I've been diagnosed with cancer. Now I can't stop thinking about it. I'm obsessing over every little twinge. How do I cope with "Cancerhead"?
Any woman receiving a cancer diagnosis is likely to experience a wide range of fears. The best defense against these fears is accurate information. Although it may be difficult to imagine living with cancer, it is possible to learn to cope with the inevitable fears that accompany this disease.
I vividly remember the day I learned I had cancer. My doctor called with the pathology report from my D&C which stated I had endometrioid adenocarcinoma, FIGO grade 2. He reassured me that it was the "best" type of GYN cancer to have in that it tends to be slow-growing. Devastated, I hung up the phone. He would see me in his office in a couple of days to give me more detailed information on my diagnosis and discuss my initial treatment, which would be a total abdominal hysterectomy and removal of both ovaries. The surgery and staging of the cancer would be performed by a gynecologic oncologist, a doctor who specializes in the treatment of gynecologic cancers.
I would describe myself as a woman of strong faith with a positive outlook on life. However, with the cancer diagnosis came a deluge of "what-ifs," and cancer began to dominate my thoughts. Fear, anxiety, depression, anger, and sadness were common emotions that plagued me all hours of the day and night. In my quest for information, I discovered the Cancer Concerns Forum on the HysterSister's website. I learned that my "what-ifs" had a name - cancerhead. Time and again this term came up as women described their fears regarding cancer. I found that I was not alone. Psychologists and other experts agree that women diagnosed with cancer respond in similar ways.
1) Denial – There must be some mistake.
2) Anger – Why are you telling me this?
3) Why me? – What did I do, or not do, to deserve this?
4) Resignation – I can’t help myself; it’s beyond my control.
5) Acceptance – I will fight this with everything I’ve got in me.
(Cancer, 2007)
As I struggled through these various stages, I felt like I was on an emotional roller coaster. I would not know the stage of the cancer in my uterus until the pathology report came back after the surgery. The stage would determine the course of treatment and my prognosis. I cried frequently due to the stress of waiting for doctor appointments and test results. I questioned whether the cancer had spread to other parts of my body, whether I would need to have radiation treatments, or even worse in my mind, chemotherapy. I did not want to take this journey or deal with the uncertainty of my future. All of these feelings were normal, but waiting for the answers was almost unbearable. Cancerhead is powerful!
On my third day post-op, my pathology report was available. The stage of the cancer was 1b, grade 2. The cancer cells had spread beyond the lining of the uterus, but less than 50% of the uterine wall had been invaded. This meant no further treatment was deemed necessary. I will be followed closely for the next five years, but my prognosis is excellent!
End of story, end of cancerhead, right? Wrong! Although time and healing lessen its effects, all cancer survivors know that cancerhead can come knocking at the door at any time. Women undergoing radiation treatments or chemotherapy must conquer new fears of the unknown. Fear of recurrence is common for all, and cancerhead is likely to show up a week or two before a follow-up exam. Waiting for test results is particularly stressful. Simple aches and pains or symptoms of any common illness can lead to fear that it must be cancer. And so it goes. I had a mild attack of cancerhead before my first follow-up exam. The gynecologic exam was normal, but a mammogram came back abnormal with a recommendation for breast biopsies on two suspicious masses. Cancerhead returned with a vengeance! Even though statistically 80% of breast lumps are benign, I felt myself spiraling into depression over the "what-ifs."
If cancerhead cannot be entirely eliminated, can it be minimized? The answer is "yes." I have adapted nine suggestions from a breast cancer website, which I feel would be helpful to those with GYN cancer as well.
1) As you begin gathering information to make decisions, get to know the people on your medical team and make every effort to meet them in person. Turn faceless doctors into known resources. These are the people you've hired onto your team to help you. You'll find out who is the best communicator, who can answer which questions, who is available to help you when you need it most.
2) Find a doctor who communicates with you in a way that is comfortable for you, who invites your questions and takes your concerns seriously, who gives you as much or as little information as you feel comfortable with at any given moment.
3) Find out what to expect (from tests, procedures, treatments). Minimize surprises.
4) Make plans with your doctor about how to receive test results in a prompt way. If possible, try to schedule important tests early in the week, so you don't have to wait over a long weekend, when lab work may slow down or doctors aren't communicating with each other.
5) When you know you're going to have a challenging week (a test coming up or a round of chemotherapy), don't plan to do things that are stressful for you (balance the checkbook? make Thanksgiving dinner for twenty? run a big meeting at work?). Use your support systems—friends, movies, prayer, biofeedback—anything that works to help you get through it.
6) If well-meaning people try to tell you stories about others struggling with cancer, stop them RIGHT AWAY and say: "I only listen to stories with happy endings!"
7) If you reach a point where difficult emotions are getting in the way of your functioning or taking care of yourself, speak with your doctor about the role of medications that might help ease your anxiety, depression, or sleeping problems.
8) Join a support group—a place to share your cancer experience openly with people who understand. Do whatever makes you feel connected to others in a positive way, as a woman who is moving beyond cancer.
9) Work on ways to feel more positive about your life: Seek out productive, life-enhancing experiences; accept yourself for who you are; spend time with positive people who affirm who you are and how you've chosen to deal with this disease.
(Cancer, 2007)
I found several of the above suggestions helpful in dealing with cancerhead. However, while having a positive attitude is a worthwhile goal, it is not easily attained. According to Kleban (2002), a social worker who supports women dealing with cancer, "Having bad feelings and down days is neither good nor bad - it's just normal.” The best reason for having a positive attitude is that you will enjoy better days and find your emotional recovery less difficult.
As for the rest of my story, the breast lumps were benign. Once again, I have swept cancerhead under the rug - at least for now. Most women, including myself, find that working through cancer fears makes them stronger. Reading advice and encouragement from hystersisters who have traveled the road before me with undeniable courage and strength, often brings tears to my eyes. I have learned that despite all our fears, there is hope.
References
Cancer. (2007). Coping with fear of diagnosis. Retrieved January 30, 2008, from
This content was written by a member of HysterSisters.com as a non-medical professional based on discussions, resources and input from other patients for the purpose of patient-to-patient support.
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