Although the causes of breast cancer are not fully known, extensive research has identified a number of factors that increase one’s chances of getting the disease. For example, it’s been found that a woman’s chance of getting breast cancer increases with age. Also, a woman whose mother, sister or daughter had breast cancer has an increased risk.
So the odds of a 28-year-old woman with no family history to actually develop breast cancer seem infinitesimal. But since November of 2011, nothing about the life of Ashley Karnes has been conventional.
Karnes, a licensed practical nurse at the Fayette County Memorial Hospital Women’s Wellness Center, recently sat down with the Record-Herald to tell her story of pain, extreme courage and hope.
“I had my daughter, Brynlee, in November of 2010, nursed her for an entire year and then stopped nursing her in November of 2011,” said Karnes, a Greenfield native. “Shortly after, I began to have a dull ache in my breast that just kind of started to come and go. It wasn’t every day and it wasn’t excruciating pain, so I thought that my body was changing back from breast feeding. I let it go because I thought it was normal.”
However, in March 2012, the dull ache returned. While in the shower one day, Karnes said she looked down to see that her right nipple was retracted.
“Being a nurse, I know that’s not normal,” she said. “So I look at the mirror and I have dimpling in the right side of my breast. Of course, the first thing I do is get on Google and check it out….and everything comes up ‘breast cancer, breast cancer.’ But in the back of my mind, I’m thinking, ‘I’m 28-years-old, there’s no way this can be it. It’s probably just from breast feeding, I have no family history.’”
At that time, Karnes had only been at Fayette County Memorial Hospital (FCMH) for about four months. She decided to meet with a nurse practitioner at FCMH.
“She told me that she didn’t feel anything abnormal, but she didn’t like the way it looked,” said Karnes. “So she sent me for an ultrasound on both breasts. At that time, nothing was found in the right breast. I had two cysts in the left breast. A doctor also took a look and didn’t feel anything, but decided to send me up to OhioHealth. I saw a physician/specialist up there and the first thing she said to me was, ‘You’re too young. I don’t think it’s cancer, you’re 28, but I’ve never seen anything like this in my life so I’m just going to go ahead and send you for an MRI.’ So I had an MRI done that exact same day and it came back normal, nothing was there. At the time I was kind of relieved.”
Relief quickly turned to devastation. Following a blind biopsy, Karnes received a call on April 30 to inform her it came back positive for breast cancer.
“Because all of my imaging had come back normal, I thought I wouldn’t hear those words,” Karnes said. “But when you hear those initial words that you have cancer, your mind just goes in a million different places. You start thinking about the worst case scenario and about what you need to do.”
When speaking with Karnes, it doesn’t take long to determine what a remarkably strong and courageous woman she is, and her response to her diagnosis was emblematic of these traits.
“At that point, my focus was I needed to stay positive and strong to be there for my daughter who needs her mommy for a long, long, long time,” she said.
Following her diagnosis, the next step was testing to determine what type of breast cancer it was, said Karnes. She was then diagnosed with “estrogen progesterone” positive breast cancer, which means the cancer cells grow in response to the hormones estrogen and progesterone.
“There are three grades and I was diagnosed with Grade 3, which is the most aggressive form,” she said. “I didn’t actually know what stage I had until I had my mastectomy because they didn’t know how large the tumor was. After everything was said and done, I was a Stage 3, Grade 3. My physician wasn’t sure where to send me to because I was her youngest patient. She hadn’t seen a case like mine and she wanted to make sure I was getting the best treatment, so she wanted to take my case to what they call a tumor board. A group of physicians come to discuss the case to see what is your best treatment for your best scenario.”
Based on its reputation for the full continuum of breast cancer care, Karnes sought out an appointment with a surgical oncologist at the Stefanie Spielman Comprehensive Breast Center. Another scan showed five of 11 lymph nodes removed from Karnes were positive for breast cancer.
“I underwent 16 rounds of chemo…I did 12 rounds every Friday for 12 weeks, and then every two weeks I did a very harsh chemotherapy that they call the ‘Red Devil’ (Adriamycin/Cytoxin). They call it that because it’s so harsh and it’s actually red. The max dose in a lifetime is four doses because it’s so harsh. So I had four treatments of those,” Karnes said.
With these treatments, Karnes lost her hair by the third treatment of Taxol, a medication that interferes with the growth of cancer cells and slows their growth and spread in the body. Karnes’s response to the latest setback was representative of her positivity and ability to still possess a sense of humor.
“When I started shedding my hair, I just thought that this is something I can control. So I called all my friends and I said, ‘Let’s just have a head shaving party.’ I called my hairdresser up, we all went into the salon, we dyed my hair pink and blue, did crazy cuts…I had a Mohawk,” Karnes said, laughing while recalling the impromptu head shaving party. “We just had fun with it because at this point, cancer was pretty much controlling my life at that time. So I thought that with this one thing, I can control it and do it on my own time.”
Karnes wore a specialized wig from the Stefanie Spielman center for about a year.
“My biggest fear was my daughter wouldn’t recognize who I was,” she said. “I wanted to be as normal as possible for her at a young age to recognize me. They did such a great job with it. If you didn’t know it was a wig, you wouldn’t be able to tell. It was that good.”
On Nov. 27, 2012, Karnes chose to have a bilateral mastectomy, which is the surgical removal of both breasts to treat or prevent breast cancer.
“I had to have the right breast removed because they didn’t know how large the tumor was,” she said. “It was my choice to do the left breast because at the time, I just wanted to do whatever possible I could to prevent. I did a bilateral in order to lower my risk.”
Of course, such a surgery not only has a physical impact but a difficult psychological one as well.
“For a woman, it’s hard to lose feminine parts. To look at yourself in the mirror and see you’re completely flat-chested with abnormal scars….it’s difficult,” Karnes said. “I did have expanders placed at the time of the mastectomy and went every week to have the expanders injected with saline. I did that for roughly six weeks. It stretches out your skin and creates a spot to go in later and put an implant in. But even with that, it stretches all of your back muscles and pulls everything forward, so you experience nerve pain. It’s very painful and your chest is hard as a rock during that time.”
Karnes underwent radiation treatments every day, Monday through Friday, for 25 treatments. Eleven more lymph nodes were removed during her mastectomy and all came back negative.
“I was considered cancer-free, or what they call in remission, on March 19th, 2013,” said Karnes. “That is when I finished all of my treatments and the margins on my tumor were all clear. I was started on an oral medication, Tamoxifen, 20 milligrams daily to suppress the remaining estrogen that was in my body. I took that daily for four-and-a-half years.”
For those four-and-a-half years, Karnes routinely did followup visits with her medical oncologist, surgical oncologist, and with Dr. Cynthia Morris, a gynecologist and medical director of the FCMH Women’s Wellness Center. These visits included imaging, bone scans and MRIs. Every appointment continuously checked out fine for Karnes – there was no sign of the cancer returning.
Everything changed in April of this year.
“It was the week of Easter…I was at home and felt a dull ache in my left breast,” Karnes said. “It didn’t feel right. Then I felt a knot. I did an MRI here (FCMH) and sure enough, that spot popped up. I contacted OSU and let them know what was going on.”
An MRI at the Spielman center revealed the same spot, as well as one more centrally located on her left breast and a spot on her sternum.
“I went back up there, had a mammogram and they thought for sure it was fat necrosis (which is damage to the fatty tissue that can occur following a needle biopsy, breast surgery or radiotherapy to the breast),” Karnes said. “I had a biopsy done of the spot that we found and that came back as chronic inflammation. For the one on the sternum, I had a bone scan and a full body MRI. I was being an advocate for myself and just asked if I could do a PET scan.”
On May 3, the PET scan revealed that cancer was found in her sternum, left hip, spine, sacrum and a spot on her breast that the doctors were still questioning. The cancer had metastasized and was now considered Stage 4, which is terminal.
“So at this point, I’m an emotional wreck,” said Karnes. “I’m 33-years-old and almost five years of being in remission, and many say that once you make it to the five-year mark, you’re pretty much clear. But unfortunately cancer can come back at any time, even if you’re at Stage 1 or Stage 2. I thought I had done everything possible. But it still came back.”
Coming to terms with the fact that you have a terminal disease results in feelings of consternation, despair and many dark nights of the soul. For Karnes, it was no different. But what is different about Karnes is that she refused to stay down in the face of such tremendous adversity. Her story isn’t finished, not by a long shot.
“I feel like when I was first diagnosed in 2012, my whole outlook on life changed,” she said. “It made me realize the things in life that are important. I didn’t focus on those small things that didn’t matter. I just learned to look at the bigger picture, try to focus on the best in everything, not worry so much, and try to surround myself with positive vibes, not negative. Negative thoughts become negative things. I always try to be positive, even when it’s difficult.”
As she always does, Karnes is taking her newest challenge head-on. She met with a new medical oncologist at the Spielman center to review the PET scan results.
“He told me that it had metastasized to my bones,” she said. “Everything else looked good except for the lymph nodes in my sternum. I had a bronchoscopy on May 15th and got my results on May 17th that it was breast cancer. It was again estrogen progesterone positive. At this point, I wanted to make sure that I was doing everything possible to help slow the progression of tumor growth and had my ovaries removed at FCMH by Dr. Morris. Having my ovaries removed will help decrease the amount of estrogen that my body produces and will help my treatment tremendously. The surgery went great. I didn’t have any pain.”
Karnes has also started taking Letrozole, an oral medication, has started IBRANCE, a chemo therapy drug, and an injection of Xgeva, which helps harden the bones. She also recently had all of her wisdom teeth removed.
After finishing her third cycle of IBRANCE, a PET scan showed that “everything was shrinking. So that means my treatment is working,” she said with a bright smile.
Karnes said she has a wonderful support system from her family, her friends and her co-workers.
“There are other people who have been through similar ordeals here at work,” she said. “It’s nice to have those people to talk to because they’ve been there and know what you’re experiencing. I can talk to somebody who hasn’t been through it, but they don’t know those feelings inside that I’m experiencing or what I’m really going through.”
For those same reasons, Karnes now leads a breast cancer support group at FCMH that she started a little over a year ago with Dr. Morris and Chelsie Hornsby, director of business development at FCMH. The support group meets at the Women’s Wellness Center the second Tuesday of every month at 7 p.m.
While adjusting to her new reality, Karnes also had to make a decision on how much to tell her daughter about the cancer.
“At this stage, I’m still myself, I still feel the same. I feel good, I’m having no side effects. I’m not going to lose my hair from the medication I’m on,” she said. “At her age, which is 6 going on 7, I don’t want to scare her. So honestly, I haven’t been open to her about it yet. She knows that mommy had cancer before but she doesn’t know that mommy has cancer now. When the time is right and I see changes, I will be open with her. They haven’t put an expiration date on me so you never know anyway. I’m hoping that if something happens to me, it will be when she’s a little older and can understand it more.”
As well as staying an advocate for herself, Karnes encourages women to be advocates for themselves and their bodies.
“Women should start going to a gynecologist for a yearly exam definitely by the time they reach the age of 21,” she said. “You should also be doing your monthly breast exams yourself. Once a month, pick a day and do it at the same time. If you notice anything is different or you feel something is abnormal or something doesn’t look right, don’t second-guess it. Call your physician and go through same-day access. Just get it checked out. Your body knows you best and you know yourself the best, so I feel that if you’re paying attention to your body, it will talk to you and let you know when things are not right. If you feel something is not normal, keep pushing and be your own advocate until you get the answer that you need. If I hadn’t kept pushing, I very well might not be here right now.”
Being here right now for Karnes means living in the moment and keeping a positive and hopeful state of mind, even when things seem bleak.
“In the back of your mind you think to yourself sometimes, ‘What did I do to deserve this?’ But it’s nothing I did. Unfortunately we all have abnormal cells in our body….it’s just whether they decide to divide and grow. One in eight women will be diagnosed with breast cancer in their lifetime. Approximately 155,000 Americans are living with metastatic breast cancer and there are approximately 40,000 deaths annually in the U.S. from it. I’ve tried since my first diagnosis to be positive and try to educate and provide awareness of what is normal, what is not, and try to advocate to be your own advocate. As far as being positive, that is probably the best thing that I can do. Positivity is 50 percent of your battle. It’s good for me and good for others because I hope they can learn from my story.”
Reach Ryan Carter at 740-313-0352 or on Twitter @rywica