WATERLOO - ShanQuiesha Robinson knew what the lump meant. Her grandmother had one. Her younger sister had one.
And now, with a 3-year-old daughter at home and a few weeks shy of earning her college degree, Robinson faced the same diagnosis - breast cancer.
So she did what many other young women in her position do.
She put it off.
"I knew my family history, but I also didn't want to lose my focus with school," she said. "I figured I would get it checked out after graduation."
Finally, with only two weeks to go before graduation, Robinson went to the doctor. Forty-eight hours later her worst fears were confirmed. Robinson, 25, became one of about 14,000 new cases of breast cancer diagnosed each year in women under 40.
Cancer in the young
Dr. Joginder Singh, a hematologist and oncologist with Cedar Valley Medical Specialists, says about 25 percent of all breast cancer diagnoses are in women under the age of 50, however the occurrence rate drops to 5 percent in women under 40. According to an article published on WebMD, incidences of breast cancer in women under 30 are 1 in 2,500. In women up to age 40, the risk increases to about 1 in 250, and for women in their 40s, the rate jumps to 1 in 70. The chance increases to 1 in 8 over a lifetime.
Singh said while the chance of occurrence is less, cancer in younger women is usually much more aggressive. The mortality rate is also greater.
"If a woman is diagnosed at 80, it is likely the cancer probably started about 20 years ago," Singh said. "At 25, the cancer probably started only a year or two ago."
It isn't just the type of cancer that sets younger women apart. Younger women often face greater issues when dealing with treatment options and disease management, Singh said. Younger women like Robinson often choose a bilateral mastectomy, when sometimes a less drastic lumpectomy would have solved the problem.
Robinson, with her family history, said having both breasts removed was a natural choice. She doesn't regret the decision, but is upset she will never breast-feed any future children.
The decision to remove both breasts didn't come as quickly for Paula Pecenka, who was diagnosed in July 2005. She was 25.
Pecenka originally opted for a lumpectomy followed by 20 weeks of chemotherapy. But when doctors found another lump in January 2006, she, too, elected to have both breasts removed.
"I originally chose the lumpectomy because I knew my cancer wasn't anything genetic," Pecenka said. "But there is always that thought in the back of your mind. So when I found the second lump, I just had it done and I have been happy ever since. … But even after finding the second one, my oncologist thought I was being hasty."
Younger women also face more lasting side affects, especially when it comes to planning a family. Singh said women must consider that fact when weighing treatment options. He recommends seeking two, three or even four referrals before settling on a treatment plan.
Raising a family
Fighting cancer is a full-time job.
Between treatments and recovery, it is hard to focus time or energy on anything but oneself.
But young women often must perform a difficult balancing act.
Pecenka's son was only 2 years old when she was diagnosed.
"I am so thankful to have my son, but I still missed so much. I couldn't lift him or help with him for over a year," she said.
Her husband had to work during her treatment to support the family. But Pecenka counts herself as lucky. Her sister, who lives in Florida, moved back to Iowa and stayed with the family during her treatment.
"She was a godsend. And my mom and dad lived right here, too," she said. "You will always have friends, but at 25, they don't want to just sit around with you. They have energy. It really helped me to have a husband and good family."
Robinson, who only recently began her chemotherapy, faces a similar situation, but without a partner. She and her daughter, Mia, will rely heavily on Robinson's mother, Cathy Ketton. The two moved in with Ketton shortly after Robinson was diagnosed.
For Ketton, the scenario is all too common. Ketton's younger daughter, ShanQuNiisha Robinson, and her two children lived with her while ShanQuNiisha battled the same disease. "I thought it would be easier with Shae since I had just done this," Robinson said. "But, she is still my baby, and it is still difficult."
Cressie Golden, who was diagnosed at 42, feels for those who fight the disease while raising a young family. While the Robinsons and Pecenka had their family's support, not everyone Golden met has been so lucky. One young woman, a single mother, had to work to support a child during treatment.
"When I went through it my son was 15 and my daughter was 16. They were old enough to help with the housework and meals," she said. "After my third or fourth treatment, if I got up to take a shower, I would have to take a two hour nap. I couldn't imagine the responsibility of a small child."
Many young women facing breast cancer in their 20s have not yet started a family, and some treatments can affect fertility.
"At 25, I want more children," ShanQuiesha Robinson said. "I have my daughter, but what about those women who haven't had children and won't be able to experience that?"
There are many hard days ahead of ShanQuiesha Robinson, who is only a few weeks into her treatments.
"I just take it as it comes. I try to explain to my daughter that mommy isn't feeling good today, and she will go off and play with my mom or someone else in the house," she said. "She says her prayers that I will feel good and that mommy will have the strength to play with her today."
Changing body images
Cancer can wreak havoc on one's body at any age.
Women who undergo a mastectomy can adapt to their new body or face more surgery to reconstruct the missing breast.
Hair loss is a near certainty during chemotherapy. Some choose the natural look. Others cover their balding heads with bandanas, hats or wigs.
Even though these changes are expected they can be difficult to deal with.
ShanQuiesha Robinson knew she would begin to lose her hair, but when patches began to fall out during last weekend's Annual Conference for Young Women Affected by Breast Cancer in Jacksonville, Fla., she was not quite ready to accept the change.
"It was a shock, but there you would see these young women wearing their natural heads without anything. It was inspiring and makes them look strong," she said. "But I still don't know what to do. I bought a wig while I was there, and I'm still covering my hair. I just don't think I am that comfortable yet."
Pecenka also struggled with her body image while undergoing chemotherapy and even now as she continues taking Tamoxifin as part of her treatment.
"You really lose control of your body when you have breast cancer. It almost sends you into a premenopausal state. You are on medications that don't really allow you to work out, so your body gets bigger," she said. "Body image is a big deal and can lead to intimacy issues, too."
At 42, Golden was still considered young when she was diagnosed. However, her children were teens and she had no desire for a bigger family. Now, at 47, she sees clearly how different the experience can be for a 20-something.
Golden also attended last weekend's survivors' conference in Florida. She found the experience "extreme."
"It was extremely sad, extremely fun and extremely enlightening," she said.
Golden saw young women walking around, no hair on their heads and hand-in-hand with their husbands. She heard stories from young mothers facing the possibility of dying before their children go to kindergarten.
"This woman was so young and vivacious. She was in the next class I went to, about getting your groove back, and was laughing and having a great time even though she was only given 24 months to live," Golden said. "She was living life to the hilt."
She also heard stories of hope; of women living with stage 4 breast cancer for four years thanks to new medications.
ShanQuiesha Robinson saw the same thing.
"I met people who were diagnosed even younger than me and my sister. Sixteen was the youngest, but she is 30 now. I met a girl who was 19 when she was diagnosed and 22," she said. "We spent time together each day of the conference, and she gave me lots of advice as I go through my treatments."
Now that they have returned to the Cedar Valley these young survivors hope to turn their excitement into something tangible for women facing the same day-to-day struggles. Golden and Pecenka, both members of the Beyond Pink Team, and Robinson, who plans to join the group, hope to use their newfound knowledge and enthusiasm to organize events to support younger women dealing with the cancer or its aftermath.
A meet and mingle for young cancer survivors is already scheduled for April, and Robinson is talking about a calendar featuring young cancer survivors.
"What these young women need most of all is just support," Golden said. "They need someone who has been there and understands so they have someone to turn to. Sometimes, you can't turn to your family because you need to be strong for them. This is why it is so important to have young people talking with other young survivors."
Contact Emily Christensen at (319) 291-1570 or firstname.lastname@example.org.