Noreen “Reenie” Malaney has always been conscientious about taking care of her body. That included doing regular breast self-examinations, one of which revealed a suspicious lump last winter. A subsequent mammogram set off a series of testing that included another mammogram, an ultrasound, and then a biopsy which showed she had stage 1, grade 2 breast cancer. She was diagnosed on Dec. 11.
When the 65-year-old Middleburg resident got the call, she said all she really heard was the word “cancer.” It’s a typical response.
“You panic, there are lots of tears,” she said. “You’re wondering, ‘Am I going to be ok? Is this a death sentence?' To a degree, even though mine was stage 1, grade 2, it doesn’t matter the diagnosis or what stage or grade you are to the patient. They just feel overwhelmed, anxious, scared…”
That kind of response to the news is something that Michele Heimbach and Kelly Lytle, patient navigators at the Thyra M. Humphreys Center for Breast Health at Evangelical Community Hospital in Lewisburg, said they always consider when they call patients with pathology results.
According to Heimbach, even though they as medical professionals understand the difference between a cancer that is highly treatable and non-life threatening, and cancer that is serious and must be dealt with immediately, “We have to pull ourselves back and just relate to the patient and understand that we’re really just telling them that they have cancer. That’s all they’re hearing. And then trying to get them to be as calm as they can be with that phone call.” Even while knowing that as soon as they hang up the phone, she said, they will go through a plethora of emotions as they face the fears surrounding the dreaded “c” word.
“They want to hear that they’re going to be okay,” Lytle said, “are they going to have to repeat chemotherapy. Right away, I think that’s a big trigger for women – they want to know if they’re going to lose their hair. When we are calling with their results, the first thing we want to tell them is it will be okay, we’re going to get through this together.”
If there is a patient who they notice is having an especially hard time, they also don’t hesitate to give out their email address and cell phone numbers.
“We are here step-by-step with them to get through this process,” Lytle said.
Appropriately named, these patient navigators walk alongside those dealing with cancer as they face uncertainties and unknowns. That of course includes treatment options, but could also mean addressing financial needs, insurance roadblocks, childcare, and more.
In addition, the way each patient reacts to the news is something they have to adjust to as well. For example, Lytle said as she prepares patients for their one-on-one consultation with the doctor, some of them want to hear every detail of their results and write it all down, while others simply want to know that they won’t be alone as they face the future.
“I feel like we do a really good job interpreting what they want or need to know at that time,” she said.
Lytle and Heimbach have been there for Malaney from the beginning, and to Malaney, it’s made all the difference. Heimbach was there at the start when there was a mix-up while transferring Malaney’s paperwork from a different institution. It was the day before Christmas Eve, she remembers, and “Michele called me at my home, she knew I was in distress. She talked me through my stress, my tears, my anxiety.
“When I met them in person at the consultation, both she and Kelly embraced me with their knowledge, their expertise, and also their care and compassion,” she said, adding, “It’s ongoing. We have developed a rapport and a relationship, a friendship – they are truly two awesome girls I met on my journey.”
Start of the journey
Typically, those diagnosed with breast cancer will receive an individualized consultation, or conference, with those who will be responsible for their care.
“The first important step is that first visit to go over the diagnosis, and to let them know there is a whole team of support people available for them at our center,” said Susan Branton, MD, FACS, medical director at Breast Health Center at UPMC in the Susquehanna Region. That team includes physician teams, imaging technologist, even office assistants. They are also told what to expect in the days ahead, such as studies to identify the stage of their cancer before a treatment plan is finalized.
They advise patients to have a support person with them who can “be a second set of ears,” she said, and a good notetaker. “Information given at that first discussion of their diagnosis is a lot of information to take in. It’s hard, I think, for someone who’s just gotten bad news to completely process all the information they’re given.”
Each patient is presented with options that are going to be best for their unique situation.
Lytle explains that the options will depend on whether their cancer is invasive. Surgical options might be a lumpectomy or mastectomy.
“We discuss their medical oncology and radiation oncology consults,” Lytle said, adding that they explain to patients that if they choose to have a lumpectomy, they will have to have radiation afterwards.
“A lot of women want to talk about surgical incisions, what it will look like and how it will feel,” Lytle said.
In some cases, patients may meet with a surgeon as one of the initial steps in the process.
According to Dr. Nicole Sharp Cottrell, breast surgical oncology at Geisinger, patients may come to their clinic to talk one-on-one about their options, or they might be referred to a multi-disciplinary clinic where they can meet with an entire team of surgeons, radiation specialist, medical oncologist, and others such as geneticists, social workers, and psychologists. Family history and genetic testing can reveal if they are at a higher risk of getting other cancers in the future.
“We have a big team that goes into the initial treatment of breast cancer, and even more people who play a role later on,” Sharp Cottrell said.
As the journey continues
By the time they meet with her, Sharp Cottrell said she starts out first by listening to her patients.
“It can be overwhelming,” she said. “It’s important for me to get a handle on what that patient has heard and absorbed so far. Sometimes all you hear is ‘cancer’ and you don’t hear anything else, such as it’s very early, or treatable, or curable.”
“I follow that up with providing them with the best comprehensive view of their cancer,” she said, “and that involves providing them with their current clinical stage of cancer.” A clinical breast exam will allow them to see what treatment options are available.
“One thing I love about my field,” Sharp Cottrell said, “is that for the most part, it’s very treatable, and in many circumstances, very curable.” Because of that, “I want ladies to feel empowered by their providers, that they have options.”
She discusses with them the risks and benefits of those options, and how to balance those with what is best for them, and what their priorities are. While the No. 1 goal is to treat the cancer, Sharp Cottrell also wants to know the long-term goals of each of her patients. Is it to get back to their family and work as quickly as possible with as little downtime and pain as possible, or are they more concerned about the look or feel of their breast after treatment? For younger patients, family planning goals, such as wanting to breast feed, can factor into treatment options as well.
Heimbach explains that each person is very different in what they might struggle with as they face this scary time. Some don’t know how they’ll handle their options financially, others are not sure what type of surgery they should have or what treatment they should go through. Many have to overcome the barrier that a friend or family member who had breast cancer may have received different treatment than what they are facing, because it really is unique for each person.
To help them through all of that, Heimbach said, “Sometimes it’s 10 minutes on the phone with them every day. Sometimes it’s an hour every day. But that’s what we’re here for.”
Branton said it’s important that patients stay informed and are educated on what’s happening at each step of care, and that they are assured of intact connections with their providers at any time of the day or night.
The Breast Health Center professionals can also help guide patients to reliable online sources where they can do some research on their own.
In addition, UPMC takes efforts to link patients to those who have undergone similar treatment – “patients on the other end who are living full, healthy lives,” Branton said. “They are hoping to give back by reaching somebody who is going through something they’ve gone through.”
Journey to the future
A survivorship team at Geisinger walks with patients after their cancer treatment, which includes continuing to screen for breast cancer and skin cancers that are commonly found afterwards.
“We want our patients to feel like they’re getting comprehensive care here, because they have all of those options before and after their follow-up,” Sharp Cottrell said. One of those follow-up options is plastic surgery for reconstruction.
“After they are done healing, we can make the look and feel their best,” she said.
“Survivorship” is certainly something that is considered – expected – at the moment of most breast cancer diagnoses.
“So the ‘beyond’ comes into place,” Branton said, “…how are they going to go about things once they’ve received a clean bill of health. That involves support and surveillance.” For some patients, that might mean navigating physical therapy, or mental or financial health issues as they get back on their feet.
Malaney is now on this ‘beyond’ step of the journey. Following a lumpectomy in January, four infusions of chemotherapy, and 16 back-to-back days of radiation in May, she is “free of disease” she reports. She continues to return to the breast center every three months, and she had a routine mammogram scheduled in December, which she is admittedly a little anxious about. She continues to take pills, and said she is especially pleased that following the devastating effects of chemotherapy, “My hair is coming in nicely.”
She also has a plethora of moments that she cherishes from her journey. She cries as she thinks about her father’s passing in November, just before her diagnosis, and says a book of prayers for difficult times that she stumbled upon while Christmas shopping helped her in the days ahead as she dealt with both grief and fear. Even though COVID restrictions kept her husband Steve from attending some of her treatment sessions, he was “awesome”, she said, a steady support who kept her in good spirits with “his good sense of humor.”
She kept a journal for a while, and when she was going through especially tough times, she busied herself by painting kindness rocks for each of her nurses, therapists, and doctors. She wore special bracelets at each step in her journey to remind her of the way she was overcoming, and if she has the heart to take them off, she will this Dec. 11 – which will mark one year since her diagnosis.
She began posting her journey on facebook and has been surprised at the outpouring of support she has received, and humbled by the ways people said they have been encouraged by her, and have also taken her advice to start doing routine breast self-exams.
She also began walking more, and said “That’s one of the best therapies I can recommend. Walk and talk with God.” A Christian, Malaney said she has gotten closer to God through this journey, and that she doesn’t know where she would be without her faith.
She summarizes her journey with a simple quote: “Cancer can catch you, but not your soul, neither your thoughts nor your heart.”