Fred Renner and his wife Jane waited impatiently at the oncologist’s office in the fall of 2002 after a routine screening test revealed elevated prostate-specific antigen (PSA) levels. At 51, with no symptoms and a high PSA that could be attributed to many things besides cancer, the Renners were eager to hear good news from the doctor so they could make it on time to an appointment for their oldest daughter. When the doctor finally arrived in the examination room, he shared the news with the Renners: Cancer. Aggressive. Surgery. Fred and Jane were stunned.
Fred went on to Katie’s appointment, but Jane went home. She didn’t want to upset their then 17-year-old daughter. Unlike Fred, this was Jane’s first experience with cancer in an immediate family member.
“It wasn’t the fact that he had cancer that was so shocking to me,” Jane says today, especially since Fred’s cancer was found early. “But when the doctor said the cancer was very aggressive, that took me aback. I wasn’t prepared for that.” After the initial shock wore off, they both plunged into research on prostate cancer, treatments, surgeons and hospitals.
Unknown to the Renners at the time, they were only beginning their marathon relay of treatments, surgery and caregiving duties. While Jane was reeling from Fred’s diagnosis, she had an unnoticed tumor in her right breast.
About one in six couples will be diagnosed with cancer within their lifetimes, with each theoretically taking on the caregiver role and the patient role at least once. Men face a 46 percent lifetime chance of being diagnosed with cancer. Women have a slightly lower risk, at about 38 percent. For some couples, cancer will be a simultaneous experience.
Fred underwent quadruple bypass surgery only months before the prostate cancer diagnosis. Busy with caregiving duties, Jane, then 52, postponed her annual mammogram while the family dealt with Fred’s health issues. A month after Fred’s prostate surgery, Jane finally made time for her screening in December. When the technician said Jane’s scan was “suspicious,” her first thought was cancer.
Jane’s family was unconvinced the mass was cancer. But even after the needle biopsy came back negative, Jane was adamant. “I knew I had it—I knew I did. No one wanted to believe it because we already had so much happen for the laws of averages to work in that fashion.”
The more precise stereotactic core biopsy came back positive, and Jane was diagnosed with stage 3 lobular breast cancer, a cancer that originates from the cells lining the milk-producing glands called lobules. Although this type of cancer does not usually spread, invasive lobular breast cancers comprise about 10 percent of breast cancer cases and are harder to detect than ductal carcinomas.
Ironically, Jane’s reaction to her own cancer diagnosis was very different from when her husband had been diagnosed only two months earlier. “Even though it wasn’t long in calendar time until she was diagnosed, it was a long time in experience,” says Fred.
The couple quickly made plans to rotate their caregiving routines, and Fred quickly went from patient to caregiver after Jane underwent a partial mastectomy. Jane wanted to be finished with chemotherapy by the time Katie graduated from high school, so she entered a phase III clinical trial testing a drug combination given for three months instead of the traditional six months. Although she was still very weak, she made it to Katie’s graduation—a milestone in her recovery. “The walk from the parking lot to the graduation was difficult, but sitting through graduation was pure joy,” says Jane.
“Things became more difficult after the surgeries and during my treatment,” says Jane. Almost a year after Jane’s treatment and the year of their 30th wedding anniversary, Jane and Fred began marriage counseling to talk about the stress and problems that appeared after their dual cancers.
“People talk about maintaining a relationship when people have jobs and kids, and then you have this other 24-hour-a-day dominant thing,” says Fred.
Catherine Bailey, CSW, a licensed certified social worker at Hoag Cancer Center in Newport Beach, California, suggests couples seek counseling from a licensed social worker early on in the diagnosis and develop a communication plan to bring out any potential problems before they arise, because problems within a marriage and family before cancer can magnify during such a stressful time. “I often tell patients that cancer brings out the best and worst in all of us and that’s not a bad thing,” says Bailey. “They just have to be cognizant of it and understand the issues in the relationship.”
One issue that arose for Jane and Fred was different styles of caregiving. “I was with him 24-7, but when he was caring for me, he expected me to ask him for assistance and that was kind of hard,” says Jane. “But he was an excellent nurse.”
Bailey says the Renners’ situation is quite common. “Women are used to looking outside themselves and asking the questions of how they can help, whereas with men, that’s not necessarily the case,” says Bailey. “Not that they don’t care or they are unwilling, but typically their thinking is, ‘If you need something, you’ll ask me,’ and that can create conflict.”
Bailey suggests couples discuss their different styles of communication and learn how to ask for help and how to signal their partners to realize problems. When couples share a cancer experience, the emotions can be multiplied, including feelings of guilt, anger and depression. Often, a spouse may have issues of guilt when one partner has a more serious illness than the other. The caregiver may also neglect their own health or put off routine doctor visits. If the caregiver has personal health issues, it may make it more difficult for the caregiver to focus attention on the patient’s symptoms of depression, especially if they are going through their own emotional distress.
That which doesn't kill you makes you stronger. We've been through a hell of an experience together—a shared experience.
Before either cancer diagnosis, Fred’s cardiologist cautioned the Renners that a high percentage of heart bypass patients later experience depression. Fred did develop depression with the added stress of prostate cancer, and Jane’s depression came after her treatments were over. “Treatment was one of those things you checked off,” she says. “There was an expectation that I would be back to normal afterward and that wasn’t a good expectation.”
Fred, who jumped directly from patient to caregiver, also had difficulties finding his so-called new normal. “In terms of emotional changes, I think because we went right from mine into Jane’s eight months of treatment, I suspect that some of my emotional changes that could have used some attention just never got it. There just wasn’t time to deal with it. I still have the feeling that I haven’t worked it out.”
While grief is typically reserved for the death of loved ones, Bailey says cancer survivors also need time to grieve, an emotion that patients may not feel entitled to after surviving a serious illness. “Grief is a very unrecognized process with cancer survivors,” says Bailey. “They may have multiple losses, such as physical losses and lost opportunities. There are a lot of bereavement issues that a survivor faces and they have to be allowed time to realize their grief.”
The day of Jane’s mammogram, the couple had made plans for a family night at a relative’s house with their daughters Katie and then 6-year-old Anna. With a lot on her mind, Jane called Fred and told him what the mammogram possibly found.
“Take the girls and go without me,” Jane told him, wanting time alone. She sat down at the computer and began researching breast cancer. When the family came home that evening, Fred and Jane decided not to tell the girls about the mammogram until they knew it was cancer. But the next morning they told Katie about the possibility. Sitting on Katie’s bed, Jane didn’t get far into what she planned to say before Katie told her mother that she already knew. Katie had seen the breast cancer websites the night before while checking her e-mail. “I felt terrible that she knew that information overnight and I hadn’t told her,” says Jane.
Katie took a mature approach to the second diagnosis, says her mother, “but it may have affected her more than I knew.” Jane says Katie distanced herself as time went on. In the midst of choosing colleges and completing high school, Katie went to counseling, something her parents insisted upon.
“She’s quiet and serious and responsible and helpful and didn’t want to be seen as being a problem, but we knew that this had to have an effect on her,” says Fred. “That’s too much for a kid to try to shoulder and internalize at once.”
Katie, now a junior at Ohio State University, is majoring in neuroscience and is preparing for a career in research. “She wanted to get into neuroscience because she wanted to understand how she thought,” says Jane. Anna, the Renners’ younger daughter, was less affected by the couple’s cancers. “In her short little life, we had gone through three major surgeries,” says Jane. “She thought it was normal.”
After the positive biopsy, Jane wanted to tell Anna in a way that wouldn’t scare her. “Mommy is going to have a surgery like the one Daddy had,” Jane told her. “I’ll be OK, but with my cancer, I’m going to have to take some strong medicine that might make my hair fall out.” Jane asked Anna if she wanted to go wig shopping, a request to which Anna excitedly agreed. A wig specialist cut down Jane’s hair to a buzz cut and allowed Jane and Anna to try on several wigs. “Of course, Anna’s favorite was the one with flowing blonde hair.”
Participating in a program called “Kids Can Cope Too,” Anna received counseling to help her understand that she had nothing to do with her parents developing cancer and gave her the opportunity to talk about her feelings. Although she enjoyed the sessions, Anna said she was “done with cancer” after the first series was completed and didn’t express interest in continuing the sessions.
Eventually, the Renners turned their cancer experience into something positive that strengthened their family and their marriage. “That which doesn’t kill you makes you stronger,” says Fred. “We’ve been through a hell of an experience together—a shared experience.”