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Vulvar Cancer: Are You At Risk?

Of all the potential threats to a woman’s organs, vulvar cancer is perhaps both physically and mentally the most invasive and destructive disease imaginable. It is a diagnosis that causes both women and medical professionals alike to wince…

The female reproductive system determines our sexuality, offers the opportunity for us to conceive, and defines our sense of womanhood. Any cancer diagnosis will leave you feeling like you’ve been run over, but the knowledge that “the beast” is growing within your most private and sacred parts is a burden that can push the strongest woman to despair.

What is the vulva? Many women don’t know. The vulva consists of the external portion of the female genital organs. Included are:

* The clitoris. A small skin protrusion that is sensitive to touch.
* The labia majora. The two large, fleshy folds of skin that resemble “lips”.
* The labia minora. The small folds of skin that are inside the labia majora. This surrounds the openings to the vagina, and the urethra.
* The fourchette. This is the area where the labia minora (small lips) meet.
* The vestible. The space where the vagina opens.
* The prepuce. A fold of skin that is formed by the labia minora.
* The urethra. The tube that connects to the bladder, and allows urination.
* The anus. The opening to the anal canal, which goes to the intestines.

Vulvar cancer can manifest itself on any part of the external female genital organs, but it’s most often found on the labia majora or the labia minora.

Cancer of the vulva accounts for 4% of the gynecological cancers. The American Cancer Society estimates that 3,600 cancers of the vulva will be diagnosed in the United States, and about 800 deaths due to vulvar cancer are expected during the year 2001.
Mary’s Story

Mary* was a vivacious, forty year old woman who had battled infertility and won. Chelsea* came into the world eleven weeks early, but she was thriving, and Mary realized her family had been blessed. When the baby was approaching her first birthday, Mary felt a pain in her vulva. Distracted by the planning of the upcoming celebration, she ignored it for a week. Later, at a family gathering, the pain became so intense that she rushed into the bathroom to find the source, and was horrified to discover a very small lump inside her clitoris.

She went to her doctor, who thought it was a cyst. Relieved, but still in agony, Mary decided to go ahead with her family’s vacation plans. She spent the next three weeks in misery.

Upon returning home, she immediately phoned her doctor and scheduled a follow-up appointment. During the exam, the horrified physician exclaimed “Oh my God!” The growth had taken over Mary’s clitoris, and the two were indistinguishable from each other. A ring of tumors surrounded the opening to her vagina, making it almost impossible to insert even a pinky finger. Her cervix looked diseased as well, and Mary was referred to a gynecologic-oncologist, a doctor who specializes in cancer of the female reproductive tract.

She was diagnosed with vulvar cancer, stage IV, which has a very poor prognosis. A Computed Tomography Scan (CT scan) brought more bad news; there were over 200 nodules that had metastasized to Mary’s lungs. Hers was a very rare, aggressive type of vulvar cancer, and at the rate it was progressing she would soon be dead. Mary’s cancer was too advanced for surgery, so her doctor tried chemotherapy to prevent the cancer from spreading more.

Mary had six doses of chemotherapy. She also drank Essiac Tea, an herbal preparation known to boost the immune system. By the second dose of chemotherapy, amazing changes were noticed. The tumors on her genitals were “melting away.” By the fourth dose, her cervix was healthy looking, and the tumor ring around her vaginal opening was gone. After the sixth treatment, Mary had surgery to remove some scar tissue from her clitoris. A CT scan revealed one tiny pin dot on her lungs, thought to be scar tissue.

The full recovery was truly a miracle. Mary’s doctors still can’t explain why the chemotherapy cured her tumors; it wasn’t “supposed” to do that. The oncologist nearly danced a jig as he told Mary she was in remission. Though she is healthy and ecstatic to be alive, she has developed a chronic vulvar pain as a result of the cancer and its treatment. It took her a year to recover from the effects of the chemotherapy, and though it has been two years since her diagnosis, Mary muses “In some respects, it is like it was yesterday.”

Her husband was her rock through the ordeal, and they are all too aware of the fleetingness of life and never part without saying, “I love you.” Mary is grateful she was spared the ordeal of surgery. “The surgical aspects of vulvar cancer are the most difficult to overcome,” she says.

Kathleen Mazzella began having irregular menstrual cycles when she was thirty-nine years old. Upon consulting her gynecologist, she was informed that her Papanicolaou (Pap) smear had been abnormal, and she needed to have a procedure performed to laser the abnormal cells from her cervix.

A year later, Kath discovered a lump on her vulva. Concerned, she consulted two General Practioners and two gynecologists. All of them told her it was normal and there was nothing to be alarmed about. The lump persisted, and Kath asked one of the doctors to remove it. She was notified by telephone that the “normal” lump she had been living with for eighteen months was cancer.

Kath could never have been prepared for what came next. The oncologist told her she would need to have a radical vulvectomy, a surgery to remove the cancer from her external genitalia. This involved removing her clitoris, vulva and lymph glands. The surgery was followed by six weeks of radiation to the genital area. Physically, it took eighteen months for the numbness in the surgical area to subside; mentally she was numb for five years.

A sense of isolation, betrayal and insecurity in her role as a woman washed over her as she slowly came to terms with her loss. Kath was on a private roller-coaster through hell, and no-one, not even her supportive and loving husband, knew how to stop the ride.

The Human Papilloma Virus (HPV) is listed as a causative factor in some genital tract carcinomas, including vulvar cancer. Vulvar cancer may be preceded by abnormal cells (dysplasia) or warty growths on the genitals (condyloma). Physicians are seeing an increasing number of women with pre-cancer and cancer of the vulva in all age groups. Infectious diseases of the vulva, including HPV, are also on the rise.

HPV is the same virus that causes genital warts. But having genital warts does not mean you will get cancer, and having HPV doesn’t necessarily mean you will have genital warts. There are certain strains of HPV (strains 16 and 18 in particular) that are considered risky, and are thought to be part of the equation that can help trigger cancer.

No one knows the true statistics for HPV, but some estimate that up to 85% of the total population is infected. Over 40 million people in the United States have HPV, and there are 4 million new cases each year. It is sexually transmitted, but it can also be passed congenitally, on fingers, and even on inanimate objects.

Other risk factors for vulvar cancer include:

* Human Immunodeficiency Virus (HIV)
* Melanoma or “risky” moles on non-vulvar skin
* A family history of Melanoma
* Lichen sclerosis, a condition that causes itching skin and may slightly increase the odds of getting vulvar cancer.
* Vulvar intraepithalial neoplasia (VIN)which increases the risk for vulvar cancer, but usually does not progress to cancer.
* Having other genital cancers
* Smoking: Some doctors believe that the risk isn’t just from inhaling cigarette smoke, but also from the tar people get on their fingers from cigarettes. When a woman who smokes touches her vulva, or it is touched by her partner who smokes, the tar (a carcinogen) is transferred, and can potentially invite cancer. A male who smokes harbors nicotine and tar in his semen. When he has intercourse with his partner, her cervix and genitalia are bathed in this mixture.
* Age: older women are more at risk, but the numbers of younger women being diagnosed are on the rise.

Treatment for vulvar cancer can include:

* Surgery —1. Excision. The cancer cells, plus a margin of normal appearing skin around the cancer is removed. 2. Laser surgery. A powerful beam of light is used to destroy abnormal cells without making an incision
* Vulvectomy. The surgical removal of part, or all of the external female organs.
* Chemotherapy.
* Radiation Therapy.

After her own cancer diagnosis, Kathleen Mazzella felt the need to seek out other women who had been living with the same disease. “I thought I was the only woman in the world with vulvar cancer. I eventually found two other women with the same diagnosis, so I placed an ad in a magazine searching for others, and had thirty women reply.”

It spurred her to create the Gynaecological Awareness Information Network (GAIN), an outreach program serving women who have been diagnosed with gynecologic cancer. Kathy wants women who have been thrown the gyn cancer curveball in life, especially women who have been diagnosed with vulvar cancer, to know that they are not playing the game alone.