips combine suggestions on ways to manage emotional or attitudinal aspects of cancer with those addressing practical aspects. An example is the discussion of self-image concerns along with practical ideas on how the use of makeup can positively affect how a woman sees herself.
Medical follow-up is discussed next, first dealing with how to juggle the specialist care that cancer requires with that required for the “routine” physical aches and pains that characterize the progression of life.
For patients feeling as if cancer will never end, the author offers the reassurance that for her, after some three years, the physical aspects of cancer had resolved allowing her to return to feeling well, although the “wellness” is of a different quality than that pre-diagnosis.
Health care professionals might find the projection of such a long length of time troubling, since they usually expect that once treatment is completed, the patient will be able to “get back to normal.”
Also, we might want to believe that the treatments we administer to patients are not as devastating as patients perceive them to be. Patients are aware of this phenomenon and I suspect it is one of the reasons they may minimize their side effects in order to “protect” their professional caregivers from how badly they might be feeling.
Never a Way to be Sure Cancer is Completely Gone
So too does Ms. Hill Schnipper sensitize the reader to the reality that patients must deal with the troubling realization that there never will be a way to be absolutely certain their cancer is gone? Dealing with this kind of uncertainty is the fundamental issue for patients and their families and for the physicians, nurses, and social workers who accept the challenge of this relationship.
The nature of follow-up is also discussed, including what to expect in terms of the use of tests to identify a recurrence. The author's conclusion that “less is as good as more” and that delays in identifying a recurrence will not make a substantive difference to the outcome should be reassuring.
The anxiety that accompanies follow-up physician appointments is discussed, along with ways to feel more in control of that potentially disabling emotional state. The medical tests themselves, including blood studies, are defined along with an explanation of why one test or study might be used rather than another.
This specificity helps many patients feel on top of a possible recurrence. However, women differ in their need for concrete evidence of what is going on in their bodies. Some feel reassured by vigilant testing; others need more distance to feel safe.
The ultimate message here is that the urgency patients feel must be put into the perspective that when or how many tests are performed will not make a substantive difference if or when a recurrence might happen.
Hormonal therapies are dealt with next, starting with tamoxifen. The use of aromatase inhibitors is compared with tamoxifen, as some initial studies appeared to suggest a better outcome for the inhibitors.
The reality, though, is that many more trials need to be conducted before a definitive conclusion can be reached. The author is clear about her belief in the efficacy of hormone treatment.
The fact remains that five years of treatment can seem incredibly burdensome for some women. However, the author cautions readers to appreciate the power of the disease and not to underestimate its strength and cleverness.
Complementary therapies are next, with the book presenting a useful balance in trying to determine a definitive conclusion about their value until more clinical trials can be established.
For some readers, the discussion of managing physical issues will be the book's primary value. For others, it may be sections focusing on relationships with partners, children, parents, and friends. For many women, relationships are strengthened; for others, the diagnosis will be the final assault to the viability of their marriage.
While patients would rather not believe this, the author offers guidance in how to assess the meaning of changes in a relationship and strategies to deal with them. She does a particularly good job of describing the impact of the diagnosis on husbands/partners.
Legitimizes Partner's Needs
The intensity of a women's emotional reaction to breast cancer sometimes leads to patients having little patience with the needs of their partners. This chapter legitimizes the partner's needs in such a way that patients may be more understanding of those concerns.
There is also a brief discussion of the needs of lesbian couples. Readers wanting more thorough information may explore some of the useful Web sites specifically oriented to lesbian issues and cancer, such as the Mautner Project (www.mautnerproject.org).
Sexuality, Fertility, Pregnancy
Sexuality, fertility, and pregnancy are also discussed. While newly diagnosed women usually have little interest in intimacy issues at the time of their diagnosis, patients are encouraged to review this material.
People with cancer and their partners need to know that when they are ready to resume intimacy, there are ways to manage sexual issues if problems occur as a result of the cancer experience.
The chapters covering relationships with children and parents contain concrete strategies on how to deal with the reactions of loved ones. The author offers valuable insight into ways to strengthen these relationships in addition to dealing with the fact that some friendships will end. She also makes it clear that this is not the patient's fault, hopefully comforting to patients experiencing such losses.
Cancer in the Workplace
The chapter on the impact of cancer in the workplace acknowledges and deals with the fact that some employers will have little interest in making an “accommodation” for people with cancer.
There will be coworkers who are not sympathetic, who say all of the wrong things, and who are self-serving at the expense of the patient. Also discussed is how to handle the issue of disclosure returning to work or applying for a new position, something that most patients worry about.
Genetic testing and the issues that raises for patients and their families are also discussed. Fortunately the discovery of genes related to breast cancer risk and the availability of genetic testing will be reassuring for many women.
It also will cause them to be anxious about themselves and the risk to their children. This is a very complicated issue, and the author again offers ideas about how to manage both the positive and the negative effects.
The remaining chapters deal with the possibility of death, getting support (including ways to figure out if support services are not meeting your needs), spirituality, and “life after breast cancer.”
The final chapter presents the idea that successful coping is not a question of “getting your life back” or finding “my old self.” She firmly believes that she has been transformed by her experience and that the “new self” she has discovered is profoundly empowering.
Her discussion of the need to relinquish the “old me” for a new one may not be easily accepted or understood by patients who are going through the rigors of treatment. The potential change in their bodies, combined with even a temporary loss of the predictability and “normalcy” of their lives and fears about dying may make this idea seem impossible following a new diagnosis or recurrence.
Patients may need to endure their anxiety and anger until the time comes when they can better evaluate the ways they have chosen to think and behave.
I would suggest that they read the book as a way to explore their own individuality and strengths. It is not always apparent to patients that they indeed have been able to “cope.”
Patients often underestimate or minimize their personal courage and need to identify for themselves how they were able to manage the experience. Physicians and other members of the health care team should make their patients aware of this resource.
The overriding theme is that women with breast cancer can deal with these challenges and may even use the experience to effect positive changes in their lives.
The author reflects a deep-seated belief that women are powerful and able to refashion their lives following this experience. She uses her own experience to both generalize and individualize a patient's experience and respects that each person's needs and ways of resolving problems are different.
Extraordinary Personal Resources
As an oncology social worker, I have always believed that life “can never be the same” after cancer treatment but that patients and their families can find meaning in an experience that is life changing. Hester Hill Schnipper has validated that belief in telling us her story.
This book is beautifully written, thorough and balanced in dealing with both the positive and negative aspects of a cancer experience.
The author does have extraordinary resources in terms of her family, profession, colleagues, and personal insight. She is married to the chief of medical oncology at Beth Israel Deaconess Medical Center, Lowell Schnipper, MD.
While it might be assumed that this would make the experience easier, it also means that there was little chance to avoid the impact of their professional knowledge and experience in dealing with her illness. The old adage about “knowing too much” must be acknowledged as a potential burden that most families do not confront.
While this relationship ultimately added to their ability to manage the experience, it deeply challenges the need most human beings have to “protect” those we love from our deepest fears. In addition, for professional caregivers, it totally destroys the fantasy that we sometimes indulge in that cancer could not happen to us, because somehow our commitment to oncology gives us a protective shield against what we see and work with every day.
The author and her husband provide a beautiful model of how human beings can overcome the personal and professional challenges that are part of living for all of us. The message is critical for those patients and professionals who might need to be invigorated by an account of personal struggle and the rewards of a life examined in continuing to enjoy the life and work that remain.
‘Please Don't Call It Psychotherapy’
If asked to be critical about any part of this author's work, it would be the use of the term “therapy” to describe her interventions with patients and their families.
I do not believe that the counseling services provided in most cancer programs constitute psychotherapy. To identify cancer counseling as therapy in the context of the normal adaptations that people need to make to incorporate this experience into their lives creates a potential barrier.
Unfortunately, many patients and their families consider the need for therapy as a sign of weakness and think that they have failed in some way to cope—“there must be something wrong with me if they think I need therapy.” Why complicate the issue with that particular language?
Patients and their families need psycho/educational support services that prepare them for what is to come, help them to identify how they might deal with it, troubleshoot potential strategies when the going gets rough and learn when and what kind of counseling might be helpful.
I do not believe that every patient needs counseling in its purest sense. They need to learn about the disease for sure, and to be empowered to deal with whatever the future holds. Cancer counseling can make this less stressful for most people, at less personal cost to them and quicker than going it alone.
Patients need to be educated about all that is available to them and how to assess their own and their family's needs so they can make good choices about what might be helpful.
For some people, trust in their physicians and health care staff may be all they need to successfully navigate the experience. For others, counseling may be essential and cancer programs should provide it as part of their obligation to provide comprehensive care for the entire range of the population they serve.
While all will not need it, I believe it is a moral obligation to offer it for those whose lives will be damaged by the experience. But please don't call it psychotherapy.