Thrive Survivorship Digital Magazine, Fall 2024

Fall is upon us! As we start to think about leaves falling and pumpkin spice, we hope you enjoy the latest edition of our quarterly Survivorship digital magazine, Thrive . If you haven’t already, we hope you’ll click here to sign-up for future editions. This edition has a special focus on breast and lung cancer awareness. If you have any questions on our content, or ideas for articles in upcoming editions, please contact Amy Litterini at amy.litterini@mainehealth.org.

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Survivors Giving Back

Meet Shawna

Advocating for Change, Shawna Ackley is a Force

By Amy Litterini

When you meet Shawna Ackley for the first time, it becomes immediately obvious that you're in the presence of a positive force. Shawna is a 41-year-old breast cancer survivor, wife of Jason, and mother of son Stellan, age 6. At the time of her diagnosis three years ago, she was chasing a busy toddler with no known risk factors for breast cancer. Shawna’s stage 1 invasive ductal carcinoma of the right breast was treated with bilateral (both sides) mastectomy and reconstruction, followed by endocrine therapy to limit the chances of her cancer returning.

I first had the pleasure of making Shawna's acquaintance early on through the Drive Fore a Cure fundraising event hosted by her friend Debbie Cupo (read Deb’s survivor story here). Shawna was the guest speaker, and she shared her survivorship story alongside her surgeon, Dr. Liz Desjardins. We’ve made regular and frequent connections ever since. We would stay in touch to connect about the many projects Shawna was involved in, all ultimately in support of her fellow cancer survivors or people she would never meet who needed breast cancer screening. The first time she reached out, it was about how she could distribute weighted blankets to breast cancer survivors across the state. Next, it was to let our clinics know about a holiday event where presents were distributed for breast cancer survivors and their family members in the greater Portland area. The third time was to talk about LD 1836, legislation that was passed in the state of Maine about coverage for diagnostic imaging for breast cancer detection.

As the three-year anniversary of her diagnosis approaches on October 20, 2024, she was able to take some time to reflect on everything that’s happened to her since. This July, Shawna participated in her 10th Tri for a Cure, a passion for her long before her diagnosis. Since being diagnosed, Shawna has modeled in the New England Breast Cancer Alliance’s (NEBCA) “Runway for Hope” and then served as a board member. At NEBCA, she joined in the distribution of $300,000 in donated goods from the United Breast Cancer Foundation. She helped to raise and/or save our cancer community over $100,000 by fundraising or sharing grants. She became a Susan G Komen Center for Public Policy Advocacy Ambassador, and attended the Komen Advocacy Summit in Washington, DC. There, she met with our members of Congress to advocate for the Access to Breast Cancer Diagnosis Act, Safe Step Act, and SCREENS for Cancer Act. Shawna shared: “I’ve made so many beautiful friends that I would never have met without cancer.

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Shawna Ackley, left, and her surgeon Dr. Liz Desjardins, right

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Moving forward, I will continue to advocate for change on the high cost of diagnostic imaging for those going through this behind me. I will continue to share resources with my fellow survivors, no one fights alone." In October, she’ll return to DC to continue advocating for change.

Shawna’s positive energy and genuine willingness to step up and get involved is truly inspiring. I have no doubt there will be multiple other connections we'll make over the years as she continues to push to improve cancer survivorship and the lives of Maine breast cancer survivors. Keep an eye out for Shawna in the next few years as chances are good you'll see her in some role for the greater good in the world of cancer survivorship!

From left: Deb Cupo, Jason Ackley and Shawna at Drive Fore a Cure

From left at Tri for a Cure 2024: Shawna, son Stellan, and husband Jason Ackley Shawna on Capitol Hill in her advocacy role

Survivor to Survivor

Meet Arlene

Arlene McLean’s experience with cancer comes full circle

By John D. Begin

When Arlene McLean began working in MaineGeneral Medical Center’s Radiation Oncology Department in May 2000, she couldn’t have envisioned two things – that she’d still be helping patients 24 years later and that she’d become one of them.

Now the practice administrator at the Harold Alfond Center for Cancer Care in Augusta, McLean is a breast cancer survivor. She also will be a marshal for MaineGeneral’s annual Day of Hope on Saturday, Oct. 5 at the Augusta Civic Center, where she’ll share her cancer story.

Always a supporter of cancer patients during her career, the Winslow resident now has a much deeper understanding of the many challenges they face.

From her diagnosis in June 2023 through her treatment, McLean documented her experience through Facebook posts that were personal, inspirational and educational. Her goal was to help others better understand the cancer treatment journey.

“I always felt I was placed here to help family members, friends or people I’ve met get through their cancer diagnosis and treatment,” she said. “I used to be a very nervous person but that changed when I started working in oncology. You meet people at possibly the lowest point in their lives and they’re scared.

I always tell my patient schedulers, ‘Do whatever you can to make a patient’s journey easier.’ That’s so important.”

“Looking back, I think the change in me occurred so I’d be comfortable when it was my turn to be a patient,” she added.

McLean’s family, like so many, has a history of cancer – her mother and three of her aunts had breast cancer, and her uncle died of pancreatic cancer. Despite this prevalence, her own diagnosis was a shock.

After discovering a lump, she had a screening mammogram. More imaging and a biopsy followed, and then additional biopsies at the Dana-Farber Cancer Institute in Boston that confirmed she had triplenegative breast cancer. McLean had lumpectomy surgery at the Alfond Center for Health in Augusta and then 16 chemotherapy and 25 radiation treatments at the cancer center next door.

While the treatment regimen was physically and emotionally challenging, she found hope and strength from many sources. Foremost among them were her husband David, her adult children and eight grandchildren ranging in age from 3 to 13.

“I have the best family. Everyone took a rotation to be with me at each chemotherapy treatment, and the kids arranged for us to have family photos done before I lost my hair, which was wonderful,” she said.

“My grandchildren have been awesome. They wanted to feel my head after I lost my hair – and they’re still touching it because I now have hair.”

McLean’s network of friends also filled her with hope – and then there are the cancer center clinicians, nurses and staff who supported her in many ways.

“Many of the staff were new and weren’t even aware I worked at the center,” she said. “They were absolutely wonderful and didn’t treat me differently than any other patient. That’s what I wanted.”

Previous: Arlene McLean, proudly wearing her Thriver sash as a breast cancer survivor

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A much deeper sense of thankfulness From interactions with patients at the center since it opened in 2007, McLean understands the importance of having high-caliber cancer care in Central Maine. Her experience as a patient has only strengthened this belief.

“We’re so fortunate to have such a high-quality cancer center in Augusta. It’s a beautiful place to work and a beautiful place to come for treatment,” she said.

McLean also has seen how the center has been taxed in responding to a greatly increased patient population and need for services. She knows the importance of the current $36 million project to expand and renovate the center to meet this demand.

“As an administrator, I’m most excited to see our treatment space grow and to know that any patient who needs care will have timely access to treatment close to their home and families,” she said. “This expansion is more than bricks and mortar. It is hope – for the future, for a cure, for more memories and time well spent. It will change the lives and futures of many.”

And as a survivor, McLean is eternally thankful for the expert, compassionate care she received. “I always felt thankful before my diagnosis, but it’s a whole new level of thankfulness now.”

To learn more about the Day of Hope, visit https://give.mainegeneral.org/hope. To learn about the center expansion, visit https://give.mainegenera.org/expand.

John D. Begin is a communications specialist in MaineGeneral Health’s Marketing and Communications Department.

Left: Arlene McLean, breast cancer survivor and practice administrator at the Harold Alfond Center for Cancer Care, shown outside the center which is undergoing a $36 million expansion and renovation.

Maine’s Pink and Pearl Awareness Proclamation Declares Pink and Pearl Awareness Weeks last week in October and first week in November Augusta, ME— The Maine Center for Disease Control and Prevention (Maine CDC) is partnering with health systems in Maine to encourage eligible adults to be screened for breast and lung cancer. Governor Mills and Secretary of State Bellows signed a Proclamation (see next) naming the last week in October and the first week in November, Pink and Pearl Awareness Weeks (pink being the color for breast cancer and pearl being the color for lung cancer). Several imaging centers in Maine plan to offer extended hours for breast and lung cancer screening during October and November. Some will be open for weekend appointments including many on National Lung Cancer Screening Day (Nov. 9, 2024).

The most current cancer data show female breast cancer with the highest incidence rate in the state with significantly higher rates than the U.S. (2021, 145.9 per 100,000, 133.8 per 100,000, respectively). Lung cancer is the second highest rate of cancer in Maine and is also significantly higher than the U.S. rate (2021, 62.7 per 100,000, 49.1 per 100,000, respectively). Female breast cancer was the 5th highest cause of cancer related death in 2021. Lung cancer has been the leading cause of cancer death in the state for the past two decades and in 2021 remained significantly higher than the U.S. rate (38.1 per 100,000 and 31.7 per 100,000, respectively, 2024 Maine Cancer Snapshot). “Both breast and lung are two cancers that, when screened for on a regular basis, can be found early when the disease is easier to treat,” said Dr. Va, Director of Maine CDC. She encourages all adults to have a conversation with their provider about when to begin screening and how often to be screened. If you’re not sure where to begin the conversation with your provider, check out these questions from the American Cancer Society: https://www.cancer.org/cancer/screening/questions-to-ask-your-doctor-about-cancer-screening.html For information on recommended cancer screenings visit: www.screenmaine.or g. For financial assistance with breast cancer screening, contact the Maine CDC Breast and Cervical Health Program https://www.maine. gov/dhhs/mecdc/po pulationhealth/bcp/contact. htm Read the full proclamation HERE.

First Annual Purple for a Purpose Scarborough, ME

Thank you to everyone who attended the first annual Purple for a Purpose, a day of wellness, education and community for gynecological cancer survivors and their loved ones on September 28th on our Scarborough campus. The event, hosted by the GYN oncology team, included a walk, educational tables, lunch and learn presentations, yoga, and a gift raffle. Your support and presence made the event truly special, and we look forward to growing this meaningful tradition together!

Lee Goldberg is Realizing his Mission Second Annual Pints for Prostates a Hit Scarborough, ME

Prostate Cancer Maine held the second annual Pints for Prostates fundraising event at the Dunstan Tap & Table on September 30th. The nonprofit organization’s founders, the Goldbergs and the Ryans, greeted the 125 attendees with delicious food and the option of themed drinks like “P.S.A. Sangria” and “The Biopsy”. Live music

by Aaron Beaulieu created a festive atmosphere, and a silent auction of donated items provided a competitive option for all while raising $5,000.

The future goals for the funds raised include furthering the nonprofit’s mission, and bringing P.S.A. testing to rural areas where people may have limited access to health care services.

Click here to learn more. To read Lee’s story from our earlier edition, “Lee’s Mission,” click here.

Top left: Dr. Stephen Ryan (L) and Lee Goldberg, top right: Chris Costa (L) and Lee; above: Aaron Myler; left: Lee and wife Karen; far left: the WSCH 6 news team.

20226332 #36461005.3 IRB Approved at the Protocol Level Mar 21, 2024

DETECTING CANCER EARLY HELP WITH RESEARCH INTO EARLY OVARIAN CANCER DETECTION

Reducing the likelihood that ovarian cancer is a cause of your symptoms is a major relief.

The OVERT Study is collecting blood samples from up to 5,000 women aged 22 years and older with vague symptoms who will take part in the OVERT study. Participation in this study will contribute to scientific research that could transform early detection of disease for women.

Symptoms of ovarian cancer are vague and are often ignored; research shows women have symptoms early in the course of disease. It is important to take women’s symptoms seriously and reduce the likelihood that they are due to ovarian cancer, which in the early stages is a highly treatable disease.

SYMPTOMS INCLUDE:

1

Unintentional weight loss

2

Vaginal bleed (post-menopause)

3

Feeling full after eating a few bites

4 5

www.overt-trial.com Protocol ID: AOA-PRT-0001 Protocol Title: Collection Banking of Blood Samples for the Study of Female Gynecological Diseases

Persistent bloating or abdominal distention

Been told you have a lump (mass) on the tissue near your uterus

Your physician will conduct a physical examination, review your clinical history and symptoms, collect a blood sample, and perform a transvaginal ultrasound (TVU). Depending on your physician’s findings you will either be referred to a specialist or more likely require follow up visits at 6 and 12 months after your initial visit. The 6 month follow up visit will be a telephone consultation and the 12 month follow up visit will be a telephone consultation or a possible in person visit that will include a transvaginal ultrasound. The information collected will enable physicians to assess the accuracy of the blood test. If the study is successful, the study could transform early disease detection for women.

Contact your local physician for more information and to see if you qualify.

AOA Dx, Inc is sponsoring the study. For further information visit www.overt-trial.com

Take the 2024 Survivorship Survey

Have you been diagnosed with cancer or cared for someone with cancer? If so, you may be eligible to take the 2024 State of Cancer Survivorship Survey.

The National Coalition for Cancer Survivorship (NCCS) conducts an annual State of Survivorship Survey, in partnership with Edge Research, to delve into the cancer patient and survivor journey. This study captures a range of perspectives to better understand how NCCS can support its mission to advocate for quality cancer care for all. New this year, we’ve added a companion survey for caregivers. Click HERE to access the surveys.

November is Lung Cancer Awareness Month

Minimally Invasive Lung Surgery Improving Outcomes

By Angela Amano, ACNP

Ion Robotic bronchoscopy is a new and exciting tool in the diagnosis and treatment of lung nodules. The primary goal is to diagnose pulmonary (lung) nodules with minimally invasive techniques. Using 3D mapping and a shape sensing catheter, the surgeon guides an ultra-thin robotic bronchoscope to distant parts of the lungs without making any incisions or punctures in the chest wall. Our Thoracic and Pulmonology teams are well trained in this innovative technique and join only a handful of other hospitals in Maine which offer this procedure.

The da Vinci XI surgical robot Dr. Syed Quadri recently used the Ion Robotic Bronchoscope along with the da Vinci XI surgical robot together to accurately localize and surgically remove a malignant peripheral lung nodule. This “first in Maine” combined procedure was done with minimally invasive techniques and the patient went home in less than 24 hours after the procedure.

Lung Cancer Screening Lung cancer screening has revolutionized the diagnosis and staging of lung cancer. The National Lung Screening Trial decreased mortality from lung cancer by 20% in high-risk patients who underwent annual low dose CT scans. These scans can show small lung nodules before they cause symptoms. Only some of the solitary pulmonary nodules that are seen on LDCT screening exams represent lung cancer. While PET scans help to determine which nodules are more likely to be cancer, only tissue biopsy can definitively diagnose lung cancer. ION robotic bronchoscopy is very helpful for diagnosing many of these small nodules. Patients who are suitable for surgery can then have lung resection to better control and possibly cure their lung cancer.

Syed M Quadri, MD

The Lung Cancer Care Team at MaineHealth, Maine Medical Center US News & World Report has designated Maine Medical Center as “High Performing in Lung Cancer Surgery” in 2024. We have three board-certified minimally invasive surgeons who specialize in robotic and thoracoscopic surgery for lung cancer. Along with the surgical specialists, our team includes medical and radiation oncologists, advanced practice providers, nurses, nurse navigators, and medical assistants to help guide patients through their treatment journey.

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Other providers of the Thoracic Oncology Team, from left: Angela Amano, ACNP, Jenn Burg, MD, Snow Tardif, RN, Gary Hochheiser, MD

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The ION system that allows the surgeon to control the surgical robot is top right (A). The surgical instrument used to move and remove tissue is shown at center right (B). The surgeon’s view of the tumor using the ultrasound bronchoscope is shown at bottom right (C).

At top left (D), the surgeon’s view inside the chest cavity. The spinal column is on the left and the lung is on the right side (surrounded by gauze rolls). At bottom left (E), the same view as D, with a fluorescent dye to mark the tumor (illuminates as bright green) and isolate the area to remove.

For more information on our lung screening program, please speaker to your provider and click here. To learn more about our thoracic oncology program, click here.

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D

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E

How the Art of Ink Can Help Heal

Erin Hartigan, near her home in Pownal, ME

By Amy Litterini Erin Hartigan comes from a large family from Lowell, MA. She loves to host as many as she can around her dining room table at the holidays and always puts family first. After getting her athletic training and physical therapy degrees at U Mass, and her PhD at the University of Delaware, she came to Maine to teach physical therapy at the University of New England. She married her husband Scott in 2011, and the two of them welcomed their daughter Sophia into the family in 2014.

Erin’s large family has provided lots of love and support over the years, but their medical history also came with increased risk of developing cancer. On her father’s side of the family, seven of nine

siblings were diagnosed with cancer, and they lost both her aunts Paula (at 34) and Lisa (at 60) to breast cancer. Another aunt continues to fight the disease. In addition to the breast cancer history, her family also has a history of gastrointestinal and prostate cancers. Even with her genetic testing being negative for a BRCA gene mutation known to cause breast and ovarian cancer, Erin has had to deal with multiple call backs to address suspicious views on her mammograms or concerns on breast MRI’s, with ultrasounds to follow. She had multiple biopsies that were painful, stressful, costly and time consuming. After going back and forth with her insurance company for years as a previvor (a survivor of a predisposition to cancer), Erin finally got authorization to schedule a double mastectomy with breast reconstruction. Her surgery was performed by Dr. Pat Greatorex in January, 2024, with immediate breast reconstruction with implant expanders by plastic surgeon Dr. Sirish Maddali. Her recovery was uncomplicated, and her baseline level of fitness helped her get back to work and home life quickly.

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Shortly after Erin was able to remove her surgical dressings, her daughter Sophia (now 10) was ready to see her chest. As soon as Sophia saw her, she had a shocked reaction and left the room. Sophia later said she was prepared to see the incisions, but not prepared for what they now refer to as “Barbie boobs,” breasts without nipples. Erin was hopeful that tattooing would help.

The concept of self-image, or body image, is a common concern among cancer survivors and refers to the personal relationship we have with our body. Body image is not just about how one thinks they look, but also how we feel about all aspects of our body (e.g., appearance and function). Following cancer treatment, concerns about one’s self-image can be temporary or long-lasting, and most require a period of adjustment to gain acceptance. Even though these concerns are considered normal and expected in oncology, they may require the support from a specialist to help process, address and cope.

The art of medical tattooing can help with skin discoloration or camouflage scarring from multiple conditions such as trauma, surgery, cleft palate correction, or a chemotherapy port. In oncology, this advanced form of cosmetic tattooing can also be used to address hair loss on the eyebrows, eyelash line, face and/or scalp following alopecia from chemotherapy. Following mastectomy, tattooing can be used to recreate the nipple areolar complex of the breast. Some previvors and survivors prefer elaborate, decorative tattoos to cover areas where a surgery occurred. Tattoo safety for both the general public and cancer survivors has been in the news lately, and the experts have concluded there is no direct link between tattoo ink and cancer. For those who think a cosmetic tattoo would be beneficial for them and their self-image, please discuss with your provider.

A True Calling

At the start of 2020, Corina Klein was a wife and mother of two grown children. Born in Canada, she’s had a successful career in banking and been in New England and since 2011. In January, 2020, her mammogram was negative. She found a lump at the end of March, but with the challenges at the start of the pandemic, an ultrasound and a biopsy confirmed her diagnosis on April 16th. Corina had triple + invasive ductal carcinoma of the breast (i.e., positive for estrogen, progesterone, and HER2) and extensive chemotherapy followed. The first six cycles started in May, and it was 14 cycles the second round. She decided to undergo bilateral nipple-sparing mastectomy in September. Unfortunately due to necrosis (tissue death), she had to have her nipples removed just three weeks post-surgery.

In February of 2021, she began breast reconstruction which included 3-D nipple tattoos. She was surprised to Corina Klein, learn the tattoos were considered cosmetic, and not Founder/President of Ink 4 Pink medically necessary. Corina’s experience inspired her to think of others who may struggle with the out-of-pocket expenses of medical tattoos not covered by insurance. She got to work launching the nonprofit organization Ink 4 Pink, with the mission of confidence.

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Corina and her all-volunteer board hold fundraisers to provide assistance for previvors, and men and women with breast cancer in Vermont, Maine, New Hampshire, Connecticut, Massachusetts and Rhode Island, with the medical tattoos they need to help them feel complete again. Her story has also been featured on the Susan G. Komen website to help inspire others.

Art for Healing

Through a friend, Erin got connected with CosMed.ink. Corina from Ink 4 Pink then supported Erin to meet with a local medical tattoo artist in South Portland, Beatrice “Bea” Pillet O’Connell. Bea started CosMed.ink two years ago with the goal of helping her clients heal and feel whole again. Growing up in France as the daughter of a veterinarian, as a young girl Bea helped her father tattoo dog registration numbers on the soft bellies of puppies. After a successful career in journalism and communications in print, TV and radio, she then went on to become an aesthetician to pursue Bea Pillet in her office in South Portland her passion for film make-up, cosmetic enhancement, and medical tattooing. Bea was inspired by renowned tattoo artist Vinnie Myers (featured on TODAY), who pioneered the 3-D nipple-areola technique. She went on to study restoration tattooing at the Perelman Center for Advanced Medicine at Penn in Philadelphia, and is board certified by the American Academy of Micropigmentation. Bea worked with Erin to create her 3-D tattoos to finish her reconstruction process.

The path for previvors and survivors is an individual one. Each person will have their unique experience and personal challenges to face, and choices to make on how to tackle them. Knowing you’re not alone is key; and, knowing what resources are available to you is important. The organization FORCE (Facing Hereditary Cancer Empowered) has resources available online.

If you’re experiencing body image concerns and would like support, please reach out to your provider’s office. Asking for a referral to a counselor, and/or a recommendation to a cosmetic specialist, can be the first step. The national Look Good Feel Better program is a resource with virtual options for tips on The Hartigan Family hiking in Baxter State Park in dealing with appearance-related side effects Millinocket, ME. From left, Scott, Sophia, and Erin from cancer treatment for men and women.

Join us on November 21st!

Where: Maine Medical Center, Courtyard Hall When: 9am-3pm, November 21, 2024 What: Free nicotine replacement, prizes and treats At left: Holly L. Stewart, PMH-NP, C-TTP MaineHealth, Tobacco Treatment Program; right: Snow Tardif, BSN, R.N. MaineHealth Program Manager, Lung Cancer Screening Program

Opportunities to Go Smoke & Vape Free!

Innovative Navigation Maine Medical Center in Biddeford and Portland now have a new role for Oncology Nurse Navigators (ONN) to provide inpatient to outpatient support to patients with a new or suspected cancer diagnosis. In this role, the navigator will assess and address barriers to care, review and facilitate next steps in a patient’s care and provide education, ensuring that patients are well informed about their disease process and are receiving timely treatment.

Navigators assess and address barriers to care; anticipate needs upon discharge and make referral as needed: • Primary Care Provider • Financial barriers • Insurance barriers

• Transportation barriers

• Nutritional needs

• Psychosocial needs

• Medication barriers

• Language barriers

Navigators facilitate care: • Medical appointments/ physician referrals • Expedite outpatient diagnostic work up • Coordinate follow up with outpatient oncology • Monitor pathology results • Coordinate testing (e.g. imaging, labs etc.)

• Act as point of contact for patient and family Members of the navigation, social work and survivorship teams from • Resource for symptoms management across the network recently met in Scarborough for an educational • Place referrals for care and programs retreat and annual in person networking (e.g. outpatient nutrition, social work, financial support) Navigators provide patient-family education • Meet with patient while inpatient for introduction and review of navigator role.

• Provide education related to new or suspected diagnosis.

• Review next steps in plan of care i.e., imaging, pathology, labs, other testing, appts.

• Cancer screening and prevention

To learn more about cancer patient navigators across our system, visit our website here.

Goals of Navigation Service: • Provide patient advocacy • Ensure patients receive timely follow up diagnostics and treatment.

• Ensure patients are well informed about their disease process.

• Improve patient and family satisfaction.

• Provide support to providers • Decrease length of stay and re-admissions.

• Decrease unnecessary duplicate testing after discharge.

• Foster patient empowerment and provide patients with information and resources that increase their ability to make appropriate health care choices and receive medical care with an enhanced sense of confidence.

Meet Susan

Susan Raposa is a registered nurse with a unique blend of expertise in health care and community education. Susan became a registered nurse in 2009 and has spent most of her nursing career specializing in the field of oncology. Prior to joining the Cancer Care team at MaineHealth in outpatient oncology navigation, she was an Oncology Nurse Navigator at Portsmouth Regional Hospital. Previously, she worked at York Hospital Cancer Care providing clinical care in all aspects of IV therapy, including blood transfusions, biotherapy, immunotherapy, and chemotherapy administration. Throughout her nursing career she has primarily worked with patients coping with a cancer diagnosis-guiding them through the cancer care continuum.

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“I am truly excited to be part of the oncology nurse navigation team at Maine Health,” states Susan. “In addition to the privilege of providing compassionate care and support to a patient and their family, a nurse has the unique opportunity to use their passion and purpose to touch another life in a meaningful way. I am inspired daily by the resilience and expression of hope displayed by patients who are coping with a new or suspected cancer diagnosis.”

“Personally, I am blessed beyond measure with a supportive husband (Dan), five children (Jen, Jaimee, Jim, Jesse, and Jenna Rose) and nine grandchildren. I enjoy spending time with my family, reading, gardening; and traveling to far-away places.”

Susan graduated with a Bachelor of Science degree in Nursing from the University of New Hampshire. She is a current member of the Oncology Nursing Society (ONS), the Northern New England Clinical Oncology Society (NNECOS), the Society for Immunotherapy of Cancer (SITC), and the Academy of Oncology Nurse & Patient Navigators (AONN).

Jayme Nicholas, RN, BSN Medical Oncology Nurse Navigator

Susan M. Raposa, RN BSN Oncology Nurse Navigator

Meet Jayme I graduated from the University of New England in 2010 with a degree in medical biology, and again in 2014 with a bachelor's degree in nursing. I have been working as a nurse for ten years and have worked at multiple MaineHealth locations, including Pen Bay Medical Center, SMHC in Biddeford, and Maine Medical Center. I have worked on the inpatient medical-surgical, cardiology, and surgical oncology units, and most recently, in the Medical Oncology clinic in South Portland supporting the hematology team.

My position as Medical Oncology Nurse Navigator is newly created and began in January, 2024. My primary focus is assisting patients at MMC with a new or suspected oncology diagnosis transition from the Emergency Department, Urgent Care, or inpatient units to outpatient oncology care. My role includes ensuring timely outpatient oncology follow up, assessing for barriers to care, providing support for patients and their families, and educating patients and their families about what to expect and next steps with their outpatient care.

I live in southern Maine with my husband and our two dogs, Dexter and Izzy. I enjoy hiking, paddleboarding, reading, and spending time outside.

Clinical Trials at MaineHealth

By Patricia Hager, MFA, and Cynthia Marcotte The Fall 2023 and Winter 2024 issues of Thrive included articles about clinical trials at the Maine Health Cancer Care Network (MHCCN). The Fall 2023 article was an overview of clinical trials; the Winter 2024 article looked at specific types of trials offered by MHCCN. This third installment in the series looks more specifically at what is involved in participating in a clinical trial and some questions to ask if you are considering participating in one.

As a potential clinical trial participant, you will meet with a nurse from the clinical trial research team and be given a consent form with information about your specific clinical trial. You will have time to discuss the clinical trial with your doctor and research team. Your cancer doctor and your research team will help guide you through this process to make sure you understand everything that is involved in the study before you agree to join.

The printed documents explaining the study are often long and have quite a bit of information about the clinical trial plan; they are designed to protect and advise you about the potential benefits and risks of participating in the study. This is why the study team and your doctor will meet with you and go over the contents of the documents and answer any questions you have. If, after having all your questions answered, you feel comfortable moving forward with the trial, you will sign the consent form. It is important to know that this consent is not a contract and that you may decide to leave the clinical trial at any time for any reason.

Here are some good questions a patient can ask: • What is the treatment?

• What are these tests? Is that more than the standard of care?

• What are the potential risks, benefits, and side effects of participating in this clinical trial?

• How long will this clinical trial last?

• Where will this clinical trial take place?

• Will being enrolled in this study cost me anything?

• What happens if my health becomes worse while on this study?

• If I leave this clinical trial, with it affect my normal care?

• Is this a randomized clinical trial? If yes, what does that mean?

The research study team will answer these and any other questions you may have. It is important to remember that clinical trials follow all the ethical and legal requirements that apply to all medical practice. Participation is always voluntary, and you have the right to leave the trial at any time.

For more information about clinical trials, and to see a list of our open trials, please check out our website: For Patients – MHIR (mmcri.org)

Bladder Cancer Support Group

3rd Tuesday every

other month

5:30 - 6:30 pm 100 Campus Drive Scarborough,ME Conference Rooms 1&2 behind the cafe

Email: nnengland@bcan.org

Please join us for our Bladder Cancer support group. If you are a patient, survivor, caregiver, family member… all are welcome!

November 19th, 2024 January 21st, 2025 March 18th, 2025 May 20th, 2025 July 15th, 2025 September 15th, 2025 Join Zoom Meeting https://us02web.zoom.us/j/86063821211? pwd=MDVuTThkNStsUVpHTU9PK0JCWXVpdz09 Meeting ID: 860 6382 1211 Passcode: 028474

I saw my doctor today.

Did you ask your questions?

Yes! Thanks for helping me with the list.

Support from a Survivor When facing breast cancer, connecting with someone who knows what you’re going through can be a crucial form of support. Some challenges can only be understood by someone who has been there. The American Cancer Society Reach To Recovery® program connects you with a trained volunteer who is a breast cancer survivor. Our volunteers provide one-on-one support to help you cope with treatment, side effects, and more. With a convenient mobile app and website, you can connect and chat wherever and whenever.

Cancer is not just physical, it’s emotional “and psychological. You have moments where you wonder if your feelings, thoughts or emotions are normal.

Speaking to survivors validates these feelings.

”

– Meagan F., Survivor & volunteer

cancer.org | 1.800.227.2345

FIND A MATCH SIGN UP Create a profile on reach.cancer.org or our mobile app, ACS Reach.

MATCH See volunteers who faced a similar diagnosis CONNECT Chat, call, or message for one-on-one support To learn more, visit reach.cancer.org or search for ACS Reach To Recovery on Google Play or the App Store.

Volunteers do not provide medical advice.

Reach To Recovery is a free program. ©2023, American Cancer Society, Inc. No. 0807.87 Rev. 6/23 Models used for illustrative purposes only.

Cancer and Careers’ Balancing Work & Cancer Webinar Series offers sessions related to the challenges of balancing work and cancer. All webinars are free to attend. The 2024 line-up includes topics critical to patients, survivors, and their care teams. Whether you’re looking for guidance on job search, help with setting boundaries or developing your communication skills, next year’s program has you covered on those and more. We hope you will join us for one, or all, of the topics!

Setting Boundaries Wednesday, October 9th, 6 PM ET/3 PM PT Balancing Work & Caregiving Wednesday, November 6th, 6 PM ET/3 PM PT Self-Care: Practical Approaches at Work and Beyond Wednesday, December 4th, 1 PM ET/10 AM PT

Lifestyle Medicine 2024 Nutrition Classes

Session Dates

FREE! Classes meet the 1st Thursday of the month from 3 to 4 pm

Nov 7 How to Create a Healthy Dessert- Take care of your “Sweet Tooth” with recipes that are low in sugar and high in fiber, learning how to replace fats and sugars in baking, fiber

Dec

No Class

Stay Tuned for the 2025 Schedule!

IN PERSON

(MaineHealth Falmouth)

Registration

VIRTUAL Registration

Courtesy of The High Protein Cookbook for Muscle Health During Cancer Treatment from researchers at the University of Alberta.

Access HERE. Wilson HA, Armet AM, and Prado CM. 2022. The High Protein Cookbook for Muscle During Cancer Treatment. http://openeducationalberta.ca/ proteincookbookforcancer

What’s New at MaineHealth Cancer Care

Dr. Michael Auster Joins Breast Care Team

As a graduate of the Doctor of Osteopathic Medicine program at the University of New England in Biddeford, ME, we’re very fortunate to have Dr. Michael Auster return to our state to provide cancer care. He is board certified in internal medicine and has a particular interest in solid tumor oncology, specifically breast oncology. Dr Auster is a professional member of the American Society of Clinical Oncology, as well as the American Society of Hematology.

Dr. Auster with daughters Vivian, front, and Jane, top, on Nantucket this summer

Dr. Michael Auster

Dr. Auster recently shared: “I am so happy to join MaineHealth as the new breast oncologist after completing internal medicine residency and hematology/oncology fellowship at the University of Texas Health Science Center San Antonio. During my fellowship, I studied and trained under physicians who are leaders in breast oncology, the directors of the San Antonio Breast Cancer Symposium. They sparked my passion for treating breast cancer patients with the newest advancements in the field and tailoring treatment to each individual person. I am excited to bring my expertise to Maine, and to advocate for a wonderful community I grew to love while going to medical school at the University of New England.

Although I love being a provider, my biggest joy comes from my two daughters, Vivian and Jane, who are 8 months and 3 years old. They take up my most of my time, but when I do have downtime, I love to cook and bake.”

Please join us in welcoming Dr. Michael Auster to the MaineHealth Cancer Care Network. Dr Auster will be seeing patients in both our Brunswick and South Portland Cancer Care locations.

How Data Helps in Cancer Care

By Cynthia Hayward, ODS-C, Maine Medical Center Cancer Registry Supervisor What is a Cancer Registry?

A Cancer Registry is an information system designed for the collection, storage, and management of data on persons diagnosed with cancer. Registries play a critical role in cancer surveillance, which tells us where we are in the efforts to reduce cancer burden.

Surveillance data may also serve as a foundation for cancer research and is used to plan and evaluate cancer prevention and control interventions.

By Maine state law, all cancer registries must submit data to the state’s cancer registry.

Additionally, hospital cancer programs accredited by the Commission on Cancer (CoC) submit their data to the National Cancer Data Base (NCDB) annually.

What is an Oncology Data Specialist?

An Oncology Data Specialist (ODS) is a data collection specialist who paints a holistic picture of a patient’s medical history by looking at the diagnosis, treatment, and disease status for each patient. This process is a vital component for supporting care providers, centralizing cancer treatment details from various systems, and providing summarized statistics for patient trends. Together, the Maine Medical Center Registry team maintains a data system which is designed for the collection, management, and analysis of data on individuals diagnosed with cancer with the goal of improving the overall care we provide.

For more information, check out the following: ~ What is a Cancer Registry? ~ What Is A Cancer Registry Video (ncra-usa.org)

What’s New at Maine Medical Center

Creative Fundraising by Team ENT Oncology Warriors

By Amy Litterini, PT, DPT

A dedicated team of athletes from the MaineHealth Ear, Nose and Throat Care in Scarborough combined their forces to raise $4,669.01 in a most creative way for Maine Cancer Foundation’s Tri for a Cure. ENT surgeon Christina Mimikos, nurse navigator Amber O’Leary, and nurse assistant Amanda Fierro worked with gifted quilter and ENT nurse practitioner Abby Vopal who created a beautiful quilt for them to raffle.

Each piece of quilted material was donated in honor of someone who’s battled cancer. The winner of the quilt, ENT nurse Marc O’Regan, donated the quilt back to the MMP otolaryngology clinic.

Tri for a Cure is a women's only triathlon that raises money for cancer in the state of Maine. Amanda swam a third of a mile, Dr. Mimikos biked 15 miles, and Amber ran 3.1 miles. Great job, Warriors!

July 14, 2024: After a successful Tri for a Cure race in South Portland, from left, Dr. Mimikos, Amber O' Leary and Amanda Fierro

Above left to right: Dr. Christina Mimikos, Amber O’Leary, Amanda Fierro, and Marc O’Regan

What’s New at Maine Medical Center Lymphedema Care in Biddeford

By Madison Johns, PT, DPT, CLT

I am the newest certified lymphedema therapist at MaineHealth physical, occupational, and speech therapy in Biddeford, Maine. I am originally from Indianapolis, Indiana, but moved to Maine four years ago to get my doctor of physical therapy degree at the University of New England. I loved Maine so much after graduating that I decided to stay!

I was first introduced to lymphedema therapy when I was a student at the clinic where I now work. Kaylee, who is now my coworker, mentored me in lymphedema therapy and how we, as physical therapists, can help. I’ve since attended an intensive training course through the Academy of Lymphatic Studies, and became a certified lymphedema therapist by learning hands on skills to manage swelling. Now, Kaylee and I work as a team to help those with lymphedema have the tools they need to manage this for life.

From Left: Madison Johns and Kaylee Kelley

MaineHealth Represented at National Conference Washington, D.C.

From Left: Rae Egbert and Amy Litterini

MaineHealth staff recently met with key stakeholders from across the country at the National Behavioral Health Network for Tobacco & Cancer Control and the National Council for Mental Wellbeing joint session. Members of MaineHealth participated in a six-month program hosted by the National LGBTQ+ Cancer Network. MaineHealth’s Director of LGBTQ+ Health, Rae Egbert, and MHCCN’s Program Manager of Survivorship, Amy Litterini, represented Maine by presenting a poster of the team’s work on tobacco cessation and data collection. Other members representing Maine included Becky Pearce and Kat Roberts of the Maine CDC’s Comprehensive Cancer Control Program.

What’s New at Brunswick Cancer Care

Mikala Bousquet Advocates for Funding and Care Access for Cancer Survivors at American Cancer Society’s Leadership Summit and Lobby Day September 17, 2024 Washington, DC

Brunswick Cancer Care’s own Mikala Bousquet, oncology social work navigator, recently went to Capitol Hill to advocate for cancer survivors of Maine. Mikala joined a group from Maine’s Cancer Action Network (CAN) of the American Cancer Society to show support and have our survivors’ voices heard by the legislature regarding funding for cancer screening and other programs. Read the full press release here: Cancer Patients and Survivors Urge Congress to Make Cancer a National Priority - Cancer Health. If you’re interested in learning how to get involved, please go to www.fightcancer.org

The Maine Team heading to the Hill

Mikala’s message of support for our survivors at the annual Lights of Hope event

From left: Julia MacDonald, ACSCAN Government Relations Director; Mary Lou Warn, Volunteer; Carol Pesti, Volunteer; Mikala Bousquet, State Lead Volunteer

Memorial Oncology Patients Benefit from Successful Golf Tournament

By Carrie McLane Burkett Communications and Development Manager, MaineHealth Memorial Hospital

More than 140 golfers and 33 sponsors helped Memorial Hospital raise over $50,000 toward the Oncology Patient Relief Fund. The Hospital’s 44th annual Golf Tournament was held July 18 at the Wentworth Golf Club in Jackson, N.H. “The Oncology Patient Relief Fund was inspired by a need identified by the oncology department,” said Director of Development Dawn Morrison. “Our patients sometimes run into barriers. This funding gives us the flexibility to help with anything that may be preventing them from following through on their treatment plan.”

“Cancer is very prevalent in the valley,” said Kathy Munroe, Clinical Supervisor of Oncology. “More than people probably know. Having this fund has been a huge help to people in a lot of different ways.”

Team Northway Bank, including golfers Pete Gagne, Vikki Corbridge, Ed Harrigan, and John Difeo, took first place for the mixed flight. The Coleman Companies Ladies Team, including golfers Sheri Coleman, Alanna Infinger, Stacey Burke, and Stacey Patell, took first place for the ladies’ flight. Team HEB, including golfers Sean Perley, Torrey Adair, Kevin Hamlin, and Josh McAllister, took first place for the men’s flight.

“We had a conversation with a private donor who was looking to give back after an experience his wife had there,” said Morrison. “The donor was happy to contribute funds to start this program and we have been able to help many of our patients already.”

This year’s golf tournament had two tee times to accommodate the high demand from golfers. “We were strategic and fit several teams in for a fast-paced shotgun start in the morning, followed by a packed shotgun start at 1 p.m.,” said Paul Keane, co-chair of Memorial’s golf committee. “The weather was perfect. We were glad that so many people came out to support the hospital and the patients.”

Team HEB (below, center), including golfers Sean Perley, Torrey Adair, Kevin Hamlin, and Josh McAllister, took first place for the men’s flight. The Coleman Companies Ladies Team (below, left), including golfers Sheri Coleman, Alanna Infinger, Stacey Burke, and Stacey Patell, took first place for the ladies’ flight. Team Northway Bank (below, right), including golfers Pete Gagne, Vikki Corbridge, Ed Harrigan, and John Difeo, took first place for the mixed flight. Visit memorialhospitalnh.org/golf to see a full list of results and view a video with highlights of this year’s tournament. In the tournament’s 44 years, the event has raised well over $1 million, purchasing life-saving equipment, benefiting community health programs, and improving the patient experience.

The Coleman Companies Ladies Team

Team Norway Bank

Team H EB

Awareness & Events Calendar

October

Breast Cancer Awareness Month Metastatic Breast Cancer Awareness Day…13 Men’s Breast Cancer Awareness Week…17-23 Making Strides Mid Coast…19 Making Strides of Greater Portland….20 Save Your Breath 5K- Free ME from Lung Cancer…20

Pink & Pearl Awareness WeeksLast week of October, first week in November

November Lung Cancer Awareness Month National Lung Cancer Screening Day…9 Great American Smoke Out…..21

December Happy holidays!

Maine Medical Center’s Breast Care Center Recipient of Local Fire Department’s Efforts Tom Lafferty, 2nd District Vice President of Professional Fire Fighters of Maine, is leading the Portland Professional Firefighters Local 740 Breast Cancer Awareness fundraising initiative for 2024. A portion of the proceeds, after fees, will go to Maine Medical Center’s Breast Care Center. Click HERE or scan the QR code below to visit their store for ordering a cool T-shirt or sweat shirt. Thank you, Local 740!

EXPAND SURVIVORSHIP SUPPORT

Survivorship care is the process of anticipating and addressing immediate, long term, and late-stage effects from a cancer diagnosis and treatment over time. Because survivorship can have as many unique challenges as treatment, the MaineHealth Cancer Care Network (MHCCN) must expand our survivorship program.

You can give comfort to fellow cancer survivors by donating to a special fund dedicated to survivorship programming.

The MHCCN supports life beyond cancer — providing physical, emotional, and practical support for the unique needs of the growing number of cancer survivors.

We hope you will consider joining others by donating to the survivorship fund and help more people live life to the fullest.

www.mmc.org/survivorship-fund If you’d like to give back in other ways, such as sharing your care story, contact: Cary Gemmer, Cancer Care Philanthropy Liaison by calling (207) 661-7842 or emailing Cary.Gemmer@mainehealth.org

Thrive Survivorship Digital Magazine Archives

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