One of the advocacy sisters is Jennie Santiago. A 14-year breast cancer survivor, Jennie is Co-Director of the LatinaSHARE Program at SHARE, Self Help for Women with Breast or Ovarian Cancer in New York City and Survivor Patient Navigator at Mt. Sinai St. Luke’s Hospital. Her sister, Shirley Pacheco, is also a breast cancer survivor. Shirley is a volunteer and support group leader at Scripps Mercy Hospital in Chula Vista, California. They were both awarded scholarships from the Conquer Cancer Foundation to attend the 2015 Palliative Care in Oncology Symposium.
About our work as advocates
Jennie Santiago (JS): My interest in advocacy work began 14 years ago upon completion of my breast cancer treatment and joining one of LatinaSHARE’s support groups. There, I met women who had a multitude of problems beginning with no real knowledge or understanding of their breast cancer diagnosis due to the language barrier.
I began volunteering for SHARE where I was trained to work on their National Helpline (844-ASK-SHARE) and took various advocacy trainings that led to several trips to Capitol Hill through the National Breast Cancer Coalition to meet with elected officials to promote continued funding of breast cancer research. I was also trained to facilitate support groups and completed a certification course in Patient Navigation to become a Survivor Patient Navigator, a program unique to SHARE.
I have worked for the past eight years at the Breast Clinic of a New York City Hospital. My work at the clinic is to be with the patient in the exam room with the surgeon at the time of diagnosis. I translate and explain the diagnosis to the patient in their native language, Spanish. I make certain the patient fully comprehends the diagnosis and treatment plan. I then follow that patient with regular calls and appointments, through treatment and beyond offering both hospital and SHARE/LatinaSHARE resources that include educational programs and support groups in Spanish. The work I do at the clinic tracking each patient I see enhances that patient’s knowledge of breast cancer and ensures compliance with their treatment plan. My presence in that room at the time of diagnosis also serves as an example to the patient of long-term survivorship and that there is life after a cancer diagnosis.
Shirley Pacheco (SP): At the age of 51, I was diagnosed with invasive ductal carcinoma of the breast. Nine months after completing treatment, I was diagnosed with invasive lobular carcinoma in my other breast. Following a double mastectomy and reconstruction, I took stock in my journey. Knowing how strength, positivity, and laughter guided me through treatments and surgeries, I believed I could be of assistance to other patients with breast cancer.
Initially and for about one year, I was a volunteer on SHARE's National Helpline. I talked to women across the country at varying stages of their breast cancer journey. Believing I could be of greater value on a face-to-face basis, I decided to seek volunteer work at my hospital's Well-Being Center, located in a predominantly Spanish-speaking community of low economic means. I specifically chose this locale because, as a Latina, I understand the culture. This often includes a language barrier, lack of education, and the notion that cancer is synonymous with death. I now work closely with the hospital and community’s breast cancer patients from diagnosis and for one year thereafter. I also facilitate the center's first breast cancer support group, which we launched one year ago.
JS: I desired to attend the Palliative Care in Oncology Symposium to enhance my level of knowledge and understanding on this subject matter as it relates to patient-centered care. For the most part, patients usually think of palliative care as end-of-life treatment. Now, I can explain that research has shown how meeting with a palliative care team at the time of diagnosis can lead to better treatment outcome in the long run.
SP: I was hoping to gain more insight of palliative care versus hospice care, the former practice which my hospital is about to set into motion. Also, because of the mindset of the Latino culture when it comes to end-of-life care, I was curious to learn how doctors are broaching the subject and what steps they are taking to assure the patient understands the difference between palliative and hospice care.
What we learned at the Palliative Care in Oncology Symposium
JS and SP: In thinking about the topics that stood out, we both agreed on three:
Cachexia, which is the significant loss of weight and muscle mass
The question, “Why Does Cancer Hurt?”
The interaction between the doctor and patient when discussing palliative care versus hospice care
Cachexia was a word we had never heard, although we have seen its effects on patients with advanced cancer. Learning more about this symptom, understanding that the patient simply cannot fathom eating a morsel, and comprehending the family member's sense of failure when unable to get their loved one to eat was enlightening.
The second discussion on why cancer hurts was fascinating because it appears cancer hurts at the secondary, metastasized site rather than the cancer’s original site. This question is often asked by the patients we work with, and now we can better discuss the topic with them.
Third, studies have shown an increased awareness by the patient when the doctor ensures they fully comprehend the scope of their illness. So, introducing palliative care consults from the time of diagnosis leads to better treatment goals and decisions for the patient. The patients also do better with the extra level of support from the palliative care team.
Moreover, clinicians can benefit from training to improve their communication skills to better connect with patients and their needs. It is crucial that patients be told and comprehend the difference between palliative care and hospice care.
We are excited to share our new knowledge
We will take all we have seen and heard back to the women in our support groups and the newly-diagnosed patients we work with at the hospitals. We will be able to relay to them in Spanish all the exciting research we learned about at the Symposium, the people we met, the researchers and doctors we spoke with, and what we garnered from other advocates.
JS:I will be talking to the surgeon I work with at the Breast Clinic to see how we can begin incorporating palliative care consults to women who are newly diagnosed, or at the very least get the conversation started since the hospital does not have that practice in place as of yet.
JS and SP: We want to thank the sponsors who made available the scholarships for us to attend this Symposium allowing us to further augment our cancer education, which in turn will benefit the women we serve.