1-on-1 Patient Navigation & Advocacy Services

Knowing: A Cancer Diagnosis Short Story

by Coral Kelly Ragognetti

When the doctor’s office rang eight minutes into the procedure, my heart didn’t sink. I was pleasantly surprised to know it was complete and he would be awake soon. We’re done!

“OK. Will do. Thank you.” I turned the car back off and hustled inside. 

“I’m Mrs. Ragognetti. The doctor called me in to let me know my husband is done.” 

“Sure thing. They’ll come grab you through that door shortly.” She gestured to the right. 

I bet he’s starving. We should get some food.

I stood reading HIPAA disclaimers and workman’s compensation posters until the door clicked and a woman greeted me by name. 

“Yes.”

“Right this way, ma’am.” 

I followed her to a side room, not quite an office, more of a cubby with two chairs, a desktop built into the wall, and an open laptop. She introduced herself as the gastroenterologist who performed the scope.

“It’s nice to meet you,” I replied with optimism. 

She looked up at me as I clutched my purse and jacket on my lap. “It’s not good.” 

I loosened my grip. “Oh. Okay.” The words took ages to leave my mouth. 

“He has cancer.” A beat. “The tumor is large. So large, in fact, I didn’t complete the colonoscopy. I was unable to maneuver past it.” 

She turned a stack of papers toward me. Full-color photos elucidated her point. Snaps of pink polyps were positioned toward the bottom of the page, while the top portion was mired with crimson, bulbous tissue filling every visible space in the colon.  I filed through each finger on my left hand, nervously clicking my thumb nail under each nail. 1, 2, 3, 4. 1, 2, 3, 4. 

“It’s located about 10 centimeters from the rectum, in the sigmoid section of the colon.” 

“Okay. Um. Do you—uh—what do we do now?” Under the cover of my mask, I rolled my lips through my teeth, biting and releasing. Cancer? 

“Surgery will likely be the next step. You’ll need to find a good colorectal surgeon who’s covered by your insurance.” 

“I don’t know of any. Are there any you can recommend? Or maybe even ones you wouldn’t recommend so I can rule them out?” 

She smiled. “Of course, here are two I know of and trust.” She scribbled their names on the back of the packet. “And this one, I won’t write anything more but maybe find someone different.” She scrawled the third name at the bottom of the page, barely legible. 

“Okay. I’ll start calling.” I nodded slowly, dutifully, still looking down at the printed pages. A pinch in my chest stole my breath. I looked up. “Have you told him yet? Is he awake?” 

“He should be waking up now.” She slid the colonoscopy report closer to me. “You hold onto this. Let’s go see him and let him know.” The energy in her movements was unexpected, and I was in no position to mirror her spirit.  

Let him know. He doesn’t know. Can’t she just—. No, Coral. Knock it off.  I drew in a jagged breath but let it escape more smoothly. I’d want to hear it from him. 

I had yet to stand but she was two paces ahead when she turned and said, “he’s going to be okay. We will get this out of him and he will be fine.” Another stuttering inhalation. Will he? 

She motioned to a curtained partition and I followed her in, standing at his feet. The anesthesia left his eyes glassy and his lips dry and pursed, but he was awake and looking at me. I steadied myself at his feet with fingertips on the bed railing. 

“Hey baby. How are you?” My greeting was soft and warm, but monotone. I sucked on my tongue. I need water. 

“I’m good,” he muttered. “Everything go okay?” His eyes darted back and forth between his doctor and me. The mask hid my quivering chin, but he could see my eyes. It’s not good, babe. You were right. It is cancer. You have cancer. Don’t freak out. Don’t cry. It will be okay. I said nothing. 

His doctor tried to answer his question. “Well, we found something in there. It’s not good. It’s quite large and…”

I don’t know if either of us were listening at that point. We locked watery eyes, and I shook my head, ever so slightly, back and forth. Can you hear me? He was grasping to understand. I felt a pain building behind my right eye and tried to blink it away. 

“Is it cancer?” He didn’t want to dance around. Use the word. He can handle it. 

“Yes—" I broke in. Softening my face, I continued. “It is, but you’re going to be okay, babe. You will. We’ll figure it out.” I gently squeezed his feet through layers of medical blankets, sheets, and non-slip socks. 

His eyes filled more, and he pressed his cheek into the right side of his pillow, away from us. His hands were balled against his chest—trapped beneath the blanket and this new information. 

“There’s a possibility it’s been in there, growing, for many years. I’m glad you came in. I’m going to order a CT scan so we can get a better look and check for any spread.” 

“Can we get the imaging done today instead of waiting? I’d really like to get moving on this now if we can. We’ll drive wherever,” I offered readily.

She agreed without hesitation and promised a same-day scan if we were willing to wait an hour or two, which we undoubtedly were. 

“I’m going to get this imaging order in, and Rachel will be by soon to check on you. And hey,” she put her hand on his left shoulder. “You’re not going to die. You’re young and healthy and you will be okay.” I tried to buy it. I’m not sure he did. 

The doctor slipped away through the overlapping curtains, and we were finally alone for a moment. I leaned down to hug him and kiss him, and we silently released the first of many tears into each other’s shoulders. Rachel arrived shortly thereafter and directed us to a pair of chairs about fifteen feet away, along the edge of the room, facing the nurses’ station, patient rooms, and recovery beds. We had a box of tissues and a warm blanket, but no privacy to grieve or discuss what we needed to do next. No educational materials to bring us up to speed or help us understand. No point person to guide us. 

The chairs were situated between a collection of half-folded wheelchairs and an emergency exit, perfectly positioned to watch the coming and going of patients and healthcare providers, from reception to pre-op preparation, from procedure to recovery, and from recovery to the patient exit. Our route was different. We were stranded on the shoulder, not moving forward nor fighting the delay because neither of us had an idea how to inch ahead, while those with more certain futures whizzed by us. Must be nice. 

There wasn’t much we could comfortably say out in the open, yet there was so much to do. The noise in my head was rushed, jumbled, incomprehensible, like the fast-forwarding of a cassette tape. I could feel a compulsion to spring into action, but our next moves were still undefined. It appeared our first assignment was to sniffle, whisper, and feign comfort as patient and provider passersby offered us looks of pity, concern, and curiosity. In the past, I had been offered more privacy to breastfeed or blow my nose than my husband was afforded to process his new cancer diagnosis. He doesn’t deserve this. 

Sterility is an unsettling scent—all surfaces stark and stripped of life, the air sharp and sanitized. I hadn’t noticed it earlier that morning, but the pungency seemed to be intensifying. It was a nostril-stinging, “chemical clean” that offered no comfort. I needed a reprieve. I pulled myself away from him to return to my car and make a few dreaded and completely unexpected calls to our families, advising them to pull over, sit down, and be patient with me as I tried to communicate through tearful, labored breathing. He has cancer. 

“He’s the same age Dad was when he was diagnosed,” I confessed to my sister. “He’s 41. I can’t. What the fuck is this?!”

“Don’t go there. Slow down.” She thoughtfully paused between each sentence. “It’s not the same. He will be okay, sweetie. Just let us know what we can do to help you guys. I love you—both of you.” 

I will never forget making those calls. 

Upon disconnecting, I stared straight ahead through my windshield, immoveable. Manicured shrubs, each a clone of its neighbor, lined the perimeter of the parking lot. Mature, pruned oaks erupted into the lineup every ten feet or so, unfaded mulch hugging the base of the trunks. A grassy median boasted a recently painted marquee. Someone takes good care of this place. Dust on my dashboard. Smudges on the glass. Crumbs in the cupholders. I have to go back inside. 

Rachel assured me that she’d stay close to him in my absence, and when I returned, he was right where I left him, expressionless and despondent, seated in the this-guy-got-terrible-news-today chair. 

“Babe, you’ve been crying.” My puffy, red eyes and splotchy skin gave me away. 

“Just a little bit. It’s okay,” I pretended. 

“So, how’d they take it? Everyone okay?” This guy is such a sweetheart. 

“About how you’d expect. And, yeah. Everyone is fine, just a little in shock, ya know?”

“Yeah. I know. Same here.” He leaned his head back against the headrest and closed his eyes. 

Me too, babe. Me too. 

We didn’t talk much after that. We had plenty to say to each other, but the words didn’t come. The two of us just sat and stared straight through the activity around us. Shouldn’t we be the ones whizzing around getting things done? But getting what done? We were freshly minted hostages, locked in place and exposed to everyone, our fear and inexperience rendering us motionless. 

I ran my fingertips through my hair and traced the imperceivable bumps and divots on my scalp. Rhythmically. Repeatedly. My nails dragging ever so slightly. I did this when I was tired. Or thinking. Or nervous. I was all of these. I opened the browser on my phone and typed in colon cancer surgeon near me. The results populated though they meant absolutely nothing to me. I didn’t know any of them nor did I know if they accepted our insurance. Next, I searched the names of the surgeons the gastroenterologist shared and called both offices only to reach their lunch-hour away messages. Great. I returned to Google and attempted several other search terms, but the information remained insufficient. I closed the window and texted my sister. Can you help me find a surgeon? This is fucking ridiculous. I dialed the 1-800 number on the back of my insurance card. 

“My husband was just diagnosed with cancer, and we need to find colorectal surgeons who are in-network for our plan. Can you help me?”

***

Our Experience from the Kids' Perspectives

When I asked my 10-year old about what he remembered from our "Dad has cancer" talk a few years ago and what helped him/may help other kids, he shared the following with me: 

• Make sure you have already gone to the doctor and that you know as much as possible about the cancer before you tell the kids.
• Explain where in the body the cancer is, what effect it has on the body, and why it's bad news.
• Let them know that they cannot "catch" cancer from their parents and they can't "spread" cancer to people at school. It's not like that. 
• Talk to us about the type of treatment Dad (or Mom) will be receiving to get rid of the cancer, what it will be like at home, and how we should expect mom/dad to feel and look. What will be done to them to get rid of the cancer? Will they be in pain? How does the medicine or treatment work? How will they be feeling at home? Will they still be able to do/play ______ with me? Will they lose their hair? Will they have surgery that makes it hard to move around for a while? Will they be sad or upset a lot?
• Tell me what I can do to help so I don't feel helpless.
• Tell them they cannot touch the medicine (chemo pills), no matter what.
• Keep me included in the updates so I don't feel left out. I want to celebrate all the good stuff with him, too. 
• Keep living your life (as a kid) as normal as you can. Do your activities and sports and stuff that makes you happy. It's okay for you to still have fun. It's important to still be a kid, ya know? 
• Most importantly, tell your kids that their mom or dad will likely BE OKAY (if it's a treatable cancer) or that it might be harder to make them okay because some cancers are rare or "mean," but that there is a lot of good medicine out there to try. He added that if you don't think it will be an easy cancer to treat, then don't tell them anything like "they will be okay FOR SURE." Be gentle, but be real. 

He was 8-years old when we had our conversation and his little sister was only 4. He seemed to realize the immensity and intensity of what was going on right off the bat. He was tearful and had a lot of questions in that first sitting, including "but will Daddy still be able to work?" because he knows his dad loves his profession. His innate empathy was on full display that day and we were (still are) so proud of how he handled everything. He wanted to understand the science and what was going on in Dad's body, and he memorized his specific stage, cancer type, and what treatment he was having so he could talk about it knowledgably at school. He was proud to be able to talk about it in that way, and he continued to ask questions and check in with Dad on a regular basis and still does today. In fact, Dad just reached 18 months NED (no evidence of disease) and each kid was stoked to run up and congratulate him. It was a pretty special moment. 

The little one's response at the time was a bit different than her brother's, as is to be expected. She said something along the lines of "well, I'm not going to cry," and she stuffed it all down deep. She didn't have any immediate questions, and she sat on the couch looking at her dad, brother, and mother crying almost as if we were all overreacting and being dramatic. About an hour later, she was playing in her room and I popped in to check on how she was feeling. Her only concern in that moment was "am I going to get cancer in my tummy, too?" Ugh, heartbreaking. Unfortunately, Dad's cancer was due to an inherited gene mutation called CHEK2 which does increase her and her brother's chances of developing breast or colorectal cancer, but we didn't share that piece of information right away. (We have since shared it and let them know that when they are each 18, we will go to the doctor for a test to see if they have the same "cancer blueprint" and if they do, all they have to do is get special tests, called screening tests, at an earlier age.) Over the next few days, we noticed she was irritable, quiet, and removed from the normal chaos of our home. It was clearly bothering her, but she didn't have the words or the tools to express it. We continued to bring up the topic as a way to open the door for questions and normalize talking about cancer and, with time, she opened up, asked questions, and starting sharing her emotions. She's 6 now and recently came up to me and said, Mommy! You never told me that kids could get cancer, too! I thought it only happened to grown-ups." So I guess I didn't fully educate her in the way she wanted. Can't win 'em all. 

We also informed the kids' teachers by email after this conversation so they were aware of what was going on, what the kids knew, and to ask if they could keep an eye out in case either of them seemed to be having a hard time at school. 

It felt like an impossible conversation to have, but I can say the anticipation was worse than the actual talk. I think we put a lot of unnecessary pressure on ourselves to do everything "right," especially considering we had only known the diagnosis for a short period of time before we told them. I didn't need the script I was frantically searching for; I just needed to sit down and simply talk to my kids how I normally would. Please be more gentle with yourself than we were. Look at it more as "introducing a new topic of conversation" as opposed to "I have to cover everything right now." There are too many emotions involved to get this perfect in one sitting, if at all, especially on the heels of a fresh diagnosis. If you don't feel ready to have the conversation, you can certainly wait until you feel better prepared, though you'll likely never feel "totally ready" because it's a sh*t conversation that NO ONE wants to have. Ease into it. 

~Hugs~

There are more resources on this topic at the bottom of the Newly Diagnosed page to help you find the approach that is best for you and your family, including a long list of children's books that tackle cancer. 

Advocates and Allies: The Pioneers of Progress (NCI)  Cancer advocates have a long history of making sure patients' voices get heard. In fact, one notable advocate had a major role in making the National Cancer Act a reality. Meet these not-so-silent allies of yesterday and today who challenge the status quo, push for progress, and accelerate change in the world of cancer.

https://www.cancer.gov/news-events/nca50/stories/cancer-research-advocacy

Being a Cancer Advocate (Cancer.net/ASCO)

https://www.cancer.net/research-and-advocacy/patient-advocates/being-cancer-advocate

Cancer Advocates & Navigators (CancerChoices) Having guides who have the cancer equivalents of a map, a compass, and knowledge of the territory—plus compassion—can be very helpful. Even well after a diagnosis, guides can continue to provide much needed information and support.

https://cancerchoices.org/resources/cancer-handbooks/how-to-integrate-your-choices/advocates-navigators/

An Overview of the Profession of Health & Patient Advocacy (APHA) The healthcare system has changed to the point where it is no longer recognizable. As patients become more fearful they aren’t getting the care they need, or are being asked to pay more than they can afford, they and their caregivers are increasingly reaching out to private, independent patient advocates for support. The benefit to both patients and caregivers is peace of mind, and the ability to put their efforts toward healing, or supporting their loved one who needs care, knowing a professional is handling the important details.

https://aphadvocates.org/profession-overview/

The Benefits and Burdens of Patient Advocacy (ASCO) Patient advocates share their time and experience to improve cancer research, care, and support. Advocacy can be rewarding and empowering, and survivors and caregivers express a variety of reasons for engaging in advocacy. Yet, advocacy can also come with mental and emotional costs. Challenges include the grief of losing friends to cancer, the related “survivors’ guilt”, and the burden of repeatedly reliving their experience. The National Coalition for Cancer Survivorship (NCCS) conducted a survey to better understand the experience of patient advocates, and actions that organizations can take to recognize and support advocates.

https://ascopubs.org/doi/10.1200/JCO.2020.39.28_suppl.204

Why Healthcare Advocacy is Important (Tulane University) Today’s complex healthcare system is increasingly fragmented. Patients see multiple specialists and scramble to keep track of treatment plans. Confusing medical bills and insurance coverage pose challenges to even the most informed patients. Healthcare advocacy can play a vital role in easing the burden patients experience while navigating the healthcare system.

https://publichealth.tulane.edu/blog/healthcare-advocacy/

What is a Patient Advocate? And What Do They Do? (Coursera) The health care system can be confusing and overwhelming, especially when a patient is also dealing with a scary health diagnosis. A patient advocate works as that person's guide, but they're more than that. The Institute for Healthcare Improvement calls patient advocates supporters, believers, sponsors, promoters, campaigners, backers, and spokespeople.

https://www.coursera.org/articles/patient-advocate

What Is a Patient Advocate, and How Can They Help Me? (GoodRx Health)

https://www.goodrx.com/healthcare-access/patient-advocacy/patient-advocate-alternate-options

What Does it Cost to Hire a Patient Advocate? (Umbra Health Advocacy) Independent advocates work for you. You hire them like you would hire an attorney. That means their loyalty, or allegiance, is to you. It also means you pay their fees out of your own pocket. That may sound like a negative, but there’s an upside of paying the bill. It means the advocate answers to you, not to the hospital, clinic, or health insurer. It means they put your interests first. When you or a loved one is the patient in a complex healthcare situation, you want someone you know is on your side with no conflicts of interest. Independent advocates are not usually covered by insurance. So you need to be prepared to pay for these services on your own.

https://umbrahealthadvocacy.com/what-does-it-cost-to-hire-a-patient-advocate/

The power of patient advocacy in cancer care (BI)

https://www.boehringer-ingelheim.com/human-health/cancer/power-patient-advocacy-cancer-care

Patient Navigation in Cancer Care (ACS) The cancer navigator connects a person with cancer with the help and support they need. The goal of cancer navigation is to find ways to overcome issues that keep people from getting access to quality cancer care.  For example, navigators might help someone get a cancer screening and make sure that people who have abnormal test results get a follow-up visit. Or, the cancer navigator might help someone with cancer learn more about their cancer and its treatment. A cancer navigator might also help them manage money problems that come up during and after treatment. 

https://www.cancer.org/cancer/patient-navigation.html

The Benefits of Patient Navigation (JONS) Coping with cancer is an immense and complicated burden for cancer patients and their loved ones. When someone hears the words, “You have cancer,” the most imminent need is information—about the specific diagnosis, the treatment options, treatment side effects, available resources, insurance coverage, and so much more. The complexity of the cancer care journey, coupled with the life-threatening nature of cancer and its emotional repercussions, makes it difficult for people with cancer to make decisions about their care. Whereas information can offer hope and serve as a very empowering tool for newly diagnosed cancer patients, they and their families are often overwhelmed by the avalanche of materials, resources, forms, procedures, and complex medical information they receive in the days and weeks after the initial diagnosis.

https://www.jons-online.com/issues/2018/october-2018-vol-9-no-10/1998-the-benefits-of-patient-navigation

Patient Navigators Can Help When Life Disrupts Cancer Care (ACS)

https://www.cancer.org/research/acs-research-news/patient-navigators-can-help-when-live-disrupts-cancer-care.html

Triage Cancer Legal & Financial Navigation Program provides individuals diagnosed with cancer, caregivers, and health care professionals with free one-on-one help in the areas of health insurance, disability insurance, employment, finances, medical decision-making, estate planning, and more. We are trained to help you find your way – or navigate – through the legal, financial, and practical barriers that you face as you access care.

https://triagecancer.org/legal-and-financial-navigation-program

F*ck Cancer CareLine provides personalized cancer navigators for people with cancer and their caregivers to help with financial & insurances resources, employment and legal protections, understanding medical paperwork, applying for social services, locating support groups and mental health professionals, finding second opinions, learning about cancer and treatment, and understanding fertility options. 

https://www.letsfcancer.com/program/careline/

Imerman Angels- Find a Mentor Angel No one has to face cancer alone. Through our unique matching process, Imerman Angels partners individuals seeking cancer support with a Mentor Angel – a fighter, survivor, previvor or caregiver – who has been in their shoes.

https://imermanangels.org/find-mentor-angel/

Cancer Support Community We offer free navigation for cancer patients or their loved ones. Call our Helpline at 888-793-9355. 

https://www.cancersupportcommunity.org/navigating-cancer

Chrysalis Initiative Chrysalis Cancer Coaching Curriculum is designed to ensure a patient’s knowledge of a comprehensive model for optimal cancer care. One-on-One Coaching exists to edify and empower patients through their treatment, helping them to feel confident and in charge by managing the worries and challenges particular to their journey. Our one on one coaching is tailored to your individual needs based on where you are in your breast cancer journey.  You don’t have to do this alone.

https://thechrysalisinitiative.org/one-on-one-coaching/

FORCE (Facing Hereditary Cancer Empowered) Our free Peer Navigation Program connects cancer survivors, people at high risk and their caregivers to support and resources personalized for their situation. This program is for individuals who have just learned about their hereditary cancer risk as well as those who have known about it for many years. Personalized and Confidential Support. Based on the information you submit through a secure survey, you'll be matched with a trained Peer Navigator who shares a similar experience and "gets" your situation for a phone call or email exchange.

https://www.facingourrisk.org/support/peer-navigated-pathways

The Lazarex Clinical Trial Navigation Program Our Patient Navigator can help you find the right clinical trial. We can also help you with the costs associated with participating in a clinical trial.

https://lazarex.org/helping-you/looking-for-help/

American Cancer Society Reach to Recovery Through our website and mobile app, you can create an online profile and match with a volunteer who has experienced a similar type of breast cancer, stage, and treatment. Within seconds, the Reach To Recovery® website and app compare your information and preferences to volunteer profiles and identify the best volunteer matches for you.  You can also choose how you want to connect one-on-one with a volunteer – through online chat, a phone call, or exchanging messages. Volunteers can answer your questions and provide one-on-one support to help you cope with treatment, side effects, talking with friends and family, working during treatment, and more. 

https://www.cancer.org/support-programs-and-services/reach-to-recovery.html

https://reach.cancer.org/

ACS CARES™ If you or someone you love has been diagnosed with cancer, deciding what’s next can be overwhelming. ACS CARES™ (Community Access to Resources, Education, and Support) equips those facing cancer with curated content, programs, and services to fit their specific cancer journey.

https://www.cancer.org/support-programs-and-services/acs-cares.html

American Cancer Society Cancer Information Services Cancer information, answers, and hope. Available every minute of every day. 1-800-227-2345. Whether it’s the middle of the afternoon or the middle of the night, our cancer information specialists are here to help. Have questions about treatment options or potential side effects? We have you covered. Need a ride to chemo or a place to stay when treatment is far away? We can help. Even if you just need a friendly ear, we’re here to help and can assist in more than 200 languages (via a language line) – 24 hours a day, 7 days a week.

https://www.cancer.org/about-us/what-we-do/providing-support.html

Livestrong Cancer Navigation Hearing the words “you have cancer” is the start of a what can be an emotionally, physically and financially challenging journey. Livestrong Navigation can help. We offer free, confidential and personalized support to patients, caregivers and anyone affected by cancer now. You will be matched with a Personal Cancer Navigator. Your Navigator will address your needs. Your Navigator will be with you every step of the way.

https://www.livestrong.org/we-can-help/livestrong-navigation-b

Crossroads4Hope We are THE safe space where people turn first to restore one’s whole being and family. Our network embraces all people touched by cancer — the diagnosed and their loved ones — to become empowered to take control of their health and care, through programs of support, resources, education, wellbeing, and hope. All our programs and services are delivered at no charge to people with cancer, survivors, loved ones, caregivers, and bereaved.

https://crossroads4hope.org/

Patient Advocate Foundation’s Personalized Medicine CareLine provides free and confidential navigational assistance with financial and practical challenges that impact your ability to access healthcare. 

https://personalizedmedicine.pafcareline.org/

CancerCare Resource Navigation CancerCare provides free telephone resource navigation to people living with cancer, post-treatment survivors and caregivers affected by cancer. CancerCare’s Resource Navigation services are provided by professional resource navigators and oncology social workers. This service is available in English and Spanish and centers on the practical challenges that arise from cancer. Call us at 800-813-HOPE (4673) or email info@cancercare.org

https://www.cancercare.org/resourcenavigation