|CANCER & TREATMENTS FOR CANCER CENTER PATIENTS PREVENTION & RISK ASSESSMENT CLINICAL TRIALS & RESEARCH LIVING WITH CANCER|
A Shared Journey
Carol Riddle, an English professor and mother of two sons, wasn't concerned when she was toldher yearly mammogram needed a follow up. After all, there was no family history of breast cancer."I'm afraid I didn't move as quickly as I might have," she recalls in describing her initial diagnosis andtreatment, which took place near her home in Mt. Pleasant, MI. After her initial mammogram in February 2000, three months transpired as she underwent follow-up testing to confirm a diagnosis and to reschedule surgery.
In May, she entered the hospital anticipating a lumpectomy and the removal of lymph nodes tocheck for the spread of the disease."That wasn't what happened. I awoke to learn that the surgeon had performed a wide area excision without removing any lymph nodes." She soon learned that the surgery had notsucceeded in removing all of the cancer, and she would need to schedule a mastectomy.
"A friend had been urging me to go to U-M for treatment all along," recalls Riddle. "At that point, I decided to take her advice." Follow-up treatment at the Cancer Center involved a mastectomy to remove the remaining cancer and all lymph nodes. The decision was made to coordinate that procedure with a hysterectomy, which had been previously indicated for Riddle. The two surgeries, completed back-to-back on the same day in June, presented a challenge for both Riddle and her U-M surgical team. "I was glad to have them both over in one day, even though it meant a tougher recovery," she recalls. Four rounds of chemotherapy, completed over three months, concluded Riddle's protocol.
As Riddle was finishing her cancer treatment, her sister Susan Weston was about to begin hers.Weston's doctor saw something suspicious in her annual mammogram, too. Based on her sister'sexperience, she moved quickly. "I went directly to Michigan," she says, "where three biopsies in myright breast were all malignant." She was immediately scheduled for surgery.
"I, too, had a mastectomy," continues Weston,"but unlike my sister, my follow-up was six-and-a- half weeks of radiation. "Weston also chose to have breast reconstruction surgery, a two-and-a-half year process she began later that year.
At the close of 2003, as Weston was beginning her breast reconstruction process, the family was plunged into battle with the disease a third time. Mother Rosemary Buck received word that her annual mammogram needed follow-up. "We really had to work hard to convince Mom that this was serious," Weston remembers. "Even after a biopsy confirmed cancer, she still wanted to delay surgery for a month or two for her planned vacation."
"I was reluctant," acknowledges Buck, "but of course, now I'm glad the girls and my surgeon persuaded me."A lumpectomy was performed in December 2003. There was no lymph node involvement, so Buck's surgery was followed by radiation. Like Riddle, she did not pursue reconstruction, electing to wear a prosthesis instead. "I recovered quickly, and experienced very little pain during the whole process," says Buck, now 78. "And I feel great now."
Three roads, one destination
"In my 30 years in breast oncology, this is the first time I've encountered three patients fromthe same family," says breast oncologist and director of the U-M Cancer Center Max Wicha,M.D.,who treated Riddle, Weston and Buck. "Together, they demonstrate just how many options are availableto breast cancer patients today."
Among the three, they faced pre- and post-menopausal diagnosis, lumpectomy, mastectomy, radiation, chemotherapy, reconstructive surgery and prostheses. "Their story is a powerful illustrationthat no two cases are alike," says Wicha,"even when they happen to occur in the same family." Furtherdifferences emerge when each woman reflects on how she coped with her diagnosis. Clearly, managingcancer is much more than making treatment decisions.
"Cancer really highlighted how different the three of us are," says Carol Riddle. Although delays characterizedthe early phase of Riddle's diagnosis and treatment, "once I got the right advice from my team at U-M, I didn't want towait, and I was anxious to move quickly. I'm a teacher so it's natural for me to ask lots of questions."
Because of Riddle's experience, many of Susan Weston's questions were answered before they wereasked. "I knew I would go to U-M for treatment. I was impressed that in my first clinic visit, I meteveryone who would be involved in taking care of me." She also visited the Patient EducationResource Center to arm herself with more information. "I wanted to be involved in my treatment."
Although mother Rosemary Buck had been a source of support for both daughters during theircancer journeys, when she herself received a cancer diagnosis, her approach was very different. "She'snot one to ask questions of her doctor," says Weston. "She just wants to be told what to do, andget on with doing it."
"That's true," Buck admits. "I was raised to respect authority figures like doctors. But I did read all of theinformation the girls passed on to me, and I've since shared that same information with otherwomen diagnosed with cancer."
"Mom's experience and mine taught me the importance of having another set of ears in theroom during appointments," Riddle says. "It's overwhelming for the patient, so having someoneelse there to listen is something I recommend to everyone."
When it came to sharing their experience with others, the differences between motherand daughters was even more pronounced. Buck was reluctant to tell anyone, even close friends,that she was being treated for cancer. "I guess it's a generational thing. I wasn't brought up to sharepersonal things. And I just didn't see a reason to talk about it. The girls urged me to share with othersand not to keep it a secret, but I still kept it pretty much to myself - although I guess I'm talking aboutit now!"
"My mom is very private about her personal life," says Riddle. "I look at it differently. Again, asa teacher, I know the power of information. It was natural for me to research the disease, and tobe open about discussing it. I went nearly two years without a prosthetic, teaching a full load ofclasses. If someone noticed I had only one breast and asked about it, I saw it as a 'teaching moment.'
It's important that people see that you can survive cancer."
Weston agrees. "We urged Mother to share with her friends. She needed support, and theyneeded to understand why she didn't feel well. I think lots of women feel like my mom did -that it's something to be hidden. But it's nothing to be ashamed of. We did nothing to deserve cancer."
That openness led Weston to share her story at community events, in the press, and one-on-one with other patients. Soon after completing treatment, Weston joined the Cancer Center's Peer Counseling Program. "It's so helpful to share," she says. "Not just for the newly diagnosed women I've met, but for me, too. It feels like I'm doing something with the second chance I've been given."
Experts agree that finding constructive ways to express emotions is a sound strategy for cancer patients, helping to reduce uncertainty and distress and cultivate a healthy outlook. But as Buck's experience illustrates, one's upbringing can make it challenging to talk about illness. Patient educators from the National Cancer Institute suggest patients try keeping a journal as a way of "sharing without talking." Writing about feelings is a good way to sort through them and begin to deal with them.
Looking for the next generation
Even after pursuing their individualized courses of treatment and coming to terms with the emotional aspects of the disease, a larger question troubled the women: did a shared genetic mutation cause their cancer and threaten others in the family? Buck's family includes two other daughters as well as 13 grandchildren and 18 great-grandchildren - 13 of whom are girls. "We needed to look out for them by looking for a link between our cancers," says Weston, who made the decision to undergo genetic testing at the Cancer Center's Breast & Ovarian Cancer Risk Evaluation Program.
Weston's test did not reveal a mutation in the two genes implicated in breast cancer, BRCA1 and BRCA2, leaving the family with no clear cause for the three-time occurrence. "They're not sure why this happened," Weston states. "There may be another gene involved that they haven't identified yet."
There was one other step Buck and her daughters took on behalf of others. Independently, each chose to participate in clinical research studies. Buck participated in a study about treatment-related hot flashes. Weston helped researchers evaluate different mammography screening techniques. And Riddle was part of two trials: a study to evaluate the injection of nuclear substances to reveal cancerous activity in lymph nodes, and research on cancer-related mental and physical fatigue.
Buck's oldest and youngest daughters are currently participating in research, too. Both are enrolled inThe Sister Study. Sponsored by the National Institute of Environmental Health Sciences, the study is theonly long term research on women 35-74 who have a sister with breast cancer. It's goal is to learn howenvironment and genes affect the chances of getting the disease. "We all believe that the morewe can help others, the more we want to," says Weston. "It's a way of making something positive outof our situations."
Carol Riddle revealed another, more personal reason to participate in clinical trials. "Cancer can be a lonely path, even when your family is right there with you. But it never failed - every time I felt lost in the crowd, my research study coordinator would be there to check in on me.That made me feel like I was getting an even greater level of care."
Stronger Family Ties
Looking back, all three women acknowledge their experiences with cancer united them as neverbefore."Susan and I are closer now than ever," says Riddle. "That's true," confirms Weston,"when Igot my diagnosis, the first call I made was to Carol." As a mother, Buck was used to the role ofcomforter. But roles reversed when she was diagnosed. "I had to look to my daughters as a sourceof strength. They never let me down. They could put their arms around me and make me feel protected."
In the end, after each followed a different path, all arrived at the same destination."We look outfor each other now," says Weston proudly. "We're survivors, and survivors stick together."