Every breast cancer patient’s journey is unique. Treatment and recovery are affected by everything from genetics, to stage and type of cancer, to medical advancements, to attitude and more. But regardless of the differences in circumstances, every breast cancer survivor has hard-won wisdom to share.
Two local women, both diagnosed with breast cancer at the age of 49 (one in 1996 and one in 2019), share their stories here. Their experiences are very different, to be sure, but there are lessons to be gleaned from each.
“Cross off those bucket lists”
Despite a difficult 25-year battle with breast cancer, Stephany Romano has continued to live life to the fullest.
Although temporarily sidelined by the pandemic, the active 74-year-old likes to play pickleball, travel with her husband, spend time with her grandchildren, and try new things.
“When you first get your diagnosis, you kind of realize that life is really fragile. [That realization] just comes up and grabs you fast,” she says. “You learn to understand the value of doing whatever you want to do and not waiting.”
Romano was at the start of a six-week trip to Greece in 1996 when she first discovered a lump in her breast. She was not alarmed, having had several benign lumps in the past, but she made plans to have it checked out after finishing several subsequent business trips. At least nine weeks went by before she went in for the mammogram that discovered what would turn out to be a cancerous mass.
The year was 1996, and at the time, the most common breast cancer treatment was mastectomy. However, new studies were starting to come out showing that patients who received a lumpectomy paired with radiation had the same life expectancy as mastectomy patients, so Romano chose a treatment regimen that included chemotherapy, lumpectomy, and radiation.
Unfortunately, she experienced unexpected complications almost from the get-go.
After her first surgery, which included a lumpectomy and the removal of 29 lymph nodes, the margins were not clear, so she had to undergo a second surgery to remove even more of her breast. As more lumps developed in the years that followed, Romano also needed to have a few more open biopsies and lumpectomies, resulting in a misshapen breast.
Frustrated by her inability to find bras or bathing suits that fit, Romano decided to have a simple reconstructive surgery at Johns Hopkins University Hospital. While the surgeon successfully rebuilt her breast, Romano soon discovered that the radiation she had received during treatment had permanently damaged the vascularity of her breast, and her surgical incisions were not healing.
As a result, she was sent to hyperbaric oxygen therapy every day for six weeks, which involved spending 2 hours a day inside a pressurized high oxygen chamber in order to promote healing of the surgical site.
Throughout all of this, Romano continued to work at Penn State, teaching a full course load and serving as Director of Professional Development for the Health Policy and Administration Department.
Eventually, she healed and life got back to some semblance of normal. She continued to travel to Penn State Hershey’s Breast Care Center for annual checkups, always making an enjoyable day of it with her husband: a mammogram in the morning, followed by a nice lunch out in Hershey. So she was taken aback when, at her August 2019 appointment, her mammogram caught a mass in her reconstructed breast.
The mass turned out to be yet another complication caused by her previous radiation therapy: an atypical vascular lesion, or AVL, between her nipple and her chest wall. If left untreated, she explains, an AVL can turn into angiosarcoma, an aggressive, often deadly form of cancer.
So, 24 years after it was first presented to her as an option, Romano decided to have a double mastectomy. Fortunately, that surgery appears to have gone smoothly.
Romano will continue to be checked annually for any more AVLs that could develop on her irradiated skin, “but since I made the decision to do both breasts, there’s a whole lot less that can happen now,” she says.
If she could go back in time, she says, she would do a few things differently.
First, although she acknowledges that her complications were very rare, she would have opted for that mastectomy back in 1996.
“As I look back on this whole thing, do I wish I had made a different decision initially? Absolutely. I do. Because it has been a lot: the breast surgery, the biopsies, the reconstructive surgery, the hyperbaric therapy, and finally the double mastectomy,” she says.
While she says every woman has to make her own decision based on their own circumstances, to anyone facing a similar choice, she would simply advise them to keep in mind that, “Recommendations are based on scientific studies of life expectancy, but there are other things to consider.”
In hindsight, she also wishes she had slowed down the hectic pace of her life a bit after her first diagnosis.
“I drove myself to all my chemo appointments, I drove to all my radiations, and I kept working. I would not recommend it,” she says. “When I committed to continuing to teach, I felt fine. But that was pre-surgeries, pre having a port put in, pre-chemo, pre-radiation… And there’s something they don’t warn you about called ‘chemo brain.’ You can develop pretty severe memory issues from chemo. That made working hard sometimes.”
She continues, “If I could give one recommendation to people, I would say, ‘If you can get sick time, take it. Take time for yourself. Get massages. Have lunch with your friends. Spend time with your family. Exercise. Travel.’ I really wished that I had taken more time for myself.”
Romano also recommends celebrating every milestone during treatment.
“Between chemo and radiation, we had a month and we went to Aspen. We celebrated the last day of my radiation at an all-inclusive resort in St. Lucia,” she says. “It doesn’t have to be that big, but celebrate each step. It’s such a healthy way to do it, rather than just buckling through it all.”
Upon finishing her treatment after her first diagnosis, Romano says she and her husband decided not to wait any longer to do the things they had always dreamed of doing. They bought a sailboat on a whim and taught themselves to sail, spent a week riding horses on a ranch in the Grand Tetons, and continued to travel the world. She would encourage everyone, cancer patients or not, to follow her example: “You never know what’s going to happen. One day you’re feeling fine, and then all hell breaks loose. Cross off those bucket lists. Just go for it.”
The value of patience and support
Maureen “Mo” Cooper
It started out in the summer of 2019 as just a vague sensation in her left breast. Maureen “Mo” Cooper couldn’t really define it. It wasn’t a lump, it wasn’t painful, and it wasn’t constant. But it was enough to remind her that she was past due for her annual mammogram.
The then 49-year-old quickly scheduled an appointment at the Mount Nittany Health Breast Care Center. A few days after her mammogram, she was called back to do more imaging – something that had never happened to Cooper before.
The radiologist analyzing her second mammogram was not alarmed at what she saw, but wanted to keep her eye on one slightly suspicious-looking area. She offered Cooper a choice: get it biopsied right away, or come back in six months for a re-check. Cooper decided to get the biopsy right away.
“Everything went fast in the beginning. I had the biopsy the following week. Forty-eight hours later, I got a call from my primary care physician, asking if I could come in that day. And they said, ‘Can you bring someone with you?’ So obviously I knew I was not going to get great information,” she says.
She and her husband headed to the doctor, where they were given the diagnosis: invasive ductile carcinoma, the most common form of breast cancer.
Cooper, who is the Director of Commonwealth Campus Athletics at Penn State, decided to get a second opinion at Penn State Hershey. While everything about her diagnosis had progressed with an almost frantic urgency until this point, this is when the whirlwind pace started to slow down, much to Cooper’s dismay.
“When you first receive that diagnosis, it’s a shock to your system and it makes you panic a little. I wanted to move ahead with a plan of action immediately, but that’s not how it works,” she says. “Based on my initial diagnosis and my health, it was determined that I was not one of those people that had to be seen immediately. So it probably took about two or three weeks for me to see the breast surgeon. The waiting was excruciating.”
Based on genetic testing, the recommended treatment was a partial mastectomy and radiation. Cooper had her surgery at the beginning of October, and began a seven-week regimen of radiation treatments at Mount Nittany Medical Center a month later.
Through it all, she leaned on her husband (Rob Cooper, who is the head coach of the Penn State baseball team) and their two teenage sons for support.
“I’m really thankful that my husband and my sons were here to keep my spirits up and make me laugh and sort of allowed me to keep going with my daily activities,” she says. “I can’t stress enough how amazing they were. Rob was willing to drop everything to be with me and to make sure I was okay… I think all the time about how lucky I was that this all happened pre-pandemic. Because if this had happened a few months later, my husband would not have been able to come with me to my appointments, and I would have been super sad.”
Cooper continued to work at her job as Director of Commonwealth Campus Athletics at Penn State throughout her treatment.
“I felt like being able to go to work and having something else to focus on was really good for me and super important for my mental state. So I did. I think if I had been able to sit in my head too long, I might have just crawled under the covers and never come out,” she says.
Aside from an occasional mild flare-up of “lymphedema,” a swelling of her left hand caused by the removal of several lymph nodes, Cooper’s recovery seems to be going smoothly. She gets a mammogram every 6 months, visits her oncologists and breast surgeon regularly, and currently receives monthly hormone injections and takes a daily pill.
Cooper was invited to be a guest coach at the 2020 Lady Lion Pink Zone game. She says she is grateful for the community of breast cancer survivors who offered her words of support and encouragement when they heard about her diagnosis. She would advise anyone dealing with a new diagnosis to be open to receiving support from the community as well as their loved ones.
“People will jump in to help if they can,” she says. “I had friends who put me in touch with other survivors. I feel like it’s a community you are sort of thrown into, maybe not by choice, but it’s been an amazing experience to get help and comfort and understanding from people who have gone through it.”
“The other thing I would say is, take things one thing at a time,” she continues. “Do not get too far ahead in your own mind. And as much as you can, be patient. I struggled mightily with that.”