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25 Sep What is Integrative Cancer Care? – Q&A with Carole O’Toole

This September I celebrated my 8th REBIRTHday and also my first-year work anniversary. When I am working with patients, particularly those just out of treatment, many of them feel compelled to give back to their community and many of them want to know how I got my awesome job. Let me start by saying that my role is not an easy one. It takes a huge emotional toll and admittedly, I still have some difficulty setting healthy boundaries.

The journey started with my own breast cancer diagnosis of stage II triple negative disease in 2008. Since there are no known targeted therapies to treat this illness, I had both the challenge of undergoing extremely aggressive treatment and the advantage of utilizing my own integrative approach.  I worked tirelessly alongside my physicians to heal myself. They did what they had to do in the hospital setting and I worked even harder with my own self-care regimen.

After completing treatment, I returned to school and earned my certification in holistic nutrition, patient navigation and later the food therapy program. However, the most important program specifically for those who want to work with the cancer community, was at the Institute for Integrative Oncology Navigation an initiative of Smith Farm Center for Healing and the Arts. Since 2012, I have been part of the training faculty and will be joining them at their upcoming program at Kripalu, a retreat center for yoga and health. I have always wanted to go to the facility and never in a million years did I believe my first visit, would be as a guest speaker. I recently had the opportunity to talk about the course with my mentor, author, and good friend, Carole O’Toole. Every time we speak I learn more about this captivating woman. You can read our Q&A below.

For more information: https://kripalu.org/presenters-programs/integrative-cancer-care-navigation-training

Q: You are one of the founders and presenters of the Integrative Cancer Care Navigation Training. What led you to do this work?

After experiencing my own cancer challenge 22 years ago, I felt a deep commitment to making the experience of going through cancer treatment less overwhelming, frustrating and dehumanizing for others facing cancer. Patients are still burdened with having to jump on a steep learning curve when diagnosed: grasping some understanding of their illness, having to select treatments they have most likely never heard of before, advocating for their care, communicating with their medical team in what feels like a foreign language,. all the while coping with the disease, side effects from treatments or their cancer, and the fact that their world has been suddenly turned upside-down. I became impassioned to help others get through this cancer experience in a way that is more empowering, supportive and honors their truth.

Having been introduced to complementary cancer therapies during my illness, and experiencing the powerful role they played in my own healing, I am convinced that all cancer patients should have access to integrative cancer care: in other words, the best conventional medical treatments alongside evidence-based complementary approaches. They need reliable information on appropriate complementary therapies so they can make responsible choices that support their cancer care, and I believe that trained integrative navigators are the best people to do that. That is what led me to develop a national training in integrative cancer care navigation.

Q: Self-care is very unique to the individual. Could you tell us what your regimen was like when you were going through cancer treatment? How has it changed?

Good question! When I was immersed in my treatment, I and my family focused first and foremost in regaining my health, and without that support I don’t know if I would have been as thorough, as it is so easy for us to deny the importance of self-care. But through their encouragement and my own commitment to healing, I developed a daily practice of meditation, learned stress-reduction techniques, including breath work and relaxation exercises, journaled, became a devotee of guided imagery, which I still hold as a very powerful tool in self-care, adopted a vegetarian/whole foods diet, practiced reiki and yoga, had regular massage, walked as much as I could, and made time every day for seeking joy in my life-no matter what- and expressing gratitude. It was a full-time job, but one that I was convinced was absolutely essential to keeping hold of my essential self when going through treatment and on into recovery.

While I wish I could say I still incorporate all of the above in my self-care, life takes back over, especially in our busy culture. I would say that about the only practice I have let go of is journaling. And while I still practice all of the above, the intensity varies… for instance, I seek massage when my body tells me to, instead of on a regular schedule. I mix up my exercise, and my meditation practice may take the form of reading poetry, conducting a reiki self-scan, or just being in silence outdoors. And I am religious about finding gratitude in the everyday. It is my daily acknowledgement of the blessings that have been bestowed on me, including still being here. I listen to my body a lot more than I used to, and try my best to honor what I am hearing!

Q: For those that don’t know, what is the difference between a patient navigator and an integrative cancer care navigator?

According to the National Cancer Institute, “‘patient navigation’ in cancer care refers to the assistance offered to healthcare consumers (patients, survivors, families, and caregivers) to help them access and then chart a course through the healthcare system and overcome any barriers to quality care.” Traditionally it has been offered primarily in the medical setting and has focused on access to conventional medical treatment, although in recent years, patient navigation has expanded to include psychosocial support.
When we developed our integrative model, we wanted to expand upon the original definition of patient navigation to include more comprehensive support throughout the entire cancer continuum, and through improving access to appropriate complementary therapies that could contribute to a person’s healing on all levels: physical, emotional and spiritual.

Integrative Oncology Navigation is a patient-centered, whole person healthcare service delivery model. While Integrative Navigators reduce barriers to cancer care and provide education, guidance, and support to patients and their caregivers across the cancer continuum, as traditional navigators do, additionally, Integrative Navigators provide assistance in the responsible selection and use of appropriate, evidence-based complementary approaches alongside conventional medical treatment . It opens up a whole new world for people dealing with cancer and has the potential for altering the cancer experience in a very positive way.

Q: As part of the training faculty of this program, I always find that I learn something new, could you tell us what to expect this year now that the integrative cancer navigation training has moved to Kripalu?

I am so excited to be offering our training at Kripalu for the first time this year! We always provide our participants with the latest updates in integrative oncology, so our six day training is current and comprehensive. But this year especially, we are excited to have with us several new faculty of national renown, including Dr. Gary Deng, Director of Integrative Medicine at Memorial Sloan Kettering and a leader in integrative oncology, and Dr. Lise Alschuler, who is a pioneer in oncologic naturopathy. Our participants will be thoroughly immersed in the latest in complementary approaches in cancer care, new developments in patient communication, experience first-hand many complementary therapies so they can speak from personal experience when working with their patients, have access to innovative navigators-like yourself, Eileen- with years of experience in advancing the field, and leave with the resources they need to be able to effectively guide people to responsibly using appropriate therapies in their care plan.. all within the serene campus of Kripalu, with access to their restorative services, that will reinforce the power of self-care. What could be better??!

Q: What is your vision for the future of healthcare and how it treats those with cancer, their exhausted caregivers, and those with other chronic illnesses?

I could spend a day talking about this topic. I wish I could paint a rosy picture for all of us, and I do have optimism for where we are headed. But I prefer to offer “realistic optimism”, meaning we need to be well aware of our predicted shortage of oncologists, and the continued increase in caregiving that will be demanded of our loved ones. This reality calls for us to be even more bold and creative. I am excited about the recent scientific advances in cancer therapies, move towards personalized medicine, and even our “moon shot” recommendations, provided of course that they receive full financial support. But while scientific advances show great promise and offer us hope, we fall short on the human side of the patient experience. So here is my vision/hope for the future:

I would like to see organized programs of instruction and ongoing support for caregivers, so they can feel better-equipped, more balanced and less alone.

We need to do better in offering cancer patients survivorship services from the start that address the whole person, with a truly integrative team (vs integrated) that values each member of the team and shares a common goal of honoring the individual patient wherever they are in their lives, and together addressing the increasing number of late-term/long-term effects of living with a chronic illness.

I see improved education for medical students, oncologists and primary care physicians in the human side of medicine, so that patients feel truly heard.

And I think we can do so much better in developing multi-disciplinary teams to address such a multi-faceted illness as cancer. These teams must include integrative navigators, who I believe are best-equipped to serve as a bridge between conventional and complementary cancer care, educating patients and the team in effectively using supportive therapies that do not compromise a patient’s medical treatment, and in incorporating these therapies into the patient’s healing plan.

“I look to a future where all patients have integrative cancer care services easily available & accessible to them.” ~ Carole O’Toole

— ✰Eileen Z. Fuentes✰ (@EileenZFuentes) September 26, 2016

While we all want cancer to be eradicated in our lifetime, we need to expand our approach beyond curing to include healing: it is what patients want and deserve. For, as Dr. Rachel Remen has noted, “When we are doing healing work, we honor something innate in the person – something which is sometimes deeply buried. The healing work is to bring that out into the light, into the day and allow it to do its work.” With integrative cancer care, including integrative navigation, the focus is on healing. I look to a future where all patients have integrative cancer care services easily available and accessible to them. That’s what we are working towards with our training.