ONGOING CARE

For the first five years after the original cancer treatment, a clear
cell cancer patient should have a follow-up exam every three to six months. After five years, physicians generally recommend an annual examination. Some clear cell cancer survivors prefer to have a follow-up exam every six months.


FOLLOW-UP CARE


Here are guidelines for follow-up care. A follow-up examination consists of:
In addition your doctor may recommend:

Estrogen Replacement Therapy


It is not known whether there is any additional risk for a DES daughter with a clear cell cancer history to take estrogen medication at the time she reaches menopause (or, earlier, at a time of sudden onset of menopause due to removal or irradiation of ovaries). The decision whether or not to take estrogen must be made on an individual basis with one's doctor. Issues such as family history of breast cancer and heart disease, as well as habits of diet and exercise must be considered.

Estrogen Replacement Therapy (ERT) has many potential benefits, including the relief of menopausal symptoms (hot flashes and vaginal dryness), and the probable prevention of osteoporosis and heart disease. However, the long term use of ERT has been clearly associated with an increased risk of endometrial (uterine lining) cancer, and may also be associated with an increased risk of breast cancer. Post-menopausal women with a uterus are prescribed a combined hormone replacement therapy (HRT) with estrogen and progesterone to reduce the risk of uterine cancer. If you have had a hysterectomy you do not need progesterone.

A clear cell cancer patient whose ovaries have not been removed or irradiated will continue to have ovarian function until menopause. Her decision about ERT will be made at the time she reaches menopause.

Some clear cell cancer patients, however, lose both ovaries and experience a sudden onset of menopause at the time of cancer treatment. In addition the relatively young age at surgical menopause means living for many years without the protective benefits of ovarian function.

Therefore, every woman with a history of clear cell cancer must evaluate the use of ERT. Some women choose to relieve the symptoms of menopause with estrogen. A common prescription is 0.625 mg of Premarin taken daily.

Some women find the estrogen patch (Estraderm) to be quite effective. Others adapt to the changes of menopause without estrogen, or may try alternative methods such as acupuncture or herbs.

Some women may use estrogen for a short period of time to offset the immediate symptoms of surgical menopause. In time they may choose to gradually reduce the prescribed dosage until it is no longer used at all.

You should be comfortable with whatever decision you make about ERT. Talk frankly with you health care provider about the benefits and risks.

WHAT TO ASK


Questions to ask your doctor about estrogen replacement therapy (ERT):

Your Self-Esteem and Your Body


A cancer that so dramatically affects your sexuality and health may naturally alter your view of yourself. Self-esteem arises from many feelings we have about ourselves, our bodies, and our abilities. In a sense, a woman who has had clear cell cancer is a new person with a new identity. Your body is unexpectedly changed by cancer and treatment. Some clear cell cancer survivors say it feels as though they leave behind the person they once were. Each woman with clear cell cancer needs to form a new relationship with her body.

Many women say that one of the hardest things about clear cell cancer is that it is a cancer that doesn't show on the surface of the body. You have scars, and there are parts of your body that are changed by treatment ­p; but they don't show on the outside of your body. Few other people know what you have been through. You may have pain or dysfunction that no one else can see, or in a part of your body that is not usually talked about. Some clear cell cancer survivors say it's like having an invisible disability.

It is important to recognize that a diagnosis of clear cell cancer and subsequent cancer treatment is a profoundly disruptive event. Many women who are recovering from clear cell cancer benefit by seeing a professional counselor or therapist. They find it helpful to talk to someone who can help them discover the feelings that are difficult to talk about. Many women also find that meeting or talking with other women who have recovered from the cancer is an excellent form of support. You can tell your doctor you would like to meet other women with a history of clear cell cancer, by making your name available to them through your doctor; or you can contact the DES Cancer Network, a national organization that provides information and helps women with clear cell cancer contact one another (see page 43).

You may also contact the Registry for Research On Hormonal Carcinogenesis (Clear Cell Cancer Registry), an international registry of clear cell cancer cases. By registering you can help scientists and the public learn more about the treatment and cause of clear cell cancer (see inside back cover).

"Aside from the medical trauma of clear cell cancer, it was my emotional health I feared for. I couldn't have children so I didn't feel like a woman. Finally I realized I can have children through adoption. I will always want my own and that hurts incredibly, but I will have a family. Now I'm looking forward to being a Mom."

WHAT TO ASK


Questions to ask your doctor about support:

"Meeting other women who have coped with clear cell cancer is the single greatest thing I've done for my own healing. The experience is unbelievable, a unique connectedness that gives me strength and hope."


Infertility


For many clear cell cancer patients, losing the ability to have children is the most painful long term outcome of having cancer. Like cancer, infertility is the unexpected and unimagined. In the midst of the challenge of surviving cancer and adjusting to the loss of major organs, there can be feelings of shock and grief about reproductive loss.

Cross cultural studies show that, universally, infertility is one of the greatest losses a human being can experience. For many women, healing the hurt of infertility is a lifelong process, changing as a woman passes through each stage of her own life. The chance to know and talk frankly with other women who are unable to have children is a valuable resource. You can get a list of organizations which help people cope with infertility by calling a DES consumer organization (see page 43).

Many clear cell cancer patients find creative ways of coping with reproductive loss. Some adopt children and raise a family; others find ways to have children in their lives through special relationships with friends' and family's children. Teaching, volunteering, and playing with children is another way to bring the joy of children into one's life. Each woman with clear cell cancer finds her own best way to heal the hurt of infertility and create new opportunities for her life.

Sexuality


Clear cell cancer affects the most private parts of a woman. Any cancer has a dramatic effect on the way we feel about ourselves and our bodies. But a cancer that affects the genitals and reproductive system may have an especially strong impact on feelings about one's sexuality. After clear cell cancer, the area of your body that is a source for your feelings about your sexuality and womanhood may be associated with pain rather than pleasure.

A woman with clear cell cancer may need to re-educate herself to feel pleasure in the parts of her body that have felt so much pain because of the clear cell cancer. Re-educating one's body after clear cell cancer is possible. It is not easy, but with time, healing, and a loving partner, it is likely you will be able to experience the pleasure of your body again.

"After my treatment I had many questions about sexual functioning. I've learned to ask my doctor straight out. I can't wait for him to bring up the subject. Once I ask the questions, he is able to give me information that helps."


WHAT TO ASK


Questions to ask your doctor about your sexual health:

Talking About Clear Cell Cancer


Because clear cell cancer in young women most often develops as a result of DES exposure, the relationship between a mother and daughter can be especially sensitive. Even though one's mother is not to blame for taking DES, a mother may feel overwhelmed by grief and guilt for her daughter's losses.

It is not unusual for a clear cell cancer patient and her mother to hide their feelings from one another. The daughter may not want to let her mother know how painful it is to have clear cell cancer because she is afraid of seeming as though she is blaming her mother, or causing her mother to feel worse. The mother may not want her daughter to know how badly she feels about taking DES because she is afraid of showing her feelings and adding to her daughter's worries.

At some point many daughters and mothers find a way to speak to one another openly about their feelings. Even small efforts at communication help open the doors to freer expression and healing.

One method that has helped some women is to imagine asking the question, "If there was one thing I wish I could say to my mother/daughter it would be..................." (fill in the sentence.)

Then tell your mother/daughter, "I've been thinking, if there was one thing I wish I could say to you it would be....................." (fill in the sentence.)

You may actually say the "one thing" directly to your mother/daughter. Or you may find the process informative and healing, just by thinking through the exercise for yourself.

Talking openly with friends about clear cell cancer is also helpful. You can tell friends as much or as little as you wish about your experience, and invite them to be honest with you about their concerns.

"The whole experience with DES and cancer is something my family had difficulty talking about. Because of the area that was operated on, they didn't feel comfortable asking. Once I began talking about my feelings, it became easier for my family to talk too."



COMMUNICATING WITH YOUR DOCTOR

Conclusion


For those of us who have had clear cell cancer, the experience will always be a big part of our lives. The experience of having cancer never goes away, but it is one part of who we are. There are many ways a woman who has had clear cell cancer can go on to live a productive and fulfilling life. Understand and trust your own process of healing and your own special appreciation of your health.

HOMENEXT

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