Cancer Caregiver Guide: How to Be an Effective Advocate for Your Loved One
Featuring: Rochelle Prosser, RN, CLNC
In short
Rochelle Prosser, RN — a nurse who has spent 15 years as a caregiver to family members with cancer — shares hard-won lessons on advocating effectively for a loved one through diagnosis, treatment, and survivorship. She covers practical challenges like finding quality care, managing side effects, navigating finances, and communicating with doctors, alongside the emotional and mental health needs that caregivers themselves often go unrecognized for.
- •Seek mental health support for yourself as a caregiver — your emotional struggles are real and valid, even if no one offers it to you automatically.
- •When a loved one's behavior changes during treatment, consider that the drugs may be the cause, not a change in who they are — approach it without blame.
- •Cancer centers are not all equal; what treatments you can access often depends on each center's pharmacy contracts, so it's worth researching your options.
- •Ask about financial assistance programs at the government level — resources exist that are not routinely shared with patients and families.
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Brad Power June 12, 2024 “As a nurse, I was the one to do the caregiver services. Having to be that person to navigate their care, knowing that there isn't any treatment available at the time of their diagnosis. I needed mental health services, but nobody offered it to me. ” – Rochelle Prosser “Some of the behaviors that you see are because of the drugs.
It's not that your loved one has changed, it's the drug that you're dealing with, and how to communicate best with that person while they're in that event.
Meeting Summary
Family members can make a huge difference in the outcomes of the care of their loved ones. How can you be an effective caregiver for your loved ones? What does an engaged caregiver look like?
Rochelle Prosser, RN, CLNC, founder and CEO of Orchid Healthcare Solutions, the Prosser Cancer Library, and founding member of the CancerX Moonshot, is uniquely qualified to be a role model as an exceptional caregiver to help family members navigate their care. She brings a special combination of (1) a professional background as a nurse (30 years), (2) her role as a caregiver to family members with cancer, and (3) her knowledge of data science.
Rochelle spent 15 years assisting multiple family members through harrowing cancer journeys. Her daughter was diagnosed at age 4 with a rare brain cancer. The standard of care had a very low success rate, so Rochelle did the research and pioneered an alternative treatment. After 10 years, her daughter achieved remission this year when most patients with a similar diagnosis don't live past 12.
Rochelle created Orchid Healthcare Solutions to give back and help vulnerable populations and communities of color navigate their oncological journeys so they have the care and resources she had to fight so hard to find. She didn't want anyone else to have to go through what she went through. She offers an approach to cancer survivorship, a software platform, and a decision-support system for clinicians.
She works with her patients and doctors, often explaining treatments to doctors that they may not know about. She also sits on a federal council on health IT. What are the challenges that caregivers to cancer patients experience in navigating the care of their loved ones?
•Knowledge to participate in care decisions : Lack of knowledge about the disease and testing and treatment options, access to trustworthy sources of information
•Treatment selection and access: Access to therapies (off label, reimbursement), acute Caregiver”
•Treatment selection and access: Access to therapies (off label, reimbursement), acute care in cancer treatment; managing comorbidities along with the cancer
•Effective communication with healthcare providers : knowing what you need to let the doctors know about, overcoming reticence to honestly share what you are experiencing
•Administration: Navigating the complex and dis-integrated medical and payment system Caregivers also face unique challenges:
•Emotional distress and anxiety : helping their loved ones overcome fear, trepidation, concerns about altered body image, the impact on relationships – for example, overcoming a family history where going into the hospital means you may walk in, but you're coming out feet first; maintaining a marriage with the stress of cancer
•Finding mental health resources (for the caregiver, as well as the patient) What can you learn from Rochelle Prosser’s experience as a very knowledgeable caregiver in navigating cancer care?
•Get mental health support as a caregiver : There are things that you have to negotiate within your marriage, within your parenting style, within civil engagement, with this individual who has cancer. Some of the behaviors that you see are because of the drugs. It's not that your loved one has changed, it's the drug that you're dealing with, and how to communicate best with that person. It's looking at it with a different lens, without blame. Most people don't know what to say when a loved one or a friend is diagnosed with cancer. There are tools, such as game cards to help the conversation, mindfulness tools, and tools to help your loved one get off the couch.
•Manage side effects aggressively : Exhaust all resources to stabilize the patient, then get restorative treatments
•Search for quality care : No two cancer centers are equal, and no two community centers are equal. What you will receive in these settings is based on the pharmacy formulary that they have contracted that will allow you to have access to treatments and therapeutics.
•Explore financial sources : There are plenty of resources out there at the government level that are not being shared. No one should have a seven figure medical bill. If you're 65 and older, they pay you while you have cancer. It's not a death benefit. You don't have to be disabled to receive it.
•Step back as a caregiver : Let your loved one be in the driver’s seat of their care. What should you do?
•Review the personal experiences of empowered and engaged caregivers and patients, like Rochelle Prosser, to provide guidance on your journey
•Work with your providers to make sure they understand your needs and priorities
•Connect with Rochelle Prosser for discussion about support options as you navigate your care decisions, especially if you are a caregiver The information and opinions expressed on this website or platform, or during discussions and presentations (both verbal and written) are not intended as health care recommendations or medical advice by Cancer Patient Lab, its principals, presenters, participants, or representatives for any medical treatment, product, or course of action. You should always consult a doctor about your specific situation before pursuing any health care program, treatment, product or other course of action that might affect your health. Meeting Notes KEYWORDS caregiver, daughter, drugs, patients, doctor, cancer, brain, prostate cancer, treatment, husband, nurse, surgery, knew, child, rochelle, room, journey, tumor, brain cancer, dealing SPEAKERS Rochelle Prosser (74%), Jeff Dwyer (14%), Brian McCloskey (6%), David Plunkett (3%), Brad Power (3%) SUMMARY Cancer patients and caregivers face challenges of managing cancer treatment and survivorship, such as needing emotional support, mental health resources, and effective communication with healthcare providers. Advocacy, access to quality care, and support systems for both patients and caregivers are important solutions. The personal experiences of caregivers and patients can provide guidance, for example, working with your providers to understand your needs and priorities, personalizing your care, and seeing examples of empowered patients and caregivers and interdisciplinary collaboration and knowledge sharing. OUTLINE Cancer patient experiences, navigating treatment, caregiver struggles, and relationship dynamics.
•Rochelle Prosser shares her personal journey as a nurse who became a caregiver for two cancer survivors, her daughter with a rare lung cancer and her husband with metastatic (stage IV) prostate cancer.
•In 2007-2008, her husband received tamoxifen and anthracite for prostate cancer, with a 100% cure rate after 3 doses.
•In 2014, her husband was diagnosed with a prostate cancer recurrence, which had metastasized to his bladder, despite previous treatment with vincristine and carboplatin.
•Her daughter was diagnosed with incurable brain cancer at age 4.
•Her daughter received similar treatments to her husband, including carboplatin and Temodar, but failed quickly due to increased brain swelling.
•Her husband was diagnosed with aggressive prostate cancer at the same time, and they had to navigate his fear, trepidation, and altered body image while also dealing with the impact on their relationship. Cancer treatment challenges and a mother's emotional struggle.
•She describes challenges of caring for a child with cancer while also working as a nurse.
•Her experience as a neural trauma ICU nurse helps her advocate for her daughter's care.
•She requests drugs to sedate Kayla, but becomes tired and her 10-year-old son takes over.
•Her children babysit Kayla while she sleeps, despite her volatile emotional state due to medication. Mother's 15-year journey as a caregiver, nurse, and advocate for her daughter's rare cancer treatment.
•Rochelle Prosser shares her experience with alternative medicine.
•Her husband needs surgery, but the doctor pushes it to September, causing concern for his health.
•Her daughter underwent various treatments, including an experimental drug that had promising results. Brain cancer treatment and care, with a focus on interdisciplinary knowledge and replicable clinical programs and cancer treatment disparities.
•Rochelle Prosser describes how her experience caring for a daughter led to the development of replicable clinical programs in chronic disease management.
•Her work with the National Institute of Health resulted in the adoption of their COVID outreach program.
•She reveals her experience of the variability between cancer centers and community centers.
•She advocates for access to resources and government protections. Cancer survivorship, caregivers, emotional support, and mindfulness.
•Rochelle Prosser discusses inadequate emotional support for cancer patients and caregivers.
•Caregivers need to understand and communicate with loved ones undergoing cancer treatment with empathy and patience, recognizing their changed state due to drugs, and avoiding blame.
•David Plunkett shares his experience with anger and emotional changes due to prostate cancer treatment.
•Rochelle Prosser emphasizes the importance of mental health support and community organizations for cancer patients.
•She shares her personal experience with communication challenges between patients and doctors.
•Her husband struggled to understand medical terminology, leading to frustration and a need for education.
•Her husband was hesitant to discuss his medical concerns, so she took steps to help him become the driver of his own care.
•She reflects on the challenges of being a caregiver, including not being afforded the opportunity to simply be a wife or mom, and the need to rebuild trust in her relationships. Prostate cancer treatment options and challenges.
•Jeff Dwyer shares his experience with prostate cancer, including his journey with radiation treatment, and his personal struggles with comorbidities and drug side effects.
•He seeks advice on managing end-of-life care and finding adequate care and support for his cancer treatment.
Full transcript
Brad Power Welcome to another meeting of the Cancer Patient Lab. This is a weekly series where we have honored guests who lead us in a discussion. Today that's Rochelle Prosser. I'll introduce her in a minute. This is not medical advice. This is for information purposes only. We try to arm people with information they can take to their medical team. We are a patient-led, all volunteer community, and we would welcome any donations of time or money.
A quick intro to Rochelle: Rochelle has an amazing story of her cancer journey with her daughter, husband, and father. She's a nurse by training, and she's been in the patient navigation space for some time, helping people navigate cancer and applying the lessons that she derived from her experiences as a caregiver to her daughter and husband, as well as her nursing background. She is based in Miami Gardens, Florida.
Rochelle Prosser
I am the spouse, mother, and daughter of cancer survivors. My husband is a two-time cancer survivor of lung and prostate cancer. My daughter is a long haul cancer survivor in brain cancer.
In total, it has been 15 years that I have dealt with direct family involvement with cancer, as well as now I am navigating my father who has been diagnosed with metastatic stage four prostate cancer to the bone, the lungs, the heart, and the lymph nodes. It is rather devastating news. But he's still around. He's still kicking. OJ Simpson recently passed away, and my father is still trucking along.
It is due to certain medical technology advances that are available, but he is in a different country, and is not afforded all that we are able to have here in the United States. Navigating that minefield for oncology tourism is something I never thought that I would be in. But here I am today dealing with that. My journey began with my husband.
At the time they were giving tamoxifen and anthracicline for lung cancer patients way back in 2007 and 2008. There was this wonderful new treatment coming out with vincristine (chemotherapy), carboplatin, and cisplatin (platinum-based drugs), that had a 100% cure rate after three doses.
We had to make a choice very quickly after having a lobectomy to remove the actual cancerous portion of his tumors of his lung cancer and decide whether we should go at it at a stem cell level. Or do we just say, “Take the win. He's had the surgery.
” The data showed that even though you did the lobectomy and had the surgery, you still had a resistance rate of about 67% to 80% in African Americans, so we chose to go ahead with the platinum-based drugs. After three doses, he was fine. That was in 2008. We got to the five year mark, and in 2014 he was diagnosed with prostate cancer, which is one of the secondary cancers that can evolve from platinum-based cancers.
The other ones are retinal disease or a retinal detachment in the eye. But at the time, we didn't know that that was a possibility because no one knew what these drugs and their side effects would hold. When I looked back at his PET scan, you could see it right there. His whole bladder lit up like a glow worm. It was so bright, it overshadowed his prostate. But at the time, it was hot too.
I'm not sure if he had a single source, or he already had metastatic disease when we treated his lung cancer, but the vincristine and carboplatin certainly helped to delay the symptoms of his prostate cancer. He had adenocarcinoma of the prostate, which was extremely aggressive.
The only option he really had at the time was surgical removal, because the immunotherapies that were just coming through bore out that it didn't work in the African American population. There just wasn't enough evidence at the time to say that that was a good choice. They already knew that the radiation treatment didn't work with African Americans, because at the time, they were doing Gamma Knife and photon beam.
What people needed was proton beam radiation. That wasn't even developed in 2014. He didn't tell me that he had prostate cancer in January of 2014. My daughter was diagnosed in March of 2014, just after she turned four, with primal myxoid astrocytoma of the brain. We always wondered if that was a fallout from him, from my husband receiving platinum-based chemotherapy, which we now know, it wasn't.
It was truly just a fluke of the germ cell development of the brain. But we know this now, but at the time, I had a lot of parental guilt in saying, “My husband took this treatment, and maybe we had children too soon. ” I lived with that a lot, knowing that my four-year-old was diagnosed with this incurable disease that was through the optic nerve. It was in all the cellular regions of the brain. It was in the third ventricle of her brain.
It went through the pons, which is the brainstem. And it went through the hind.
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