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(This blog post is also available in Spanish, found here . ) When my brother was diagnosed with a carotid body tumor in 2005, we felt as though we had collectively dodged a bullet. We were told the hard mass in his neck which we feared could be cancerous was benign, and the only lasting concern was the damage done to his vocal cords during surgery—unavoidable due to the tumor’s size and location. Years later, similar tumors were found in my mother’s neck and abdomen, yet the connection between their medical histories wasn’t obvious until she had a heart attack caused by a mass near her adrenal gland and received an ominous diagnosis: pheochromocytoma. “The Great Mimic” Pheochromocytomas (pheo, pheos, or PCC) and paragangliomas (para, paras, or PGL) are rare neuroendocrine tumors which form primarily along the sympathetic nervous system. Approximately 80-85% of these tumors are pheochromocytomas, and 15-20% are paragangliomas. Paras (also called extra-adrenal pheochromocytomas) form near certain blood vessels and nerves outside the adrenal gland and are most often found in the head, neck, and abdomen. Like other neuroendocrine tumors, they can be functional (hormone-secreting) or non-functional. Pheochromocytomas are found in the inner layer of the adrenal gland (referred to as the adrenal medulla). Though pheos are notorious for the large amounts of adrenal hormones they can produce, any paraganglioma – particularly those found in the trunk of the body – can become functional, releasing potentially life-threatening bursts of epinephrine or norepinephrine. When they are functional, diagnosis is hampered by the fact that the symptoms they cause can easily be explained by other, more common, health conditions. These symptoms include: Headache Dizziness Palpitations/rapid heartbeat Hypertension (high blood pressure) Sweating Flushing Anxiety A feeling of impending doom. All in the Family Though described in medical literature since the 1800s, pheo/para have only recently begun to lose some of the mystery and mythology which surround them. Phrases like “Rule of 10s,” the “10% Tumor” or “One and done” have been relegated to the past. A growing body of research into pheo/para has provided doctors and patients with new and badly-needed information which has, in turn, had a profound effect on the diagnosis and management of these tumors. Some of the most important findings center around heritability, or the extent to which a disease is attributable to inherited factors. Long thought to be inherited in only ten percent of cases, pheo/para is currently referred to as “the most heritable tumor in humans.” While that might sound a little scary, our family found the identification of our mutation/syndrome to be oddly empowering --- enabling us (and our healthcare team) to fight an enemy we knew, instead of a mysterious and unpredictable foe. Those diagnosed with pheo/para should be aware that Roughly 40% of pheos/paras arise due to inherited genetic mutations; this number increases to greater than 50% among paragangliomas which are found in the head and neck To date, roughly 20 genetic mutations, associated with a dozen genetic syndromes, are implicated in the formation of pheo/para. These syndromes include: Multiple Endocrine Neoplasia type 2 syndrome types A and B (MEN2A and MEN2B) Von Hippel Lindau Syndrome Neurofibromatosis type 1 Familial Paraganglioma Syndromes 1-5 Carney Triad Carney-Stratakis Dyad Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC). Due to the high rate of inheritance, risk of recurrence, and association with other cancers, current guidelines advise that all patients diagnosed with pheo/para be referred to a genetic counselor and be followed yearly for at least ten years after diagnosis. Rare, but Not Alone As the global community of pheo/para warriors has grown over the years, advocacy groups have formed to help support them, their families, and caregivers. In addition to providing a wealth of resources on pheo/para and related syndromes, they offer help in finding a doctor, provide peer-to-peer support via remote meetings, sponsor conferences and other events for patients and their families, and provide education and resources for healthcare providers. A rare diagnosis, especially one associated with tumors/cancer, can be overwhelming and a little isolating. If you’ve been diagnosed with pheo/para, there are people around the world waiting to help you navigate this journey. The following is a partial list of pheo/para patient resources. For a more complete list, please visit the Pheo Para Project Resources page . Pheo Para Project Pheo Para Alliance VHL Alliance AMEND PHEiPAS Learn more about Pheo Para Awareness Week by clicking here. Help promote awareness among healthcare providers by participating in the Six Month Challenge to Change the World ! MEET AIMEE POWELL Aimee Powell's involvement with the NET cancer community has its roots in her work as a caregiver for family members diagnosed with pheochromocytoma and paraganglioma. She has worked in an administrative capacity with nonprofits since 2005, and as a professional communicator for over twenty-five years. After her brother's death from malignant paraganglioma, she dedicated herself to raising awareness of para/pheo, and to assisting patients with these rare tumors. Aimee is the founder of the Pheo Para Project, past Executive Director of the Pheo Para Alliance, and currently sits on the board of directors for the SDH-Deficient Cancer Research Advocates. Aimee is also a LACNETS NETCONNECT mentor. She lives in the Greater Los Angeles area.

We all have bad days. Some days are especially bad. Getting out of bed feels like a chore. Favorite foods are unappealing. Activities that usually bring joy instead fail to bring their usual spark. There’s a dark cloud that just won’t go away. Sometimes these days stretch out to weeks or even months. Dark seasons are not unusual. Living with cancer is emotional. It’s normal to experience feelings of sadness or depression. It might stir up such feelings for the very first time, or it might uncover or worsen depression that was already present. Sadness normally comes and goes. Depression, on the other hand is more constant and problematic. Clinical depression is when someone experiences five or more of the following symptoms every day for more than two weeks, if the symptoms are severe enough to interfere with day-to-day activities. SYMPTOMS OF DEPRESSION : Sad or “empty” mood almost every day for most of the day Loss of interest or pleasure in activities that were once enjoyed Eating problems (loss of appetite or overeating), including weight loss or gain Sleep changes (can’t sleep, early waking, or oversleeping) Tiredness or less energy almost every day Other people notice that you’re restless or “slowed down” almost every day Feelings of guilt, worthlessness, and helplessness Trouble concentrating, remembering, or making decisions Thoughts of death or suicide, or attempts at suicide Wide mood swings from depression to periods of agitation and high energy Although NET patients typically have a better prognosis than other types of cancer, the emotional toll of living with this chronic condition for many years sometimes leads to feelings of despair. Physical symptoms from carcinoid syndrome, interventions, or treatments might also trigger depression. On the other hand, depression may not be related to treatment, prognosis, or pain. It's possible to lose hope just by living with a medical illness for a long time. When there’s a lingering cloud of depression, it’s hard to see the light. Loss of hope can lead to despair and depression, and untreated depression might spiral out of control. Depression doesn’t discriminate. Even fame, fortune, or religion doesn’t guarantee hope. Celebrities aren’t exempt from this struggle that, untreated, sometimes leads to a tragic end. The suicides of comedian Robin Williams, fashion designer Kate Spade, and celebrity chef Anthony Bourdain shocked our world. We were also saddened to learn that popular SoCal megachurch pastor and mental health advocate Jarrid Wilson took his own life. September is National Suicide Prevention Month . This topic is often not spoken about. Quite frankly, it’s hard to talk about. But suicide is not the way to escape your emotional pain. You might have fleeting thoughts of suicide as a way to cope with feeling overwhelmed, stuck, or lost, but if you have persistent thoughts of harming yourself or are making plans to do so, tell someone right now .* It’s important to recognize and get help! Intervening and treating depression early can make all the difference. Living with cancer is a struggle with much loss. There may be loss of meaning, purpose, respect, dignity, body image, and relationships. Grief naturally leads to depression. In INCA’s 2016 global survey , 60% of the nearly 2,000 NET patients surveyed worldwide reported a negative impact of NET on their emotional health. Forty-eight percent reported a negative impact on the emotional health of those closest to them. It is not surprising that the 1973-2014 SEER data shows that those living with cancer have a higher risk of suicide than the general population. Untreated depression and unmanaged feelings of emotional distress can lead to despairing thoughts. However, interventions to alleviate suffering, improve connectedness, and maintain safety can diffuse this. Seeking help for yourself or someone you know can save a life! Watch & Warn : Below are some possible warning signs in someone who may be at risk for suicide, especially if the behavior is new, worse, or seems related to a painful event, loss, or change. If you or someone you know shows any of these signs, seek help by contacting National Suicide Prevention Hotline online, or call 1-800-273-TALK (8255). Talking about wanting to hurt themselves or end their lives Looking for a way to kill themselves, like searching online or buying a weapon Talking about feeling hopeless or having no reason to live Talking about feeling trapped or in unbearable pain Talking about being a burden to others Increasing the use of alcohol or drugs Acting anxious or agitated, or behaving recklessly Withdrawing or isolating themselves Showing rage or talking about seeking revenge Sleeping too little or too much Extreme mood swings Ask & Listen: You can help! [Click here to read an excellent NPR article about reaching out to help loved ones who are at risk.] By reaching out to ask and listen, you can break someone's isolation and build connection. Connectedness and community help to counter struggles with depression and suicidal thoughts. Ask for help! If you or someone you know is struggling with feelings of depression, despair, and/or distress, ask for help. You are not alone. Seek help from a mental health professional or your cancer team. American Cancer Society gives practical tips on what cancer patients and caregivers can do about depression. If you are concerned and want immediate help, contact the National Suicide Prevention Hotline online, or call 1-800-273-TALK (8255). If your loved one has made an attempt, call 911 immediately. LACNETS has written past blogs about coping and resilience: Making Friends with Change What Sparks Joy Marathon Training: Part 1: Understanding the Race Part 2: Strategy Part 3: Recovery BREATHE Don’t be afraid to ask if someone is having thoughts of wanting to hurt themselves. Research shows people who are having thoughts of suicide feel relief when someone asks after them in a caring way. Findings suggest acknowledging and talking about suicide may reduce rather than increase thoughts. Listen without judgment and with empathy. Don’t act shocked. This will create distance between you. Don’t debate whether thoughts or feelings are right or wrong, good or bad. Don’t lecture on the value of life. Allow and accept expressions of feelings. Offer hope that alternatives are available, but do not offer over-simplified reassurance. Connectedness helps! Join a support group! LACNETS offers weekly and monthly virtual support groups for patients and caregivers. Learn more here. Click here for a directory of NET support groups. Click here for a directory of online support and discussion groups. Social support has been identified by the Centers for Disease Control and Prevention (CDC) as a protective factor in relation to suicidal thoughts and behavior. Starting a conversation, providing support, and seeking help can save lives! Click here for more tips and resources. Take action! Never keep a secret if someone tells you about a plan to hurt themselves. Become available. Find ways to show interest and support. Protect the person by removing means such as weapons or pills. Get help from people or agencies specializing in crisis intervention and suicide prevention. *This article is not intended to address the controversial topic of physician assisted death (previously known as physician assisted suicide) or medical aid in dying. Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

You may have heard the buzz around clinical trials. Perhaps you’ve heard presentations on clinical trials. Or you may have heard talk of specific clinical trials. You may know of someone with a different type of cancer who tried a clinical trial as a “last resort.” Contrary to popular opinion, clinical trials may be considered at any time during your journey. Options range from first-line treatments for someone newly diagnosed to those who have already had multiple treatments. There are currently many clinical trials open for NET patients. This article explains why someone with NET may consider participating in a clinical trial. What are Clinical Trials? Clinical trials test the safety and efficacy of a treatment and strategies. They evaluate what works and doesn’t work. Clinical trials test to ensure a new treatment is safe and effective before it is brought to market and used in clinical practice. Clinical trials may also provide information about how drugs compare to each other. Clinical trials are conducted in a series of steps called “phases.” Each phase has a different purpose and helps researchers answer different questions. Phase 1: Researchers test a drug or treatment in a small group of people (20-80) for the first time. The purpose is to study the drug or treatment to learn about safety, side effects, and the maximum tolerated dose. Phase 2: The new drug or treatment is given to a larger group of people (100-300) to determine its effectiveness and to further study its safety. Phase 3: The new drug or treatment is given to large groups of people (1,000-3,000) to confirm its effectiveness, monitor side effects, and compare it with standard or similar treatments for the drug to be used safely. Phase 4: After a drug is approved by the FDA and made available to the public, researchers track its safety in the general population, seeking more information about a drug or treatment’s benefits and optimal use. For more on clinical trials, read this blogpost or watch this webinar . 5 Reasons to Participate in Clinical Trials: Clinical trials help the NET community. You have the opportunity not only help to yourself, but also to help the entire community. If successful, clinical trials help advance treatment options for others. You can help bring new treatments to market so they are available to all. Clinical trials can lead to important breakthroughs and discoveries. You can be part of shaping the future. You have the opportunity to contribute to moving the field of medicine into the future. (We all love moving the field of medicine into the future!) Clinical trials are an opportunity to advocate. Your participation in clinical trials is a form of advocacy. Participating in clinical trials is especially important in rare diseases where there may be limited research and limited treatment options. Clinical trial enrollment shows that patients are interested and willing to participate. Clinical trials must have inclusivity and diversity. It is important to include people from all backgrounds including race, gender, and age to give a better understanding of how treatments affect different people. This helps reduce biases, promote health equity, and produce more innovative science. Clinical trials may help you.* Clinical trials may give you access to new and promising treatments or combinations to see if they will work better than the standard of care. Depending on the phase and type of trial, you may receive the study treatment or the current standard of care. When you enroll in a clinical trial, you may also have extra medical attention from the research team with frequent check-ups and monitoring as part of your treatment. *The hope of a new or promising treatment often attracts people to clinical trials. While patients often seek clinical trials for their own personal benefit, it is important to clarify the difference between clinical care and clinical research: The primary aim of clinical care is to benefit the patient. The primary aim of clinical research is to gain new knowledge. The patient may or may not benefit. The benefit may be for future patients and for the NET community as a whole. Clinical trials drive medical advances. Clinical trial participation is essential to help us find answers and new treatments for NETs. In order for a randomized trial to go forward, each arm of the trial must be balanced, or have “equipoise,” meaning that there is a state of genuine uncertainty regarding the benefits or disadvantages of either arm of the trial. It would be unethical for a trial to not have equipoise. All clinical trials regardless of phase must be reviewed by an Institutional Review Board (IRB) to ensure that those that are entering clinical trials are protected. To read more about IRBs, please refer to the FDA description of IRBs and the Protection of Human Subjects in Clinical Trials . For randomized phase 2 or 3 trials, patients sometimes wonder if they can drop out of the trial if they are randomized into the control (standard of care, non-experimental) arm. To do so would waste costly clinical trial resources and could delay or halt the trial from completion. Without randomized clinical trials, new treatments could not come to market. So, while there is hope that the clinical trial may benefit the patient, the bigger reason to participate in the trial is to offer hope to the whole NET community. This is because clinical trials offer opportunities to help researchers find better treatments for others in the future. Clinical trials drive medical advances. Clinical trial participation is essential to help us find answers and new treatments for NETs. Consider how you might help the NET community by participating in a clinical trial. WATCH: NET patient Mary shares why she participated in a clinical trial Watch “Clinical Trials” featuring medical oncologist Dr. Daneng Li of City of Hope Watch “What’s New with NETs?" featuring medical oncologist Dr. Pamela Kunz of Yale Cancer Institute *Special thanks to Dr. Jaydi Del Rivero, Dr. Andrew Hendifar, Dr. Dan Li, and Josh Mailman for their contributions to this blogpost. *This blog post is for informational use only. LACNETS encourages you to discuss your individual needs and options with your medical team. Reference: NIH Clinical Research Trials and You Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

Our Executive Director, Kavya Velagapudi, has been working with LACNETS since 2015. Following the passing of LACNETS’ late founder and executive director, Giovanna Joyce Imbesi, Kavya stepped into the executive director role to help continue the LACNETS vision of supporting NET patients and their loved ones. Though Kavya isn't in the spotlight (i.e. visible in webinars and weekly support groups), she is our fearless leader. We asked Kavya a few questions to help our community get to know her, as well as her vision for LACNETS. Read the full interview below. HOW AND WHEN DID YOU FIRST BECOME INVOLVED WITH LACNETS? In 2015, Giovanna Joyce Imbesi, the late LACNETS founder, contacted me requesting support in writing a grant proposal. Anyone who met Giovanna knows it’s impossible not to admire and love her. Within a few months, we secured LACNETS’ first grant award. HOW HAS YOUR ROLE WITH LACNETS EVOLVED OVER THE YEARS? Giovanna and I continued to work over the years securing grants and donations to support the growing LACNETS programs. In 2017, Giovanna invited me to join the LACNETS Board. Between 2017 and 2019, I served as the Interim Executive Director while Giovanna focused on her health. When Giovanna succumbed to her disease in November 2019, I reluctantly took over as Interim Administrator since I was most familiar with the day-to-day operations and fundraising of LACNETS. What began as an interim role became permanent in 2021 when the Board and staff of LACNETS appointed me as the Executive Director of LACNETS. My work continues to bring me closer to incredible people like Giovanna whose vision is to change the world. WHAT EXPERIENCE DO YOU BRING TO LACNETS AND THE NET COMMUNITY? I’m an independent fundraising consultant and a grant writer with fifteen years of diverse experience generating revenue and resources for nonprofit organizations. I have a Bachelor’s in Psychology and a Masters in Social Welfare with a concentration in Non-Profit Administration & Policy Advocacy. Prior to focusing on administration and fundraising roles in nonprofits, I was a counselor at a domestic violence shelter and a homeless shelter. My previous roles include serving as the Western Region Director of Starlight Children’s Foundation in Los Angeles, and as the Development Director of the International Museum of Women, now part of the Global Fund for Women, in San Francisco. This experience helped me gain a unique blend of clinical, fundraising, and management skills. In 2014, I launched Honu Fundraising to work independently as a fundraising consultant, and a grant writer. Launching Honu Fundraising is the best professional decision I’ve made. My work continues to bring me closer to incredible people like Giovanna whose vision is to change the world. WHAT IS YOUR FAVORITE PART ABOUT BEING ON THE LACNETS TEAM? Our LACNETS team reminds me of Margaret Mead’s quote: “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” LACNETS is a small but mighty team. In November 2019, we were overwhelmed by Giovanna’s passing. LACNETS had no succession plan. It was hard to imagine LACNETS without Giovanna. Over the next few months, the current Board and staff came together to continue Giovanna’s work and vision. Nearly three years later, LACNETS is thriving! We reach ten times more patients and caregivers than three years ago. We continue to expand and add new programs to meet unmet needs in the NET community. This success is not possible without the commitment and expertise of people who serve on the GeneratePossibility.org/LACNETS Board and staff. WHAT IS YOUR VISION FOR LACNETS? My vision is to grow LACNETS to become a global resource center for NET patients and caregivers. We are well on our way to achieving this vision.

Kelli Edwards with her Husband A year ago, I wrote a post for the LACNETS blog entitled Cancer Thriver . At the time, I felt like a thriver, enjoying the break from Cancerland my treatment afforded. I was one of the first patients at Cedars-Sinai Medical Center to receive Lutathera PRRT, which gifted me with four progression-free years. Every six months, my husband and I skipped out of Cedars waving our “Get Out of Jail Free” card. I say “our” because whatever happens to me, happens to him. Seven months ago in March 2022, the dreaded “P” word haunted my MRI report: progression . “Irregular mesentery mass has mildly increased in size.” I knew this was inevitable, but it still felt like a gut punch. We decided no need for medical intervention yet, but the writing was on the wall. Over the next six months, a mild sense of dread set in. On most days, I was able to argue it away. Eventually, the mental gymnastics wore me down. It wasn’t the kind of traumatic grief I experienced when I was first diagnosed. This was more like a low-grade foggy depression that came and went. I was able to function and even enjoy myself at times. My mind often attributed everyday aches and pains to something more ominous. Gas pains were tumors. A pulled muscle was scar tissue forming. Stomach aches were pancreatitis. I started a “pain log” documenting the times, duration, and intensity of my discomforts. The log gave me peace of mind because I would have documentation for the doctor if needed. Also, the act of writing it down felt like it gave it validity. Nothing ever materialized into anything of significance, just little gnat-like thoughts buzzing in the background. Kelli Edwards with her Daughter Family events were also tainted by the fog. There’s a photo where I’m posing with my youngest daughter on the day of her “short coat” ceremony when she was initiated into a physician assistant program. I smile proudly, my arm wrapped around my high-achieving twenty-six-year-old. One part of me says, “You made it to see Aubree embark on her career!” Another part argues, “But what about her wedding day? Or the birth of her first child?” This bittersweet ebb and flow carried me back and forth between joy and grief. While most teachers live for summer vacations, this year was different. The calendar was inching towards September scans and without the distraction of work, I had more time to ruminate. My husband, middle daughter, and I decided we needed a vacation. We booked a trip to Wisconsin to visit family, including my ninety-six-year-old grandma. Grandma Elly is a character! She squealed with delight when my daughter and I surprised her at her little white house. A quintessential grandma house, it’s remained the same for as long as I can remember—a pink bathroom that smells like Dove soap, blue shag carpet, and end tables overflowing with family photos. Grandma fluttered around her white wig askew, dramatizing the story behind each photo. Suddenly, she stopped and grabbed my wrists with her translucent hands. Her mint green eyes sparkled and filled with tears as she said in a deep, wise voice, “Oh Kelli, I prayed and I prayed. You told me all you wanted was to see your three little kids grow up.” Then she pointed to my beautiful twenty-nine-year-old daughter, with matching green eyes, and squealed, “And now, look!” She grabbed both of us around the neck for a long hug. Kelli Edward’s Grandmother in conversation with her Husband After letting go, her face lit up with insight. “Now, Kelli, we’re gonna pray for grandkids. You need to see your grandkids.” Then she pointed to my daughter Cassidy. Cassidy’s face contorted, “No way, grandma! I’m not even married.” That’s when Grandma pretended not to hear. For the next ten minutes, she chased Cassidy trying to pray for her, while Cassidy ran away to dodge the prayers, yelling in protest. She knew how powerful Grandma’s prayers were. Kelli Celebrating with her Family Finally, after a lot of loud explaining and gesturing, we convinced Grandma to pray for my son Blake and his wife Norma because they had been married for a year and wanted a baby. Grandma finally understood, and the three of us stood in a circle and held hands. Grandma Elly’s voice turned serious as she prayed that I would have grandchildren and get to see them grow up. Her words caused me to weep. Is it okay to hope? Is it okay to dream of a narrative that isn’t really logically or scientifically probable? I have to go back to my favorite book Man’s Search for Meaning by Viktor Frankl. Here is his distilled truth: Even in the most intense suffering, we have a choice to make meaning. Meaning is derived from the hope of a future. No matter what the odds, all have the right to dream of a future in which we are fulfilled and carrying out our destiny. If Viktor Frankl can survive the loss of his wife and bear witness to unthinkable atrocities to write a book that would change the trajectory of psychiatry, then I can choose to imagine a future in which I have grandchildren and get to see them grow up. When we returned home, my husband and I started counseling. I remembered how much it had helped when I was initially diagnosed. My husband is sixty-one and retired. I’m fifty-seven and still have a few more years to enjoy my profession. We are at that stage when we need to set up a trust and discuss our long-term financial plans. Yet, whenever we try, one or both of us chokes up. It’s unbearable for us to plan any future beyond an impending scan. Our counselor teared up when we told her how we live in six-month increments. She was shocked at how we even functioned. At this, we cried—not tears of sadness as much as tears of validation. We hadn’t acknowledged the toll this burden had taken and how it colored every decision in our lives. As the weeks progressed, we shared how we didn’t feel comfortable sharing our deepest fears with each other. I didn’t want to burden my husband and he didn’t want to say anything that may make me give up. With this out in the open, we were able to formally give each other permission to share our dark feelings when they come. I tried it first. We were in San Francisco, our version of Disneyland, when I noticed a pain in my side. It reminded me of the dull ache I had prior to my PRRT. Normally, I would have kept this concealed because I wouldn’t want to put a damper on our vacation and, more importantly, I wouldn’t want to worry my husband. Nevertheless, I thought I’d give it a try. My husband was able to validate my worries without getting sucked in himself. It turns out that our low spots tend to happen at different times. So, one of us is usually strong enough to play the role of supporter. Instead of hitting the town that night, we hung out in our room and watched Dream House Renovation on Netflix. Slowly, the pain dissipated and we were able to enjoy the rest of our stay. A few weeks ago, the six-month scan timeline reared its ugly head. This time, many of the tumors had increased. “Four years is a very good run for PRRT,” my oncologist said. I thought to myself, “not nearly long enough.” My husband and I cried together on and off for days. I numbed my torturing thoughts with nostalgic movies like Saturday Night Fever and its pathetic sequel, Stayin’ Alive. My husband and daughter brought me bowls of soup followed by bigger bowls of cookie dough ice cream. I prayed, “God, how in the heck are you going to get me out of this one?” Then I remembered my LACNETS community and reached out to Lisa Yen (Director of Programs & Outreach). I realized that while I’m a patient mentor, as part of the NETCONNECT team, I’m still a patient myself. Sometimes I need mentoring. After networking with the worldwide NET community, Lisa had advice and encouragement and some promising options I didn’t know about. My other LACNETS friends reached out to me, as well, with encouragement and validation. In moments of fear and questioning, I know they will be there for me. Photo by Lisa Yen, Iceland So far, my grandma’s prayers still seem to hold their power. My son and daughter-in-law are having a baby—my granddaughter. I will get to hold her and tell her how much I love her when she arrives in March. There are no guarantees about how long I will get to be in her life, but while I’m on this earth, I’ll breathe all my wisdom and love into her. I rest in the knowledge that she will always be surrounded by a huge family that will adore her. If you Google the word “thrive,” an image of a green plant wrestling its way through a crack in the concrete comes up. Even when there are times I don’t feel like I’m thriving, I’m still going to make the decision to be a cancer thriver…no matter what . Written by Kelli Devan Edwards , NET Patient, NETCONNECT Mentor

In honor of National Family Caregiver Month, a caregiver shares what it means to be a caregiver to her husband who is living with NET. "Someone you love is ill and is in need It’s a journey of mostly necessity not choice It’s walking beside, behind and ahead and changing directions frequently It’s keeping a smile while hiding a tear Holding your fear in check Giving patience when frustration rises Being a receiver of their frustration Finding ways to direct my anger and theirs Taking on chores that were once theirs or shared Advocating for them even when they don’t think they need an advocate Making plans, changing plans, and changing plans Having difficult conversations about the future, including end-of-life Finding the balance between gentle reminders and nagging Looking for the bright side in all of this and rejoicing when you find the light even if only for a brief time Reminding yourself this is not the journey they chose to be on either Watching your loved one be so vulnerable Realizing there will be times when we are sharing a view from the mountain top, but somedays we will be in the valley and other days we might be coasting down the calm waters. Somedays our views will not be the same and that will be okay too I do not have to do this alone It’s knowing when the caregiving ends, I will have lost the one I love" Written by Beth Voyles A NET Caregiver & NETCONNECT Mentor

An Overview of PRRT Peptide Receptor Radionuclide Therapy Original post April 2, 2019; Updated 12/17/2022 By now, you’ve probably heard of PRRT. Maybe your doctor recommended it. Or maybe you’ve heard another patient mention it on a discussion board. You may have heard it’s a type of radiation. Or you may have read that it’s a promising new treatment available to NET patients. Right now, these four letters – P-R-R-T– are very powerful letters. They are packed with information and meaning. PRRT is perhaps one of the hottest topics in the NET community, sparking much interest and discussion. This article is intended to give a general overview by answering some frequently asked questions about PRRT. Note: NET patients in the United States may see these terms used interchangeably: PRRT, Lutetium 177 Dotatate, often abbreviated as Lu-177 and Lutathera®, the brand name for the FDA approved drug. What is Theranostics? Theranostics = thera peutics + diag nostics Theranostics is a combination of the words thera peutics and diag nostics . PRRT is a type of theranostics that uses the same targeting molecule for diagnostic imaging followed by treatment. With NET, the diagnostic phase in the U.S. is the Ga-68 DOTATATE scan (NETSPOT®) or Cu-64 DOTATATE scan (DETECTNET®), and the therapeutic phase is the Lu-177 (Lutathera®). Because they are paired in this way, Ga-68 or Cu-64 DOTATATE and Lu-177 are sometimes referred to as “theranostic twins.” Since you can’t have one without the other, a discussion about PRRT must also include the Ga-68 DOTATATE or Cu-64 DOTATATE scan. Note: Radioisotopes such as Ga-68 and Lu-177 are used not only for NET but also other types of cancer. In this article, we address their use for NET. What is the Gallium-68 or Copper-64 DOTATATE scan (SSTR-imaging or SSTR-PET)? The Gallium-68 (Ga68) DOTATATE scan and the Copper-64 (Cu64) DOTATATE scan (or simply known as DOTATATE scan) in a class of special PET scans that are paired with a radionuclide-labeled somatostatin analogue to detect somatostatin receptors on NET cells. With a DOTATATE scan, DOTATATE binds to the tumor cells and Gallium-68 (Ga-68) or Copper-64 (Cu-64) is taken into the cell. The scan “lights up” showing that somatostatin receptors are present. This is why you may also see it referred to as SSTR-imaging or SSTR-PET. The DOTATATE PET is done simultaneously with either a CT or MRI scan. The PET scan highlights the tumor and the CT or MRI scan shows a detailed view of the body. The two scans are fused together, resulting in clear, high-resolution images. The Ga-68 DOTATATE scan, also known as Netspot® was FDA approved in 2016 and the Cu-64 DOTATATE scan, also known as (DETECTNET®) was approved in 2020. DOTATATE scans are now considered the gold standard molecular imaging study, replacing the octreotide scan, to show the presence of somatostatin receptors . It does not measure tumor size. It is important to remember that the DOTATATE scan does not replace “conventional imaging” scans, MRI or CT. The DOTATATE scan is a functional imaging study that shows if tumors have somatostatin receptors. An MRI or CT scan is a structural imaging study that measures the size of tumors. One is not superior to the other; the scans show different types of information. DOTATATE scans are not used routinely to see whether tumors are progressing. CT or MRI are used for “surveillance,” to detect the presence of tumor(s) and measure their growth. Practically speaking, this means that you will have fewer scans than MRI and CT scans. Because the DOTATATE scan detects the presence of somatostatin receptors, it can reveal tumors that are not yet large enough to be seen on a CT or MRI scan. In other words, you might see tumors on your DOTATATE scan that you did not see on your CT or MRI scan. This does not necessarily mean that there has been a progression since your last CT or MRI scan. Remember, these are two different types of scans. You must compare one DOTATATE scan to another DOTATATE scan (or one MRI scan to another MRI scan) to determine disease progression. Tumor progression on DOTATATE scans would appear as more spots lighting up or more areas that have spots. Tumor progression on conventional imaging, MRI or CT, would appear as increased tumor size, which the radiologist measures using “RECIST” criteria . Both scans give you important information in different ways. Not all areas that “light up” (areas of uptake) on the DOTATATE scan are tumors. There are also “false positives” and areas of physiological uptake. Physiological uptake means it is normal for these areas to light up; these areas are not cancer cells. Areas of inflammation which are not cancerous may also show uptake which is not cancerous. It is important that these scans are read by nuclear medicine doctors who know how to read them properly. If there is any doubt, it is reasonable to request a copy of the scans on CD to be sent to an expert on your medical team for another opinion. If you have this scan done at a facility other than where your NET expert is, he/she will likely want to review the scans. The DOTATATE scan (or octreotide scan) must show uptake, indicating the presence of receptors on the tumors, in order for a patient to be a candidate for PRRT treatment. For more information on Ga-68 DOTATATE scans: Refer to the 2019 NANETS/SNMMI Procedure Standard for Somatostatin Receptor Based Peptide Receptor Radionuclide Therapy with 177Lu-Dotatate Here is the Appropriate Use Criteria by SNMMI Click here for the Guide to NETSPOT. Read NETRF’s article “A Better Way to Image NETs?” What is PRRT? PRRT (peptide receptor radionuclide therapy) is a type of treatment that uses targeted radiation to kill specific cancer cells. PRRT is a form of nuclear medicine. This means that it must be given by doctors who specialize in nuclear medicine. They are specially trained to use radioactive materials to diagnose and/or treat medical conditions. These nuclear medicine doctors are the ones who read and interpret DOTATATE scans, as well as other nuclear medicine scans such as PET-FDG scans, bone scans, and MIBG scans. They are typically the doctors who determine if you are a candidate for PRRT, and they oversee the actual treatment. PRRT is a method of delivering a radiolabeled somatostatin analog that targets specific receptors called somatostatin receptors (SSTR) . You may notice it referred to as SSTR-therapy in medical literature. Somatostatin receptors are expressed by many NET tumors. Somatostatin receptors are the same receptors that somatostatin analogues (SSA), lanreotide or octreotide, bind to. An analogue drug is one that has a structure similar to something else. With NETs, the analogue drug (lanreotide, octreotide, Ga-68, Cu-64, or Lu-177) mimics the naturally occurring hormone, somatostatin. Think of it like a copy of a key (i.e. SSA, Ga-68, Cu-64, and Lu-177) that fits in a lock (somatostatin receptor). These are also the same receptors that light up on the DOTATATE scan. The DOTATATE scan must show uptake, indicating the presence of receptors on the tumors, in order for the patient to be a candidate for PRRT treatment. Your pathology report from biopsy and/or surgery may also mention if your tumors have somatostatin receptors. They are often abbreviated “SSTR” on the report. You may see SSTR subtypes on your pathology report on your report listed such as SSTR-1, SSTR-2, SSTR-3, SSTR-4, and SSTR-5. If you have somatostatin receptors, PRRT can reach these receptors regardless of the tumor location or grade . Remember that with NET, the grade (based on Ki67) of the tumor is often more important than its stage. PRRT works by using a targeting molecule called a peptide (a group of amino acids) that binds to somatostatin receptors on the surface of the tumor cells. Using a chelator, the peptide is joined to a radionucleotide, specifically Lutetium-177, otherwise known as Lu-177. This combination of peptide plus radionucleotide is called a radiopeptide. Currently, PRRT using Lu-177 is the first FDA-approved PRRT in the United States. PRRT using other types of radionucleotides are being developed and may be available through clinical trials and in Europe. PRRT is likened to a “Trojan horse” packed with cancer-killing radiation that is snuck into enemy territory and causes destruction by killing the tumor cells from the inside. It is given intravenously into the bloodstream and travels to the cells that have somatostatin receptors. It binds to these cells and delivers the radiation into the tumor cells. What should I expect? Click the above image for the complete infographic by Carcinoid Cancer Foundation which describes how PRRT works, who might benefit from it, how it is administered, etc. PRRT is not a magic bullet. It is not intended to be curative . The goal of PRRT treatment is to increase survival, relieve symptoms, and improve quality of life. The NETTER-1 study measured progression-free survival (PFS) as its endpoint. This means the goal is to stop tumor growth. In other words, stable disease is good news! Remember that each individual is unique. Each person responds differently to PRRT. PRRT is one of many available treatments. It is typically not used as first-line therapy. The first line therapy is somatostatin analogues. Surgery should also be considered. PRRT may be used if tumors are considered inoperable and if there continues to be progression on somatostatin analogues. For more on who and when PRRT should be used, refer to the 2020 NANETS/SNMMI Consensus Statement on Patient Selection and Appropriate Use of 177Lu-DOTATATE Peptide Receptor Radionuclide Therapy . The FDA approval of PRRT with Lutathera® is not the end but the beginning. We hope to see many more advances in PRRT such as other types of PRRT and combination treatments. Read part two of this two-part blog post series, “PRRT (Part Two).” Resources: Check out the LACNETS PRRT videos Click here for more PRRT resources 2019 NANETS/SNMMI Procedure Standard for Somatostatin Receptor Based Peptide Receptor Radionuclide Therapy with 177Lu-Dotatate 2020 NANETS/SNMMI Consensus Statement on Patient Selection and Appropriate Use of 177Lu-DOTATATE Peptide Receptor Radionuclide Therapy First PRRT Approved by U.S. Food and Drug Administration , NETRF Summary of PRRT , NETRF Improving PRRT , NETRF Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

The Learn Advocate Connect Neuroendocrine Tumor Society (LACNETS) and Carcinoid Cancer Foundation (CCF) are excited to announce a partnership to provide a Support Line for those affected by neuroendocrine tumor (NET). The Support Line provides guidance, resources, and referrals to NET patients or their loved ones. The new partnership allows both organizations to leverage each other’s complementary programs and expertise to help NET patients and caregivers around the world. As one of the most recognized NET-related organizations in the US, CCF receives many inquiries for support from patients and caregivers every year. LACNETS, with its close ties to the patient and healthcare community, is poised to provide the best support possible. This partnership formalizes LACNETS’ Support Line, which will now provide support to those contacting CCF in addition to direct inquiries. The Support Line is a comprehensive addition to the current range of NET educational programs, advocacy tools, and support groups provided by LACNETS. To receive support, patients or caregivers can fill out a questionnaire available at https://www.LACNETS.org/supportline . The answers help LACNETS direct the patient or caregiver to the most relevant informational resources, introduce them to others with a similar diagnosis or treatment plan, or NET experts specializing in their area of inquiry. For more information, visit https://www.LACNETS.org/supportline .

First, let’s review some basic concepts… Theranostics is an approach that combines diagnosis and treatment by targeting the same receptors on tumor cells to detect them (diagnosis) or destroy them (therapy). Theranostics = Thera peutics + diag nostics With NET, the diagnostic phase of theranostics is typically performed with the Ga-68 dotatate scan (NETSPOT®) or Cu-64 dotatate scan (Detectnet™). This means that the dotatate scan is done and must show uptake, and indicate the presence of somatostatin receptors on the tumors, in order for a patient to be a candidate for PRRT treatment. [Note: Ga-68 DOTATOC is also FDA-approved for imaging.] The therapeutic phase is PRRT. PRRT = P eptide R eceptor R adionuclide T herapy PRRT is a targeted therapy where radiation is delivered to the tumor cells. Currently, the only FDA-approved PRRT therapy for NET in the United States is Lu-177 dotatate (Lutathera®). For more on the basics of PRRT, read the LACNETS blog post, These Four Letters: PRRT Part 1 . Note: Radioisotopes such as Ga-68 and Lu-177 are used not only for NET but also for other types of cancer. In this article, we address their use for NET. Beta vs. Alpha Beta and alpha particles are forms of radiation currently being used to treat NET in the form of PRRT. For more on radiation basics, read the United States Nuclear Regulatory Commission’s Radiation Basics . Lu-177 dotatate or (Lutathera®) is a type of beta PRRT. Although Lutathera® is currently the only FDA-approved PRRT, the other types of PRRT, notably alpha PRRT, are under investigation. There are two alpha isotopes available through clinical trials: Actinium 225 or Ac-225 – The study is called “ACTION-1,” a phase 3 study sponsored by RayzeBio. For more information on eligibility criteria, trial locations, study details, etc., view this trial on ClinicalTrials.gov (NCT05477576) . Lead 212 or Pb-212 – The drug name is “AlphaMedix,” available through a clinical trial sponsored by Radiomedix and Orano Med. For more information on eligibility criteria, trial locations, study details, etc., view this trial on ClinicalTrials.gov (NCT05153772) . *Lu177 DOTATATE is the only FDA-approved treatment. **In the USA, available only in the clinical trial as of April 2023 Currently, there are different types of PRRT trials: PRRT naïve: Someone who has not had PRRT before Someone who has had PRRT before PRRT combination therapy: There are studies comparing Lu177 in combination with another drug, often used as a radiosensitizer, to enhance the effects of the radiation. [See these PRRT combination clinical trials.] Sequencing treatments: comparing one treatment, such as PRRT, to another treatment to evaluate the order in which they should be given For more on PRRT: View the LACNETS PRRT videos See more PRRT resources THANKS TO OUR SPONSORS

Many NET patients are on a somatostatin analog (SSA), also known as “the shot” in the patient community. The purpose of the shot is to stop the growth of the tumor or to manage symptoms of functional tumors. (Click here for the LACNETS podcast episode on this topic.) Currently, t here are two major SSAs on the market, which may be referred to by their brand names (e.g. Sandostatin© LAR) or generic names (e.g. octreotide), similar to the pain reliever brand name (Tylenol©) that may also be referred to by its generic name (acetaminophen). The following table lists these drugs by generic and brand names, and notes the manufacturer of each: While SSAs are common, the terms may be confusing, and some feel anxious or stressed about them (see this blog post ). When discussing being treated with an SSA, your doctor may allow you to choose which shot you would prefer to receive. There are some important — and significant — differences between them. This table notes some key differences patients have identified that might influence your choice: Note: These medications must be administered by a trained medical professional. Sandostatin© LAR Somatuline© Depot Needle length Longer needle — goes deeper into muscle ​Shorter needle — only goes into fat layer Preparation Complex mixing process at time of use ​Requires refrigeration and thawing/warming to room temperature for 30 minutes prior to injection Cheek position before inserting needle (both are always at 90° to skin surface) Pinch the cheek Spread the cheek out flat Administration time (how much time it takes to squeeze the plunger to empty the barrel) No time given however, the plunging time can be quick to avoid the medicine hardening in the syringe/needle 20+ seconds Administration video Sandostatin© LAR Video Somatuline© Depot Video Administration Comparison Oncology live video Oncology live video Administration instructions/graphics Preparation Administration Preparation & administration, see pg. 10-11 Short-acting “rescue shots” available to relieve carcinoid syndrome symptoms? Yes No General product patient page ​Sandostatin© LAR Website Somatuline© Depot Website Somatuline© Depot Patient Brochure ​Patient financial assistance (Note: there are exclusions for Medicare and other government programs) Novartis Patient Assistance IPSENCARES Mobile administration while away from your clinic or at home Sandostatin© Mobile Administration program IPSENCARES brochure — Home Health program Prescribing information with required FDA information and warnings Sandostatin© LAR prescribing information Somatuline© Depot prescribing information People have a wide variety of experiences with the shot; some say that it's not painful at all, but for others, it may be painful. Brainstorming ways to reduce the anxiety, stress, and pain associated with receiving SSA injections has been a frequent topic in our weekly virtual support group. The following suggestions have been made by patients and caregivers. If you are just starting treatment, consider asking your doctor to start you at a low dose and increase the dose each month instead of starting your first injection with the full dose. You may request ice 30 minutes before your injection to numb the target area. Target areas for each product are shown below: Sandostatin Sites: Somatuline Depot Sites: ​ ​ Sources: https://www.sandostatin.com/en/neuroendocrine-tumors/administration/injecting/ ; https://www.drugs.com/pro/somatuline-depot.html Alternate between left and right for each dose. Tip: LACNETS founder, Giovanna Joyce Imbesi shared this trick: use ROLE ( R ight = O dd months, L eft = E ven months). If reversed, RELO and LORE works just as well. And yes, there are some months where this falls apart like long months that have 2 shots during the 28-day cycle. Whatever your system is, the key is to keep track of which side is injected each month. Receiving the injection while lying down will keep the gluteus muscle relaxed. To keep it from tensing while receiving the injection in a standing position, place all your weight on the leg NOT receiving the injection. The time removed from the refrigerator can be verified yourself. The pharmacy or nurse may write the “Out Time” on the box, meaning the time it is taken out of the refrigerator. Ask questions of any new person before allowing them to administer your shot. A poorly administered shot can be costly and could add to discomfort during or after the injection. Worse yet, it may mean not receiving the full benefit of the medicine until the next dose (usually 28 days). Here are some questions to ask your nurse before receiving the shot: Have you given this before? Have you been trained on the process to prepare and administer this medication? Do you squeeze or pinch the cheek? Plunger time — how long? Can you point me to the location you’ll be inserting the needle? Note: You can feel to make sure there are no lumps from past shots. Gently draw their attention to the prescribing information if any items are missed. If your nurse fails more than once you might ask to talk with the charge nurse to request someone else. Somatuline© Depot syringes have a needle retraction mechanism. When the plunger is bottomed-out, make sure the nurse keeps downward pressure on the plunger, remove the syringe needle from you, and then relieve pressure on the plunger. Failure to do so will retract the needle and your skin into the syringe body, giving a huge (and unnecessary) skin pinch. Once you’ve received the injection, here are some Do’s, Don’ts, and things to watch out for: Make sure the nurse does not massage or rub the injection area after the injection. Afterwards, walk around for ~ 20 minutes. Heating or ice will help reduce any residual pain. Tip: Remember, Do NOT rub/massage the area. You may feel tired after the injection or experience other symptoms such as headache or change in bowel habits for several hours or days, even after taking the shot for many months. Tip: You may want to take changes of clothes/digestive aids, anti-diarrheal medicine, pain reliever, etc. to address these side-effects after discussing what is safest with your doctor. Travel: If you plan to travel during the time of your injection, talk to the drug company about having a home health nurse administer it at your hotel/other location, or coordinate with another facility to receive your injection at the location you will be visiting. Tip: When looking for another facility, you might start with your healthcare network. For more helpful tips after receiving The Shot, be sure to review the previous blog here, under the section “WHAT CAN I DO TO MAKE “THE SHOT” LESS PHYSICALLY, EMOTIONALLY, OR FINANCIALLY STRESSFUL?” This blog is for educational purposes only and does not constitute medical advice. It does not provide a medical professional’s opinion or advice nor is it an endorsement for particular treatments. You are advised to seek appropriate licensed medical/professional help and discuss your individual care and treatment plan with your medical team. The content in this blogpost is the opinion of the author and the information is neither provided by nor endorsed by pharmaceutical companies, including Ipsen or Novartis. Note: External website URLs are current at the time of initial posting of this blog. Some links may be unavailable outside of the United States. THANKS TO OUR SPOSNORS

Receiving scan or test results can be one of the most anxiety-inducing experiences anyone touched by cancer can experience. You know these results will either fill you with joy due to treatment success or propel you forward to the next path in care which can be accompanied by feelings of grief, fear, anger, etc. In today’s day and age, a new complex layer is added to the experience of getting these results. Nowadays, most healthcare facilities make test and scan results available for the patient to read prior to seeing his/her doctor. This post addresses the pros and cons of this process to help you answer the question, “Should I look at my scan results before seeing my doctor?” Remember that everyone is different in how they choose to process this information. “Scanxiety'' is an all-too-real feeling associated with cancer-related scans. Undergoing the scan and waiting for results and the doctor’s recommendations can produce a high degree of anxiety, also known as “scanxiety.” This post focuses on scans, but the same can be said for other test results. I’m the one connected to my mother’s patient portal. This means, at any hour of the day following her scans, I might get an email notifying me that test results are available on my mother’s portal. The email usually looks something like DONOTREPLY@.org . Seeing this is enough to get my heart pumping and my sweat glands working and knowing it can come at any minute keeps me on edge for a prolonged period of time. Then comes the decision: Do we look at the results, or do we wait? Let’s break down the pros and cons. CONS: 1) Misinterpreting the information presented. At the end of the day, no matter how knowledgeable we think we are about cancer, there’s always the possibility of misinterpreting what we’re reading. While I like to refer to the “impressions” section of scan reports to sum up what is happening, sometimes it’s not clear-cut. We must remember that most of us are not medical professionals, so we might not be fully understanding the scenario, which brings me to my next point… 2) Blowing things out of proportion. It’s easy to blow scan results out of proportion without a medical professional walking you through them. For example, when I first read my mother’s scans that said “innumerable” lesions in the liver, my mind couldn’t even comprehend what was going on. For a week, I sat in worry, only to learn that less than 25% of her liver was compromised, and not a single doctor was worried. At other times, we might read that there has been growth, but without context of what is enough growth (1mm? 5mm? 1cm?) to warrant a change in treatment. Sometimes test results are just too complex for us to understand. 3) Adding stress and anxiety. While keeping the two previous points in mind, reading news that might not be what we wanted can send us into a spiral. I’ve been there. After reading of progression, my body goes into panic mode - loss of appetite, headaches, and numerous Google searches. It’s important to read scans with the awareness that your mind can take you to some scary places. 4) Not having immediate access to the support you might need. The last point I’d like to touch on is the lack of access to a medical professional the second after you read a scan. On one of my mother’s first scans, I learned that her splenic vein was blocked completely by the tumor on her pancreas. I wanted to call a doctor immediately and schedule her for surgery at that very moment. But, given that it was a holiday weekend, I knew I’d be waiting at least four days. The best and most immediate feedback is always available at appointments. PROS: 1) Allowing yourself the possibility of alleviating stress, pending positive results. I always like to err on the side of good news. Often, when scan results come in, I think, “I should look now so we can celebrate stability and alleviate this stress!” While we’ve been blessed with many stable scan results, you just never know what’s waiting for you in the impressions. But, there have been many times when I’ve been grateful to read of stable scans, before going into a holiday weekend, a vacation, etc. It’s certainly risky, but it’s been worth the pay-off when we’ve been blessed with stability. 2) Giving yourself time to process the information. When my mother was first diagnosed, it felt as if textbooks of information were being thrown at us, and often we’d leave an appointment forgetting what was said and wishing we had asked many more questions. But this is often the reality of cancer appointments. We’ve learned how to combat this along the way but tackling this issue will be different for everyone. If scans show changes, looking at them before the appointment allows you time to process the information at home, experience your feelings and be ready to focus at the appointment. However, it’s important to find a support system, whether it be with another patient/caregiver, a family member, a therapist, or whatever works for you, because processing such information can take a toll and is not for everyone when a doctor isn’t present to explain things. 3) Allowing you to formulate questions for your appointment. Once we’ve had time to process the information, we then get to work on formulating a list of questions to bring to our appointment. Typically, we get the results 5-7 days before actually seeing the doctor. I use that time to read articles, post on Facebook groups, and talk to other people - and then I jot down every question that comes to mind. This makes me feel like I have some control over the situation and to know that I’ll have asked everything on my mind to make me comfortable with whatever step is next. 4) Ending the anticipation. Sometimes there might be merit to just ripping the Band-Aid off and finding out what’s going on. The wait and anticipation can be just as bad as the reality of reading whatever is waiting in the scan impressions. This varies from person to person, as everyone copes differently with this process. I’ve learned that I’m the type of caregiver that must read the results as soon as they come in. There have been multiple occasions when I’ve created excess worry due to looking at the reports and there have been times when I’ve relaxed and celebrated after reading the reports. Each time is different, and each time I experience new emotions. I’ve yet to find the perfect balance, but I’ve learned some things along the way: 1) Learn your healthcare facility’s schedule for releasing scan results. This can mentally prepare you for when to expect results so you aren’t needlessly worrying every time you refresh your email’s inbox. 2) Schedule your scans closer to your appointment. Some facilities require at least a week between scans and the appointments, but others will see you the same day. This is a question to ask your care team. 3) Know your comfort levels. It might take time to do this but find out what works and what doesn’t work for you. 4) Set limitations. Maybe this means only allowing yourself to look at the results the day before or the morning of the appointment; that way, you have enough time to process the information and formulate questions, but not extra time for worrying. 5) Consider your daily quality of life. Don’t let scanxiety consume your days. (However, I type this knowing that, even after three years, I haven’t mastered this yet.) So… to check or not to check scan results? Ultimately, there is no right or wrong answer. Some people prefer to see the scan results prior to the appointment, and others would rather wait. But, if you’re like me, you live in an area of back-and-forth as to what is the “right” answer. After nearly three years of this, with some scans that have been amazing and others that have not been as favorable, my mother and I have made it through each one. But remember there’s plenty of support out there to help you through whatever you’re going through. You are not alone. This blog is for educational purposes only and does not constitute medical advice. It does not provide a medical professional’s opinion or advice nor is it an endorsement for particular treatments. You are advised to seek appropriate licensed medical/professional help and discuss your individual care and treatment plan with your medical team. The content in this blogpost is the opinion of the author and the information is neither provided by nor endorsed by pharmaceutical companies. THANKS TO OUR SPONSORS

In "Against the Tide: The Mary Donlevy Story," Mary shares her NET journey as part of the 'Stories of Hope' video series, a joint effort by LACNETS and the Carcinoid Cancer Foundation . ABOUT MARY Mary is a NET Patient, a NETCONNECT Mentor & LACNETS Board Member. Mary was diagnosed in 2005 with a pancreatic NET. She had the whipple procedure after her original diagnosis. She is a mother to four children, two of whom are identical twins born after her diagnosis with NET. ABOUT NETCONNECT NETCONNECT is a program connecting NET patients and caregivers with NET mentors for support. To connect with mentors like Mary or to become a mentor, please email us at info@LACNETS.org. MORE VIDEOS Watch Mary share her experience in a clinical trial. ​ Watch Mary also share about "scan-xiety," the common anxiety patients sometimes have when undergoing scans here. ​ Watch Mary share her story of living with pancreatic neuroendocrine tumor. Learn Advocate Connect Neuroendocrine Tumor Society (LACNETS) provides a community of support and education for neuroendocrine tumor (or neuroendocrine cancer or NET) patients and caregivers. For more information or to learn about upcoming events, visit LACNETS.org.