Nurse practitioner Karen Gutierrez knows the confusion that can set in when someone has been told he or she has breast cancer. She’s counseled hundreds of people in such a circumstance, and is a breast cancer survivor herself.
Kelli Cravey understands, too. As a teenager, she witnessed her mother fight a four-year battle with triple-negative breast cancer, the most virulent form of the disease. She opted to undergo a double mastectomy earlier this year, after she learned she carries the BRCA 1 gene mutation and was at high risk of developing breast cancer.
“That first month is a roller coaster,” Gutierrez said. “You get the diagnosis. You’re not sure who to tell. You want to find out first what your dealing with: How big is the tumor? What kind is it? All that comes through the early examinations.’”
Dr. Ronald L. Bauer, head of Breast Care of Western New York, performed surgeries for Gutierrez and Cravey. Gutierrez went to work for him after her surgery five years ago. She also works as a breast cancer educator at Sisters Hospital, a community comprehensive cancer center where Bauer performs the vast majority of his surgeries. His practice is owned by Roswell Park Cancer Institute. He also is affiliated with Kaleida Health.
All three talked about the differences in breast cancer and approaches to treatment when someone asks, “I have breast cancer? Now what?”
“So many things are happening during this time, so many decisions to make. You’ve got to come armed with knowledge and support,” said Cravey, senior director of community events for the Amherst-based Eastern Division of the American Cancer Society.
1. Know you are not alone Reactions to a breast cancer diagnosis vary, but know that you will start on a road many others have traveled:
• One in eight women – and about one in 1,000 men – will develop invasive breast cancer at some point during their lifetime, according to the American Cancer Society.
• More than 230,000 American women will be diagnosed with breast cancer this year.
• Death rates from breast cancer declined during the last 25 years, most likely because of earlier detection through screening, increased awareness and improved treatment. Today, there are more than 2.8 million breast cancer survivors in the U.S.
Denial of those statistics – in the forms of avoiding treatment or preventive tests like mammograms – or launching headlong online to “Dr. Google” can become fruitless, the three experts said.
Bauer recommended that patients with questions start with the American Cancer Society (cancer.org/cancer/breastcancer) or WebMD (webmd.com/breast-cancer/guide), or read portions of “Susan Love’s Breast Book” that pertain to their particular diagnosis.
He also stressed the bottom line: “Most people with breast cancer these days do very well” with surgery, recovery and, if needed, breast reconstruction.
2. Understand your pathology Many will offer opinions on this challenging journey but you are responsible for the decision-making. The more you learn, and understand, the better. “Breast cancer is like labor,” Gutierrez said. “When you’re about to have a baby, every woman comes out from the woodwork and says, ‘When I had my baby...’ You get the woman whose labor lasted 36 hours and the one who walked in and the baby came out and she went back home. Everybody has their own stories. Breast cancer is never the same. It isn’t cookbook. Treatment is really tailored. I let people know that everyone’s road is not the same.”
The breadth of the disease can be confusing, Bauer said. There are several types. Invasive ductal cancer, by far the most common, starts in the breast duct. Invasive lobular cancer starts in the breast tissue and makes up about 10 percent of cases. Inflammatory breast cancer, a subtype of ductal cancer in which tumor cells clog capillaries just under the skin and give the breast a red blush, is among the most concerning. There are several more rare varieties.
Breast cancer can be discovered at different stages:
• Stage 1 – A tumor 2 centimeters or less in size and lymph nodes under the arm nearest the breast test negative for cancer cells.
• Stage 2 – A tumor 2 to 5 centimeters or lymph nodes are positive.
• Stage 3 – A lot of matted nodes or a tumor larger than 5 centimeters.
• Stage 4 – Cancer that has spread to other parts of the body.
“The treatment is sometimes dictated by the type but often by the stage,” Bauer said. Many smaller tumors can be removed through a surgical procedure called a lumpectomy, without removing all breast tissue as in the case with a mastectomy. Radiation likely will be needed in such cases but often not chemotherapy.
3. Slow down and focus “Women are super strong, but we’re strongest when we know the plan,” Gutierrez said, “so that time from abnormal mammogram to knowing what we’re going to do, that’s when women have the most stress because they’re not able to be in charge. The ambiguity is stress-provoking. So as soon as you can develop a plan and have a team with you helping your make those good decisions, that’s when the stress is better.”
During her diagnosis, treatment and recovery, Gutierrez reached out to others as she underwent a mastectomy and reconstructive surgery of her right breast.
Make sure you are comfortable with your medical team, she advised. These generally include a breast surgeon, patient navigator like herself and a medical oncologist. The oncologist will interpret a pathology report after surgery and go over options about follow-up treatment, which often includes five years of estrogen-blocking medication. A radiology therapist often becomes part of the team and in the case of a mastectomy, a plastic reconstructive surgeon. A mental health counselor can help you stay focused and grounded.
It’s also perfectly acceptable to seek a second opinion, which usually is covered by health insurance, Gutierrez said. “It helps you recognize that your doctor has a good game plan or that someone has a different option,” she said. “Then you choose who you’re most comfortable with.”
It’s a good idea to take someone with you to doctors appointments. When Cravey’s mother, Debbie Kaberle, was diagnosed, her father would tape-record doctor visits so the couple could listen to them later at home, as tensions eased. They missed more than they thought, and misunderstood some things.
4. Give it time “I let people know that these are cancers that develop over years,” Gutierrez said. They take time, attention and patience to address.
Attitude and endurance count. “I’m a glass half-full person,” said Gutierrez, who needed chemotherapy after her mastectomy when her pathology report suggested some cancer cells may have escaped her breast. “I had this whole list for every day of my chemo with something positive,” she said. “You start with, ‘This is killing any cancer cells that might be floating around’ to ‘I saved $17 for not having to buy razor heads because I didn’t need to shave,’ and ‘I can go four months on a travel size bottle of shampoo.’”
“You’re given this different lens to look at life,” said Cravey. Life can be lived in the moment, she said, and in the quiet spaces, thankfulness for things that really, really matter can stir you to the core.
As the days, weeks and years improve, take care of yourself, Bauer advised. Continue with treatment and follow-up checkups, eat right and exercise. “I tell people, ‘Whatever is good for your heart is good for your breasts.’ Fatty tissue produces estrogen and estrogen causes breast cancer. So anything you can do to stay thin will help reduce your risk.”
5. Be yourself Cravey graduated from Michigan State University with a communications degree several years after her mother died in 1993 and went to work on “The Tonight Show” and “Dick Clark Productions” in Hollywood. In the end, an opportunity to help raise money and awareness to address all forms of cancer mattered more. She and her family moved to Eden almost a decade ago when her husband, Adam, then a Coast Guardsman, was transferred to the Buffalo sector. In various Cancer Society roles, she has watched some breast cancer survivors cast their passions publicly in the continuing fight to eradicate all forms of the disease. But she also understands that some people want to handle treatment and its aftermath more privately.
All roads are appropriate, she said, though she believes the goal for all remains the same.
“I tell my daughter in her lifetime, because of what we’re doing, pink ribbons are going to be for pigtails and for prom dresses.”
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