When Jennifer Kughn shares her breast cancer survival story, you instantly feel the palpable anguish, fear and panic she experienced in her early forties – from her initial mammogram to a double mastectomy with reconstruction to a rare chest infection to more surgeries and painful recoveries.
You can’t help wondering, “How did she handle all this?”
It’s a one-word answer.
“I went from life being somewhat normal to being turned upside down and having a part of my body amputated,” said Kughn, 47, a wife and mother of three children who teaches at East Hill Christian School.
“In addition to the physical trauma I was enduring, I was dealing with the emotional and psychological trauma, too, which was harder,” she said. “Looking back at my journey, I see the impact of the support I had around me.”
That support was multilayered.
“Outside of my family, I was blessed that my reconstructive surgeon happened to be a close friend and was a huge source of encouragement and comfort for me,” Kughn said. “I also had a close friend from church who was diagnosed right before me with breast cancer, and she and I were there for each other in our suffering and struggles.
“With these two women walking close beside me in my journey, we kept discussing how important it is to have a strong support group in the journey that can relate
to the pain and struggles physically, mentally and emotionally,” Kughn said. “We ended up starting a support group called Table Talk: Journey Through the Unknown. We first started it in person in Pensacola, but COVID forced us to go virtual, which opened doors to meet with women across the country who are battling breast cancer or are survivors.”
When fighting breast cancer, support is an essential weapon to battle decimation of the human spirit, said Dr. Pat Dial, an oncologist practicing at HCA Florida West.
“I’ve been doing this for 38 years, and I’ve seen the devastation,” said Dial, Fellow of the American College of Surgeons/general surgery/surgical oncology, and clinical assistant professor of surgery at the University of Central Florida.
Currently, in the United States, the risk of developing breast cancer is one in eight or around 13%, and most women who develop breast cancer do not have a known family history of breast cancer or significant risk factors, Dial said.
“As a result, the diagnosis of breast cancer can come as a devastating surprise, and although breast cancer is a physical diagnosis, the emotional turmoil that results can cause significant psychological effects,” Dial said.
“I recently had a patient with a known diagnosis of breast cancer on who we performed a lumpectomy as breast conservation surgery,” he said. “When she returned to the office, the tumor was noted on the pathology report as showing there was still cancer in the breast. My surgical recommendation changed from lumpectomy to bilateral mastectomy. I could immediately see the change in her demeanor from calm to anxiety and fear.”
A recent study shows a substantial number of patients experience clinically significant symptoms of distress after being diagnosed with breast cancer – including depression, anxiety, distress and posttraumatic stress disorder, or PTSD, Dial said.
Some approximate statistics Dial shared:
34% of breast cancer patients experience anxiety manifested as restlessness, irritability, inability to concentrate, fatigue or difficulty sleeping.
38% show symptoms of clinical depression including frequent crying, losing interest in previously enjoyable activities, irritability or restlessness, isolation from others, difficulty concentrating, lack of energy and finally thoughts of self-harm or suicide.
31% of patients receiving a breast cancer diagnosis experience PTSD. This includes nightmares, flashbacks, self-destructive behavior, persistent negative emotions like fear, anger and guilt, and finally feelings of alienation or detachment.
The good news is that there are support options, Dial said.
Across the board, oncology medical professionals stress the utmost importance of support, whether it’s in person at a support group or communicating with patients undergoing treatment and breast cancer survivors via Zoom or social media, Dial said.
Baptist Cancer Support Services offers a monthly support group for its patients and their families to connect with others who have survived or who are currently going through treatment. The group includes any cancer diagnosis, as well as stage of treatment, from those who are newly diagnosed and looking to connect to those who have transitioned to survivor to those wanting to encourage others going through their journey.
“Baptist Cancer Institute’s support programs help our patients feel better and encourage hope and strength in their healing journey,” said Kelly Ward, LCSW, breast health navigator at the institute.
“We want our patients to know they are not alone,” Ward said. “During our support groups, we talk about our patients’ feelings and work through them so that they can heal their minds, body and spirit while managing their cancer diagnosis and treatment.”
Dr. Jada Leahy with The Surgery Group said a support group is a lifeline.
“Women who get support do better, have better outcomes and a better quality of life,” said Leahy, a board-certified general surgeon specializing in many areas including breast surgery. “If I have a patient who does not have a support group, I work with other professionals to make sure she gets one.”
She explained the benefits of a group like this.
“When you attend a support group, you meet women in different stages of breast cancer, you get to ask questions such as – How do you tell your children you have cancer? When is my hair going to fall out? How do you talk about intimacy with your spouse or partner? I can never tell my patients what it’s like to go through chemo, but these women can.”
But Leahy said there is something she can do, something she always does.
“I am a hugger, and I cry with them,” she said. “There is so much value in telling a patient after her visit, ‘I care about you. I am here for you.’”
Breast cancer patients may feel alone, but they are not, explained Jessica Hornedo, BSN, RN, breast cancer navigator at Ascension Sacred Heart/Ann L. Baroco Center for Breast Health and Mammography.
Nurse navigators are with breast cancer patients throughout their journey – empowering, advocating, educating, guiding, supporting, coordinating treatments and much more.
“As a nurse navigator, I treat every patient as an individual, and I am with them each step of the way,” Hornedo said. “I am with a patient from the mammography diagnosis to the oncologist to treatment to support, all the way to survivorship.”
Witnessing how breast cancer affects more than just the patients, this expansive care and outreach extend to caregivers, Hornedo said.
“We absolutely reach out to caregivers and let them know they are not alone,” she said. “As a caregiver, you can feel alone, and the stress can affect you physically and mentally. We can always hook them up with support groups and social workers.”
Many resources exist.
Thousands of caregiver support groups exist across the country organized by hospitals, breast health clinics/centers, senior centers, churches and disease-specific organizations such as The American Cancer Society.
The teams of medical professionals, including the ever-essential nurse navigators, are “always there to help those diagnosed with breast cancer,” Hornedo said.
“We help everyone we come in contact with.”
OUTPOURING OF SUPPORT
American Cancer Society/Reach to Recovery: This support program helps people cope with their breast cancer experience – as early as the first possibility of a diagnosis and continuing for as long as breast cancer remains a personal concern to them. Through its website and mobile app, you can create an online profile and match with a volunteer who has experienced a similar type of breast cancer, stage and treatment. You can also choose how you want to connect with a volunteer – through online chat, a phone call or exchanging messages. To join Reach to Recovery and create a profile, visit reach.cancer.org or download the mobile Reach to Recovery app.
Ann L. Baroco Center for Breast Health and Mammography/Breast Cancer Support: Sacred Heart Oncology offers a free cancer support group for current or former cancer patients and their family members. It offers life-changing encouragement, support and hope, regardless of your specific cancer, phase of life or religious affiliations. Meetings are 5:30 p.m. to 7 p.m., the second and fourth Thursdays each month. Sacred Heart Medical Oncology Building, 27 E. Mack Bayou Loop, Santa Rosa Beach. For more information, contact Chaplain Jeff Carlton at 205-542-6212.
Baptist Cancer Institute/Baptist Health Care: The institute offers monthly support groups for its patients and their families to gather and connect with other individuals who have survived or who are currently going through treatment. It has three locations – Kugelman Cancer Center at Baptist Hospital, Ciano Cancer Center at Gulf Breeze Hospital and Baptist Medical Park/Nine Mile. For more information about Baptist Cancer Institute, visit ebaptisthealthcare.org or call 850-469-2222.
Pensacola Breast Cancer Association: This non-profit, all-volunteer organization assists the indigent and under-insured. For support information, contact PBCA at 850-780-0468 or pensacolabreastcancerassociation.org.
Susan G. Komen Breast Care Helpline: A national effort, the helpline provides information about breast health, breast cancer, local and national resources and information about clinical trials. Call the Breast Care Hotline, 877-465-6636 (option 1).
Table Talk: Journey Through the Unknown: The Pensacola-based support group meets monthly via Zoom, 7:30-8:30 p.m. A Zoom invitation is sent before each meeting. Everyone is welcome. To join, email or call to be added to the group. Contacts: Jennifer Kughn, email@example.com; 850-532-0122; Dr. Lusharon Wiley, firstname.lastname@example.org; 850-748-7641.