Published on January 11, 2021
Survivor and Patient Advocate Shares Helpful Advice
We know that being newly diagnosed with breast cancer is an extremely difficult experience, which can come with an array of questions and concerns. In this segment, breast cancer survivor Lee Ann Biafora, MS, RN, is here to share the story of her journey with breast cancer, including her initial reaction to being diagnosed, the first steps she took toward beginning her treatment journey, and helpful advice for fellow patients. She is joined by host, patient advocate, and author Andrea Hutton, who is also a breast cancer survivor. Keep watching to hear their personal insights and more.
Transcript | Breast Cancer Survivor Shares Her Story & Advice for Patients
Andrea Hutton: Hello, I'm Andrea Hutton with Patient Power, and I'm very happy to be here today with Lea Ann Biafora from Beacon Advocates. Lea Ann, thank you so much for agreeing to talk to us today.
Lea Ann Biafora: Oh, it's my pleasure to be here with you, Andrea.
Andrea Hutton: So, Lea Ann, you're a breast cancer survivor or patient, I would love to hear your story about you found a lump and what happened after that?
Breast Cancer Diagnosis Story
Lea Ann Biafora: Thank you for the question. Once I found a lump, I went and sought after a physician over at an academic center. I chose that academic center because I wanted a clinical trial, and luckily there was a clinical trial that I met the criteria. I started treatment after a series of tests to determine staging, which was included, the CAT scan and PET scan, blood test, and so forth. Went through four months of treatment and then ended up going for surgical intervention, which was a lumpectomy. I had lump lymph node involvement, and that's why I needed to have chemotherapy. I had to have all my lymph nodes taken out, so a dissection. Then I went on to receive chemotherapy.... I mean, excuse me, receive radiation.
That was from February 15th, until Thanksgiving, I had been in active treatment. Took a couple of breaks just for healing, but it was certainly quite a journey that was eye-opening as a patient, as a nurse who's been in the field, but also that flipped over to the patient side. Currently, I alternate because I chose to have a lumpectomy, not a mastectomy. I go for mammograms every year and I break that up with a breast MRI. So, every six months I'm getting imaging. My particular situation was one that I wanted to go get into a clinical trial. It was a neoadjuvant clinical trial, so one that you do chemotherapy before you go for surgery and to protect your breast, to do a lumpectomy was my ideal situation.
Andrea Hutton: What made you decide to go in for a clinical trial as opposed to the standard of care?
Why Did You Choose a Clinical Trial as Opposed to the Standard of Care?
Lea Ann Biafora: Well, quite frankly, I've been in healthcare and working in cancer care for my whole career. I've worked in clinical trials in Boston, in New York City. I know the value that they bring. It is underutilized, there's only about 4% of the citizens in the United States utilize clinical trials. It's underutilized for sure. But with immunotherapy, the discoveries and advancements in immunotherapy are such that I really wanted to be a part of that. If I had an opportunity to have the standard of care plus an immunotherapeutic agent, I wanted to make sure I had that.
Andrea Hutton: What is the one thing you want patients to know about that early diagnosis process?
What Should Newly Diagnosed Breast Cancer Patients Know?
Lea Ann Biafora: With the early diagnosis is really understand, do the best you can to understand. There's a lot of incredible wealth of resources out there for patient education. What I would hope people would walk away with from this interview is, that it's critical for one to be aware of what their data is. What's in your makeup? What is specific to you? Because we've had such incredible advancements over these past few years. There's a wealth of treatment options. Unfortunately, not all physicians are utilizing the same practice. I think it's really important for people to become aware of their own situation and become as knowledgeable as possible so they can ask the correct questions so they can make an informed decision. It must be a shared decision.
Andrea Hutton: I'm a metastatic breast cancer patient myself, so I have been in your shoes, or am in your shoes.
Lea Ann Biafora: Yeah, it continues, yeah.
Andrea Hutton: In my experience, yes, that first initial diagnosis is such a… your heart just drops to the floor and then, when you pick yourself up and say, "Okay, now what?" And, certainly, now there are treatment options.
Lea Ann Biafora: In my particular situation, I had to make a decision to get a second and third opinion because my surgeon was very adamant about one particular treatment option. So, luckily, I was able to finish my treatment and go up to a different facility, a scientific facility, to get a second opinion.
Andrea Hutton: Was it difficult for you emotionally to leave your doctor and go to another one? I know patients feel often that trust with their doctor. This person is supposed to be the most knowledgeable and helping you through this and you really want to trust. How do you handle that?
Why Should Patients Seek A Second Opinion?
Lea Ann Biafora: I thought it was important for me to go to a second opinion. I did not have a problem with going up to a second opinion because I had trust in the institution where I was going. I believe in transparency and clear communication with all of the medical team members, and I had that. You know, you have to make a decision for yourself because it is your body.
Andrea Hutton: How many years ago were you diagnosed?
Lea Ann Biafora: Five years.
Andrea Hutton: Five years. In these five years, you had to tell your children, you had to step away from your career for a while, I would guess.
Lea Ann Biafora: No, actually I didn't. I had the fortune of being able to work while I was going through treatment. I think having cancer is an eye-opening experience. You set sail on this journey that you have milestones that you want to meet, and then cancer comes in, and it's a storm and it just kind of makes you, as someone once said, adjust your sails. You have to adjust your sails as you go forward, because you keep on going forward, there's no other choice. Through that journey, I found a lot of beauty. I found a lot more energy to get back into my own advocacy business that I had, but it's an interesting journey when you feel you've made that decision, you've moved forward, and you realize how fortunate you are to have gotten through it. There are so many people that live this every day, like you. I have a lot of friends that are living with it every day.
Andrea Hutton: Tell me about your work now and what you're doing to help patients.
What is Beacon Advocates, and How Can it Help Patients?
Lea Ann Biafora: Well, many years ago, I started this company. It's a care management or a healthcare advocacy business for cancer patients and their families. After a couple of experiences of witnessing patients really struggle, older folks especially, living with a cancer diagnosis, but have other chronic conditions, which are the majority. In the community setting, having no one to support them and to bring that care, to coordinate their care.
Andrea Hutton: How do you feel, moving forward, about your diagnosis? Do you think of yourself as a survivor? I know I'm living with this every day, and sometimes that little cancer bird is sitting on my shoulder right here and sometimes it's more of an elephant in the room. How do you live with that?
Reflection on Life as A Breast Cancer Survivor
Lea Ann Biafora: I'm not cancer. Right? I think is a terrible thing that happens. It was a situation that happened. It happens. For me, I get that every time I get a scan, is when I have that anxiety. The scan-xiety is so real. One can really talk yourself down and think about, just wait until you get your results. But the reality is, is that it's always there. It's always going to be there, but I honestly try to live my life without thinking about it. It's just when those two times a year that I really, I have a lot of... It's challenging at times, and I think every cancer patient living with cancer feels that way.
Andrea Hutton: Well, thank you so much for giving us a little inspiration and knowledge and hope.
Lea Ann Biafora: Well, thank you. It's been a pleasure to be here with you and to help with anybody's journey.
Andrea Hutton: Thank you, Lea Ann.
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