In 2007, Dr. Felicia Marie Knaul went to a local, private clinic in Cuernavaca, Morelos, Mexico, to get her first baseline mammogram at age 41. With no family history of cancer, she had no reason to expect a cancer diagnosis. But at the appointment, her technician became worried. Dr. Knaul assumed that perhaps she was being overdiagnosed because her husband, University of Miami President Julio Frenk, M.D., Ph.D., was the former Minister of Health in Mexico. After back-and-forth discussions between Dr. Knaul, the clinic, and her care team, she realized this wasn’t just a case of overdiagnosis. She had a much more severe problem.
She had a triple-positive breast cancer diagnosis and two tumors. Within 10 days of this diagnosis, treatment began. So did a period of intense questioning to try to find both hope and the right pathway to cure and survivorship. It is a revolving door of asking questions, getting answers, and making decisions until the cycle repeats itself—over and over again throughout a lengthy treatment process.
Depending on who you ask, the information a patient wishes to receive when they first get their official diagnosis can vary. While some prefer all the information upfront, from diagnosis to treatment symptoms and beyond, some feel overwhelmed by the sheer volume.
“Complex messages that you hear as determining the length and quality of your life are hard to digest,” she said. “Especially because there is always a dose of uncertainty. Yet, choices must be made at every step of the cancer treatment journey.”
She continued, “Some people want their doctor to say, ‘With all my medical training and my expertise, this is what will most likely save your life and reduce your chance of recurrence.’ But most, myself included, want to take an active part in the decision-making process.”
Looking back, Dr. Knaul knows her access to care and information was beyond what the majority of people living with cancer can get. Many worldwide do not have basic access to early diagnosis or preventative medicine, much less survivorship care.
As an advocate, she is always concerned about women with little access and how that impacts their choices. “Do you share with them all you know of the treatment options, even if they don’t have access or lack insurance and cannot afford it? I always come to the same conclusion: Yes, because patients and their families can’t advocate for more and better care if they are denied not only the care but also the information.”
Even with Dr. Knaul’s above-average access to information about her cancer journey, some survivorship issues took her by surprise, which she admitted made them more challenging to deal with. It wasn’t only physical symptoms but also the genuine emotions and mental turmoil that came with survivorship and how much life was disrupted.
“I had to learn to accept that some of the effects of cancer treatment, some of the things that happened to my body, are irreversible. More importantly, I had to learn to convert my reality into the life that I want to live.”
What Dr. Knaul described may sound familiar to survivors: cancer changes your life, and accepting that may come easier to some than others. In Dr. Knaul’s case, she took her diagnosis and treatment head-on but also wanted to take control of what she could to make her life what she wanted it to be going forward.
“I don't want to sugarcoat it. Many days are a struggle.” Dr. Knaul said of her own survivorship experience. “I have chemo brain. I don’t hide the fact that I’m mastectomized or that I am not symmetric. I try to be open about issues of sexuality and how to meet these with a positive attitude and self-image.”
Self-image, or rather, self-perception after a cancer diagnosis, is a significant point of interest for Dr. Knaul, but not in the traditional sense of the word.
“Some of the most beautiful people in the world are those who have the capacity to share a message and push forward a voice. When you are forced to go through cancer treatment, you can access all of those other parts of being strong and being beautiful you might not have been able to access otherwise. No matter what your situation is when you get a diagnosis, there’s strength there that you derive from this experience and how you look at yourself in the mirror versus what society may have told you to look for in the mirror.”
Just after her first mastectomy, an interviewer in Mexico asked Dr. Knaul what she saw when she looked in the mirror, and she recalled seeing an angry scar that looked like a frown and went halfway across her chest. Her response in 2008: “What I see in the mirror is a woman who's much stronger and more attractive than the one I saw before I had breast cancer.” And her response is the same today, now with two scars, after the second mastectomy in 2022, which she had at the Lennar Foundation Medical Center at Sylvester Comprehensive Cancer Center.
Being open about a symptom you’re experiencing can not only help you overcome it but also help shine a light on the many issues a cancer survivor can face post-treatment. As a breast cancer survivor and advocate, Dr. Knaul speaks at events around the globe, and she doesn’t let chemo brain or hot flashes stop her from doing her job or sharing her story.
“The hot flashes during treatment were pretty awful,” she said. “You’ll be out somewhere, and suddenly, you’re soaking in sweat. If you allow yourself to feel shame, it will stop you from leading your full life. I chose to demonstrate that I could cope. I’d be giving a talk or participating in a meeting and take out a handmade Mexican fan as my face began to bead with sweat. Rather than trying to cover up those symptoms, I tried to show that they could be managed.”
Everyone’s survivorship journey differs, with a wide range of possible physical, mental and psychosocial effects. Focusing on what we can control is a skill that many people struggle with, but with guidance and access to supportive care, addressing those needs can improve quality of life, and that must include survivors receiving palliative care. With access to treatment, individuals with metastatic disease can lead full and very long lives.
“We've done a great disservice to patients by splitting us up into those who are metastatic and those who are not; those who can be cured from those who cannot be cured of their breast cancer; the haves and the have nots. The survivors and the non-survivors. Survivorship is a process that begins from the point of diagnosis and lasts you throughout your life, whatever your diagnosis.”
Convinced of this, Knaul led the Lancet Commission on Global Access to Palliative Care and Pain Control. In that role, she learned that palliative care includes services that support patients from the point of diagnosis to a life-threatening diagnosis. Palliative care is not restricted to end-of-life or terminal diseases.
“In fact, I believe that survivorship has many stages and that it cannot be separated from supportive care,” said Knaul.
According to Jessica MacIntyre, ARNP, NP-C, AOCNP, a nurse practitioner and executive director of clinical operations at Sylvester Comprehensive Cancer Center, where palliative care is introduced in a patient’s journey is actually part of a larger national discussion. More on this topic to come in future issues of Sylvester Journeys: Our Voices.
“When you are presented with a cancer diagnosis, you can’t pretend that you're not fighting something that could kill you,” Dr. Knaul said. “That's what you think about all the time. It's what your kids think about it all the time. This is what your partner and your parents worry about. Palliative care includes supportive interventions that can help you and your family to cope with those fears and prevent them from generating lasting trauma or complex bereavement.”
No matter your diagnosis or your prognosis, Sylvester offers access to treatment options that improve outcomes and supportive services that improve the survivorship experience.
For Dr. Knaul, striving for a better quality of life is the key to successful cancer survivorship.
“My message around survivorship is that I live life like there’s always a workaround to do the things I was able to do before. The important thing is not to give up and assume your quality of life is permanently deteriorated. We can feel pride in ourselves and as human beings that we didn’t have before. That can be extremely empowering. It’s a badge that you wear across your chest that says, ‘courageous.’”
Get Help if You Need It
We encourage you to ask for help if you need it. There are many organizations available locally, nationally, and internationally that may be able to improve aspects of your survivorship experience. Whether you need physical therapy, meditation or financial assistance, we’ve included a list of some resources below, but let a Sylvester social worker know if you need help obtaining a specific kind of service.
- Cancer Financial Assistance Coalition
- CancerCare
- Family Reach
- The Leukemia & Lymphoma Society
- Triage Cancer
- NeedyMeds.com
- Good Days
- Patient Access Network Foundation
- The Dempsey Center
About Dr. Knaul
At the University of Miami, Dr. Knaul is Director of the Institute for Advanced Study of the Americas and of the office for Hemispheric and Global Affairs, Professor at the Leonard M. Miller School of Medicine, a Full Member of the Cancer Control Program at the Sylvester Comprehensive Cancer Center, and cross-appointed at the School of Nursing and Health Studies, the Herbert Business School, and the College of Arts and Sciences.
Dr. Knaul wants to give special thanks and acknowledgment to the staff at Sylvester’s Lennar location, where she most recently stayed for treatment.