“How does it feel not to be a woman anymore?”
An acquaintance asked Brenda Hartman that question after the hysterectomy that followed Hartman’s ovarian cancer diagnosis. Hartman still shakes her head when she recalls the question.
Hartman, diagnosed with ovarian cancer at 32, is one of thousands of women who experienced the most deadly of the gynecological cancers at a young age. Although most women with ovarian cancer are over 45, young ovarian cancer survivors face a host of challenges that distinguish them from older women with the disease.
Young survivors are different
“The Young Survivor Network defines “young” not so much chronologically but in terms of where a woman is [in terms of life experience],” said Kathleen Gavin, executive director of the Minnesota Ovarian Cancer Alliance (MOCA). “The members are as young as high school up to about 40.”
The Young Survivor Network is a MOCA program that provides education and support for young women. It is a testament to both the power of the group and the lack of support for young women with ovarian cancer that the Young Survivor Network also reaches out to provide support to survivors across the country. Young survivors may face specific issues, including dating after ovarian cancer, premature menopause and loss of fertility prior to building or completing their families.
“Many of the young women have germ cell tumors,” said Patricia Judson, M.D., an assistant professor at the University of Minnesota medical school who practices gynecologic oncology. “It’s a different type of tumor from [the more common] epithelial tumor. The incidence of epithelial cancer increases with age. Germ cell tumors, in general, are pretty curable.”
Ovarian cancer wasn’t supposed to happen to healthy young women like Brenda Hartman. At 32, Hartman was a vegetarian whose diet was heavily weighted toward grains. She bicycled everywhere, including to graduate school, where she was pursuing a double doctorate in social work and psychology and planning a career as a college professor. She was a newlywed-married just three months-who was looking forward to having children.
Hartman didn’t link her physical symptoms-constipation, abdominal bloating, searing abdominal pain-to ovarian cancer. “I figured the pain had to do with ovulating,” she said, “or stress.” The pain was so severe that she passed out briefly several times.
When Hartman was finally diagnosed with ovarian cancer, it was stage 4, the most advanced kind. Cancer had spread beyond her ovaries and even beyond her abdomen. “I was given a 5 percent chance of living 24 months,” Hartman recalled. “They didn’t have statistics for [longer] because no one lived longer than that.”
Along with chemotherapy, a hysterectomy and other surgeries, Hartman said she learned “everyone has their own healing path.” She employed nutrition, vitamins, lots of imagery and meditation as she prepared to die. She spent a year in and out of the hospital, “mostly in,” she said.
Hartman discovered something priceless in the process. “Preparing to die allowed me to live every day,” she said. “Cancer is a huge filter: It separates what’s meaningful from what doesn’t matter.”
Hartman focused on living, and she found her priorities shifting. She never went back to graduate school. “It didn’t match who I was anymore,” she said. When she went to her minister for help after she was given weeks to live, “he said, ‘let’s plan your funeral.'”
That was 20 years ago. “I had a spontaneous remission. It’s a miracle. There’s no medical explanation for what happened to me.”
Hartman found that her cancer allowed her to become a spiritual person vs. a conventionally religious one. She became a therapist, focusing her work on cancer patients. “Cancer patients are remarkable people,” she said. “They are determined. They are some of the most courageous people I’ve ever met.”
Hartman considers herself a cancer patient, albeit an inactive one to this day. “Once a cancer patient, always a cancer patient,” she said. “I would never give up my cancer experience and what it’s brought me.”
Pinning her prom dress
Twenty-eight-year-old Kristen Larson does not look like an 11-year cancer survivor. She was diagnosed with ovarian cancer at age 17, a week after her high school prom.
Like Brenda Hartman, Larson had symptoms that she initially attributed to other causes. She wondered if the weight gain in her abdomen, pain, nausea and fatigue might be symptoms of an ulcer brought on by worry about her father, who was being treated for bladder cancer.
A month or two before prom, the petite Larson bought a dress in her usual size 2. By the time of prom, it no longer fit. “I had to buy a tummy-sucker thing,” Larson said. “It did nothing for my expanding stomach.” When she put the dress on, a seam ripped. She went to prom with the dress pinned.
Finally Larson went to her mother, who took her to their family doctor. The doctor and his staff were convinced at first that Larson, who was not sexually active, was pregnant. After tests, the doctor diagnosed Larson with an ovarian cyst. He told her that if it was larger than a grapefruit, it would have to be surgically removed.
According to the radiologist who read the tests, the growth was the size of a football. Her family doctor said, “I’m sorry, but you really shouldn’t go to prom.” Informed that prom had been a week prior, the doctor was astonished that the “cyst” had not burst.
She was referred to a gynecologist for surgery, which was scheduled for five days later. “I spent that weekend in misery,” Larson said. “By Monday morning I looked seven to eight months’ pregnant.”
That day, at a routine pre-operative consultation, the gynecologist who examined Larson was so alarmed that she rushed her into surgery that day. During surgery, the doctor realized that the cyst was, in fact, a malignant tumor. Along with the tumor, she removed one ovary, the attached fallopian tube, lymph nodes and omentum (an organ in the abdomen). She left the other ovary, and told Larson’s parents, “I didn’t want to do a full hysterectomy-she is only 17, and has a full life ahead.” The surgery lasted more than seven hours.
Larson did not think about dying, she said. “I thought, ‘I’m glad I’m dealing with this rather than someone else because I know I can get through this,'” she said. She was told that because the cancer was caught early, her chances of survival were good. And she chose to have very aggressive chemotherapy.
“It was really naïve of my family and I, but we thought, ‘good thing it’s not cancer of a vital organ.’ We didn’t know anything of ovarian cancer. We thought that [if she became infertile], I could always adopt.”
But that attitude wore off a bit. “It was difficult to think that I might not be able to get pregnant. I definitely want to be a mom.”
She is not sure whether or not she is infertile. “It’s questionable,” Larson said. “They tell me I probably can [become pregnant.]”
That summer Larson watched her high school friends “go to the beach, work at the Dairy Queen, chase boys … all the normal stuff. It was hard seeing my friends do all the normal stuff. At first I was in chemo from 8 to 4 Monday through Friday. The following week I’d be wiped out from the treatment.”
Larson found that cancer changed how some of her friends related to her. “A couple of great friends called me all the time, treated me normally. They’d stop by without notice and force me to go out for a ride. Other friends, really good friends, shied away from anything that had to do with me. They quit calling. I tried to understand that, but I was really mad.”
Chemotherapy was, Larson said, “very hard on me physically, emotionally, spiritually. My mom would give me foot rubs at night and tell me, ‘Krissy, we just have to put it in God’s hands. We have to let him know when we can’t handle any more.'” Larson’s Catholic faith sustained her through her treatment and up and down emotions. “I was thankful for being alive, angry I had to go through what I did. Sad, sick, happy,” she said.
Ovarian cancer did not change who Larson was. “I’m a positive, upbeat, happy person,” she said. “I was that way before, and I like to think I still am. But the difference is, I now know how precious life is.”
Infertility came first
Sarah Noonan’s first clue that something was wrong occurred when, after trying for nine months, she was not pregnant. She didn’t link her infertility to the infrequent “horrendous periods with lots of pain and bleeding.”
Noonan’s family practice doctor did a transvaginal ultrasound and found three masses on her right ovary. Two looked like benign cysts; the other had “more complex properties.” He referred her to a gynecologist.
The doctor looked at her, Noonan said, “and saw a young, healthy woman [she was 31 years old]. He said, ‘Let’s just track your temperatures for two or three months [to check her ovulation], and have your husband tested [sperm count].”
Three months later she was still not pregnant, and the doctor recommended laparoscopic surgery to remove the mass. “When they took me into the [operating room], we thought it would be a day procedure. In surgery, they had the biopsy read and said they would have to refer me to an gynecological oncologist.
“My husband and mom were both shocked and upset. When I woke up in the recovery room, still kind of out of it, the doctor said, “Sarah, you have cancer. You’re going to need a hysterectomy.”
When she was wheeled out of recovery, Noonan said, “My family surrounded me. They didn’t really say anything. No one knew what to say.”
The gynecological oncologist, though, was hopeful that Noonan’s fertility could be preserved. “He said the pathology results were ‘not terrible … all I see is cancer on your right ovary. We may be able to keep the left ovary and your uterus.'”
In the midst of surgery, the surgeon discovered that Noonan’s cancer had spread to both ovaries and her uterus. He gave Noonan’s husband, Mike, a choice: extensive chemotherapy with an increased risk of recurrence and death, or a total hysterectomy and removal of both ovaries. Mike Noonan gave the go-ahead to “just take everything out.” Sarah Noonan explained, “We had talked about it and though we were hopeful [it wouldn’t be necessary], we knew we would do what we had to … it was kind of a no-brainer for us.”
Mike Noonan, terrified that Sarah was going to die, put on a brave, smiling face. “He … held my hand and said, ‘Everything went really well. They think they got everything. But they had to take everything out.” Noonan had a complicated recovery, and couldn’t start chemotherapy for two months. “There were times when we would both cry for an hour, asking ‘Why did this have to happen to us?'”
She found herself grieving for the children she would never have. “I think for me, the hardest thing is the loss of not being able to feel what it’s like to be pregnant.” She and Mike haven’t decided if they want to build a family another way. “It’s something that’s still very much in the talking stages,” Noonan said. “After cancer, your life, priorities, and perspective changes. [Parenting] might be a part of our future, or might not be.”
Surviving and thriving
Today, Noonan serves as vice president of MOCA’s board and is co-chair of the Young Survivors Network. She said volunteering with MOCA “helps me keep going on,” by turning her experience into something positive for herself and others.
Those feelings are shared by Larson, who earned a master’s in public health and works as MOCA’s public education program manager, and Hartman, whose work with cancer survivors is one of the joys of her life. But the three women share more than a cancer diagnosis.
Noonan, Larson, and Hartman all have a certain amount of “survivor’s guilt.” Hartman talks of an 8-year-old client screaming, “I wish you were dead, not my mommy! Why are you still alive?” She told him, “I don’t know why.”
Along with survivor’s guilt, Noonan copes with hot flashes, lack of sex drive, and osteoporosis, all side effects of the surgery that saved her life. But mostly, she is determined to live the best life she can. One high point for Noonan was being in the delivery room when her sister-in-law gave birth. “I got as close to giving birth as possible without doing it myself,” she said.
Noonan speaks for all three women when she said, “It is so hard to lose people who had such an impact on your life. It’s important for [survivors] to support each other, to be as informed as we can about the disease.
“But it’s not just about the disease-it’s about the women who died, and those who are still fighting. We keep going to support the ones who are struggling, and for the ones who can’t.”
Fast facts on ovarian cancer
1 in 67 women in the U.S. will be diagnosed with ovarian cancer
20,000 women will be diagnosed with ovarian cancer this year
15,000 women will die from ovarian cancer this year
• There is no screening test for ovarian cancer (the pap smear is for diagnosis of cervical cancer)
• There is no vaccine or other way to prevent ovarian cancer
• Women who have had breast cancer are at increased risk
• Women who carry the mutated BRCA1 and BRCA2 gene are at increased risk
• Women who use estrogen replacement therapy are at increased risk for ovarian cancer
• Women whose close relatives had ovarian cancer or breast cancer are at increased risk. The younger the relative was when diagnosed, the greater the risk.
• Long-term use of oral contraceptives greatly reduces a woman’s risk of ovarian cancer
By the numbers
• Ovarian cancer is the deadliest gynecological disease and the fifth leading cause of cancer death among U.S. women
• Most women diagnosed with ovarian cancer die within five years. The five-year survival rate is 45 percent
• 81 percent of women are diagnosed after the cancer has spread beyond the ovaries
• If diagnosed before it has spread beyond the ovaries, the five-year survival rate is 94 percent
• Women who are treated by a gynecologist who specializes in oncology have a dramatically higher survival rate than those whose surgery is performed by a non-specialized gynecologist
• Compared to other cancer research, ovarian cancer research is drastically under funded, despite the fact that there have been no significant improvements in recent years
Progression of the disease
One of the keys to surviving ovarian cancer is proper diagnosis, which includes evaluating how advanced the cancer is (commonly called staging). According to experts, it is critically important that ovarian cancer patients be treated by a gynecologic oncologist, rather than a general gynecologist. Gynecological oncologists are skilled specialists at staging ovarian cancer, and their patients have on average better survival rates.
Ovarian cancer stages are:
Stage I – Cancer is limited to one or both ovaries.
Stage II – Cancer has spread to other pelvic structures.
Stage III – Cancer has spread to the abdominal lining and/or lymph nodes.
Stage IV – Cancer has metastasized to the liver or lungs.
Source: National Ovarian Cancer Alliance and the National Institutes of Health
The Minnesota Ovarian Cancer Alliance
4604 Chicago Ave. S., Minneapolis, MN 55407
The Ovarian Cancer National Alliance
National Cancer Institute
I’m Too Young For This! Cancer Foundation for Young Adults
Silent no more
Contrary to popular opinion, ovarian cancer is not the “silent disease.” 95 percent of women with ovarian cancer have one or more of the following symptoms. 43 percent of women with ovarian cancer have a combination of the first three symptoms:
Increased abdominal size
More frequent and urgent urination
Abdominal and/or pelvic pain
Feeling full after small amount of food
Shortness of breath
Loss of appetite
Pain during intercourse
Low back pain