Thrive: Survivorship Digital Magazine, Vol. 2, No. 1

Thrive

Survivorship Digital Magazine Winter, 2024

Welcome to Thrive

January - March, 2024 Vol. 2, No. 1

Thrive Content and Editorial Team

Welcome to 2024! We hope you enjoy the winter 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

Amy Litterini, PT, DPT,

throughout 2024. This edition has a

Program Manager of Survivorship, MaineHealth Cancer Care Network

special focus on cervical and colorectal

cancer awareness.

Laurie Hyndman

Breast Cancer Survivor, Co-chair Patient and Family Advisory Council Pat Hager, MFA Freelance Writer and Editor

If you have any questions on our content, or ideas for articles in upcoming editions, please contact Amy Litterini at amy.litterini@mainehealth.org.

In this Issue Chapter 1 Survivor to Survivor Meet Heather…….5 Meet Jeanne…9 Collage Quilt Donation…14

Chapter 4 Care Coordination and Planning Becoming Digitally Empowered..34 Working Through Treatment…35

Chapter 2 Prevention, Chapter 5 Health Promotion Monitoring & Testing How to Build a Balanced Plate...37 Cervical Cancer Awareness…16 Eat to Beat Inflammation…39 Colorectal Cancer Awareness…19 Maine Survivorship Snapshot…21 Chapter 6 Network News National Survivorship Survey…22 News from our Partners…45 Chapter 7 Survivorship Resources Chapter 3 Assessment and Survivorship Resources Guide…58 Treatment Quiting Tobacco for Survivors…25 American Cancer Society…59 Cactus Cancer Society…61 Lymphedema Treatment Act…26 Runway for Hope…63 LGBTQ Cancer Network…27 Turning the Tide Retreat…64 Clincal Trails…28 Archive editions…66

“The snow is sparkling like a million little suns.” ~ Lama Willa Miller

Survivor to Survivor

Chapter

1

If you’re interested in being featured for a Survivor to Survivor story, please contact Amy Litterini at amy.litterini@mainehealth.org

Survivor to Survivor

Meet Heather

By Amy Litterini

I knew immediately when I learned her email address included the phrase “baby catcher” that I would be in for an interesting interview. I recently had the pleasure of meeting with Western Maine resident Heather over video conferencing to talk about her cancer survivorship experience at the recommendation of Dr. Leslie Bradford, GYN Oncologist.

In her career as a midwife, Heather was an active, outdoorsy type who enjoyed nature, energy therapies, her family, and pets. Her most significant medical issue was arthritis, for which she had foot surgery in 2013. At the age of 63, Heather had an onset of vaginal discharge.

In October 2017, she had vaginal pain along with the discharge, and was told she was experiencing vaginal dryness due to her age. As a midwife, she knew that wasn’t normal and that she needed to be assessed. She saw her primary care physician the following January and was scheduled for a hysteroscopy and a biopsy in Heather at home in Parsonsfield, Maine New Hampshire. That February, 2018, the diagnosis of uterine cancer was identified. She had a complete hysterectomy (removal of the uterus) and oophorectomy (removal of the ovaries) in March, 2018, and was diagnosed with stage 1 cancer, with a 1% chance of recurrence. She continued to have some bleeding and pain, and in June 2018, she ultimately saw Leslie Bradford of The Maine Medical Partners GYN Oncology Program. She did an MRI and found that there was metastatic tumor between the bladder and the rectum, which was non-operable.

Heather was subsequently recommended to have external beam radiation therapy, and thankfully, those 35 treatments resulted in no evidence of disease on followup MRI. Unfortunately, Heather experienced residual damage to her vagina and a section of her colon. She had some long term effects that became chronic, including pain, bowel and bladder frequency and urgency, gastroenteritis/ulcerative colitis, and irritable bowel syndrome. She tried limiting herself to a bland/no spice diet, which also included no fiber or fresh fruits or vegetables, with some success. It did, however, limit her ability to eat out in restaurants. She also had radiation Heather in the hyperbaric oxygen chamber fibrosis in her vagina, making it essentially impossible Continued Next

to have vaginal intercourse. She saw three excellent pelvic floor physical therapists who attempted to address the painful internal spasms and dilate her vagina. Dr. Bradford did pelvic exams under anesthesia with the intention of stretching the vaginal opening. For the deep wound causing rectal bleeding and ulcerative colitis, Heather qualified for hyperbaric oxygen treatments (which can help support healing of damaged tissues in certain circumstances). After 79 sessions, each with a three-hour commute, she had no significant improvement.

Being an herbalist, and interested in naturopathic treatments, Heather ultimately sought different mechanisms of support. She states, “Everybody's journey is different.”

She began weekly counseling, which ultimately transitioned to monthly sessions. She takes soaks in the bathtub, which she finds very helpful. She uses heating pads, a peri bottle, and she makes her own salves as an herbalist. She sometimes goes pantless, since sneezing and coughing can burn and this seems to help. She also has tried acupuncture and massage therapy. She also gives herself Reiki, as she’s a Reiki practitioner.

She has lots of good friends, a large family, and furry friends for support (she has 11 grandchildren and 11 grand dogs!). Her loving husband Dana is also very supportive. “We joke a lot…he makes me laugh, which is great.”

Unfortunately, her hyperbaric oxygen treatments resulted in cataracts which she had to have surgery to correct. And since all of her health concerns, her husband has also struggled with blood clots in his lungs, a connective tissue disorder, as well as his own cancer diagnosis of leukemia in May, 2022. He also has progressive hearing loss due to Meniere’s disease (an inner ear disorder). Heather is now his “ears” and his advocate, and manages his extensive health care, doctor’s appointments, medications, and all phone calls.

According to Heather, “One of the hardest hurdles was being told by a radiologist that I would never get better. An oncologist told me I had the worst case of tissue damage they had ever seen, and a pelvic floor physical therapist told me Heather and Zoey with some of her grandchildren there was no hope for my vagina.” In spite of the hand she’s been dealt, Heather has been able to find acceptance and strategies to cope.

Continued Next

“I’ve had to accept my new reality, but I’m grateful to be here.” Her strategy is really one of self-advocacy and she ultimately realizes that sometimes you need to fight to get the help you need, or to expedite that help. She is an optimist, and channels her attitude of gratitude.

Heather also enjoys doing shadow work, which is a concept that encourages exploration of the side of us that stays hidden or repressed, and integration of it with our conscious self.

She also uses a spiritual checklist. Envision a list of the things you want to do in the left column, with corresponding things to practice in the right column. Some examples are: if you want acceptance, you should practice unconditional love; if you want adventure, you should practice spontaneity.

Heather’s mother Shirley (now 91), and her Golden Retriever Zoey, are also cancer survivors. They were both diagnosed the same year as Heather, in 2018. That same year a grandson, Oak, was born.

Above: Heather at home with Zoey.

Below: Heather with her mother Shirley, left.

Heather especially loves to be a Nana, and plays games with Oak weekly.

She hopes that by sharing her story of resilience and ways of coping, she can inspire other survivors to ask for help when needed, and explore different options to provide support in recovery.

Survivors Giving Back

Meet Jeanne

Amy Litterini: Jeanne Davidson was my first physical therapist (PT) mentor as a new graduate in 1994. We have been dear friends ever since, and along the way she became a breast cancer survivor. In 2022, she became a volunteer model and advocate for our survivorship education at MaineHealth, and we sat down recently to capture her story.

Jeanne: I had a long, happy career as a practicing PT for 40 years, and recently retired. I loved PT since I was a high school junior, and I knew that was going to be my career. Orthopedics was a special love of mine, so I after I got my BS degree, I attended an orthopedic residency program in manual therapy. I then taught in that program, as well as specialized in treating patients with spinal diagnoses.

I later earned my DPT in 2005 from Mass General Hospital. My last job was at York Hospital in York, Maine, and I was there for 25 years as a senior therapist. It was a wonderful opportunity to be able to treat patients, develop programs, mentor staff and PT students, and to get to know the community on a whole different level.

I got diagnosed with invasive ductal carcinoma of the breast when I was 46 in July 2004. When I got the diagnosis, I just was stunned saying, “Oh my God, I've got cancer. That little lump was bad.” I was very fortunate to have it be a small lesion, 1.3 centimeters. It was Grade 1, and my prognosis looked good that there would likely not be lymph node involvement. My whole overview was that it was a piece of tissue that went bad, and I was glad that it wasn't a piece of tissue that carried a big function. I'm a physical therapist. I value health and I value function, and I looked at this lesion as being in a piece of tissue that was not vital.

It was not a vital organ…to me, it was just gland tissue. I just needed to get rid of this diseased tissue. That was my thought, and Jeanne Davidson, PT, DPT, during a I wanted to get back in the game of life of being happy, healthy, modeling session for education handouts at functional, and doing all the things I enjoyed. So in working with the Breast Care Center in Scarborough my doctors, the treatment options given to me were the standard of care at that time (and still are), surgery as the first-line. The first option was lumpectomy with a wedge resection and then followed up with radiation. My goal was to do a treatment that was definitive and get me back in my game as quickly as I can. A second option, although not as common for my small lesion, was a mastectomy. It would avoid the need for radiation as long as the chest wall tissue came back negative, and as long as there would be no lymph node invasion. So I knew if I chose a mastectomy, I would have definitively gotten rid of the tissue that went bad, and I could be done with my journey. I could eliminate the radiation, have a quicker rehab, and thank God that I could get out of these dark woods quickly. The third option would have been mastectomy with reconstruction to replace the breast and make me “whole” again. My first thought was having an artificial breast put back on me does not make me whole, so that was not something that appealed to me. Knowing other friends and patients who went through journeys with reconstruction at that time, I knew it involved going through a process of having expanders and Continued Next

injections to stretch the tissue and then you go through surgery to place the implant, then you have to go through rehab. And I just knew, “no thank you”. This was not a road for me. I wanted the mastectomy, and that was my choice, and my loving husband of 16 years fully supported my decision. So, I had my surgery on June 9, 2004, a left modified radical mastectomy with sentinel node biopsy. When I awoke in the recovery room, the first question I asked my husband was if the lymph nodes were negative, and he told me “yes, everything was good”. That's when I said this is a 10K race, not a marathon, because I knew I was blessed to be out of the woods, to not need to go onto a chemotherapy journey. Postoperatively, I healed, and I went through PT with one of my colleagues at York Hospital. I had so much love and support from my family, neighbors, friends, and co-workers at the hospital throughout my journey. And, I have to give a big shout out to Amy Litterini because she has been with me on this journey not only as a friend, but working in the field of oncology she was a great support and also had great resources for me in making my decisions and getting second opinions. I went to Dana Farber, where my history and tumor pathology data were reviewed. My lesion was ER (estrogen receptor)/PR (progesterone receptor) positive, and HER2 negative. This combination carried a good prognosis. In addition to the mastectomy, a bilateral oophorectomy (removal of the ovaries) was recommended to shut down the biggest supply of estrogen in the body, followed up with the medication tamoxifen for five years. With this approach, the likelihood of recurrence was 6% in my lifetime, so I was really happy with my choice.

In July of that year, while I was still off recovering from my mastectomy and letting tissues heal, I had a bilateral oophorectomy, which went well. I was back to work right after Labor Day. I felt I was one very blessed woman to have had a short, three-month journey, and a very good outcome for the future.

My family history was that my mom is one of six daughters. My mom had breast cancer when she was 68, my Aunt Mary had breast cancer when she was 73, my Aunt Martine had breast cancer at 70. My dad's only sister, Aunt Gingie, was diagnosed with breast cancer at 68 and died of metastatic disease. Then in December, 2004, my older sister Rindy (a nurse) got diagnosed with a small, lymph node negative breast cancer lesion at age 50. With our family history, a bilateral mastectomy was recommended, and she also went through genetic testing for the BRCA 1-2 genes and both came back negative. Her oncology team at Yale recommended that I reconnect with my genetic counselor to reconsider the risk of recurrence in my non-operated, healthy right breast.

With two opinions from Dana Farber and Exeter Hospital, I was subsequently given a 60% chance for risk of recurrence in my lifetime of being diagnosed with a lesion in my right breast. I was given two choices of treatment. The standard of care recommended was surveillance: in six months have a mammogram, the other six months have a breast MRI. So two times a year I would be monitored for life to surveillance in case any tissue became cancerous. Or, have a prophylactic right mastectomy. Again, it’s all about function for me, and about a definitive solution to the problem.

So, I opted for surgery. After a denial from the insurance company followed by letters of support, in December, 2005, I had a breast MRI to ensure there was no disease, then I had my right breast removed.

From June 2004 – December 2005, I was happy with wearing a bra that had a little pocket for either a foam or a silicone “falsy” prosthetic. I was symmetrically matched to my right breast. And Continued Next

it didn't bother me at all to just put the left falsy in my bra every day. Then in December 2005, when I had that second mastectomy I became completely symmetrical and flat. I loved the freedom of either wearing a bra or not wearing a bra. I don’t use two falsies; I just wear a standard brand bra that has pre-formed cups if I want to wear an outfit that augments the chest. I love being flat! I love being symmetrical! So, when I look back all these years, I’m so glad to have opted for having the second mastectomy done. It provided me with symmetry, with the freedom of being flat, and with the option of wearing a bra with cups. I am happy to this day with my decisions, and I have no regrets.

In May, 2015, my youngest sister Monica was diagnosed with a more aggressive breast cancer at age 50, which required treatment with surgery (resection and bilateral reduction), chemotherapy, and radiation. She's doing well now.

The one other thought that I have on being a PT, and on valuing function, is that I wanted to be able to support any woman who’s making a decision and finds herself in these dark woods. I’ve met with women who are thinking about mastectomy, and I showed them what a mastectomy looks like and what a mastectomy bra and breast falsy looks like. I'm also glad to have been able to show a double mastectomy because it helped a couple of women make their decisions for it, or against it. It helped some women to know that they would like to have reconstruction. As you go about making your decisions, just know there's plenty of options out there. It's a very individual and personal matter. You need to do what works for you, and your health of having the best prognosis.

Amy: Body image can be a significant issue in cancer survivorship. Can you describe your attitude about body image and how your relationship with yourself before and after your surgery impacted your decision-making process?

Do you mind sharing more about that?

Jeanne: I can think of three things from my younger years that have contributed to my body image. First, my sister Rindy and I chuckle about this because our mom, who was also a nurse, was an influence on our thinking of body image as little kids. We could remember Rindy saying, “I don't like my freckles”. And my mother would say, “be lucky that you have good, healthy skin.

There are kids that have had burns and don't have normal skin”. Or I remember commenting, “Mom, I don't like the big bulging veins in my leg”. She would say, “be lucky that you have good working legs, some kids don't have legs that allow them to walk or run”. She may have given us dramatic, overboard responses, but her message was true: we needed to be grateful for being alive and healthy and not to put emphasis on superficial looks about our bodies. I feel very lucky to have had her influence regarding body image. Second, I never had big breasts in the first place. My breasts were an A plus cup. When I read the pathology report from my removed left (cancerous) breast tissue, I looked at the weight. My little breast weighed only 9 ounces! This finding gave me more confirmation in my choice to forego reconstruction. I would have had to undergo a bigger, longer journey to replace that 9 oz of tissue! Again, no thank you. And, the third and last thing may sound silly to some folks: I never liked to play with Barbie dolls growing up, which carried a big influence on body shape and image for little girls. Instead, I loved playing with troll dolls, with their Continued Next

smiling little faces, big set eyes, and colorful upright hair… and they have flat chests! I loved them, and I have a collection of them. I can’t help but think that those troll dolls played some role in my relationship about body image.

Amy: I know you say yes to me for things because we're friends, but I asked you to do several things now for our survivors, and even mastectomy scar massage pictures, right? You've done it all…you've done a lot for our program.

You've done three long patient education handouts for us, the post-op breast exercises, the scar massage instructions, and the head and neck exercises. So having done all of those favors for your old friend, what does it mean to you to be able to do that? I mean, I appreciate you saying yes to me when you didn't have to, but…

Jeanne: Amy, it gives me a very satisfying feeling to be able to give something of myself and my journey that can impact other patients who are facing a similar situation of being diagnosed with breast cancer. Whether they are beginning their journey, on their journey, recovering from a journey and in the rehab phase, I want each survivor to get the best outcome they can. And if my own cancer story, or my participation in the making post op rehab handouts can help one other survivor on their journey, I am grateful for that. Knowledge is Power; sharing my knowledge to empower a patient on their journey and recovery is fulfilling to me.

Amy: Knowledge is power and I couldn't have picked a better individual from the perspective of your personal history and your cancer journey, but also your extensive professional expertise in promoting the exercise component, so I am so thankful to you for doing this for me. This interview is now one more thing that you're doing!

Jeanne: I am more than happy to give any of my time, effort, knowledge, and personal history to help better the lives of a person undergoing cancer treatment. I also want to mention my husband Bob, who helped in my decision making. He values health and was in full support of minimally invasive procedures. He was with me on this journey all the way. He knew the treatment options were my decision to make. He loves me whether I have breasts or not. I also need to mention one last thing. I am a faith-based person and I believe in a loving God who is watching over us and beside us throughout our life’s journey. I believe in the power of prayer, and I am grateful to all those people who were praying for me and with me during my cancer journey. I am grateful for the positive outcome that I achieved.

Jeanne with her husband Bob, left, at home in York Beach

Collage Quilt Wall Art Donated to Breast Care Center Currently on display at the Scarborough Campus, special thanks to C.A. Readio!

Prevention, monitoring and routine testing for new cancers, cancer recurrence, and/or late effects of cancer treatment Prevention Monitoring

Routine Testing

Chapter

2

This quarter, we feature cervical and colorectal cancer awareness, the Maine Survivor Snapshot, and the State of Survivorship National Survey.

January is Cervical Cancer Awareness Month A perfect opportunity to raise awareness about cervical cancer, options for effective screening, and HPV vaccination.

By Kelly Holland, RN, Leslie Bradford, MD, MMP Division of Gynecology Oncology In 1928, cytopathologist George Papanicolaou, presented “New Cancer Diagnosis”, a short manuscript outlining his theory that malignant cells, sampled from vaginal fluid, demonstrated certain, identifiable characteristics that distinguished them from benign, non-cancerous processes.1 Papnicolaou then partnered with pathologist Herbert Traut to further refine the process of performing and fixing the “smear”. Nearly a century later, the basic premise of the “Pap smear” - analysis of exfoliated cells - serves as the basis for large-scale cervical cancer screening.

With the institution of cervical cancer screening, the incidence of cervical cancer in the US has decreased by over 50%.2 Effective screening for cervical cancer has reduced the risk of death (mortality) by more than 80% among screened women.3 Globally, cervical cancer is the second most common cancer and second leading cause of cancerrelated mortality among women.4 While cervical cancer incidence and cancer-related mortality has decreased dramatically in high-income countries with national screening programs and/or robust healthcare infrastructure, 80% of cases occur in middle- and low-income countries lacking these resources. A well-organized program is an essential component of cervical cancer screening. Even in the US, black women over the age of 50 are disproportionately affected by cervical cancer, with an incidence of 12.4 cases per 100,000.2 There have been multiple studies demonstrating the pitfalls of current cervical cancer screening strategies in the US, reporting that 11% to 51% of women diagnosed with cervical cancer had never had prior screening, and 19% to 36% did not have screening between 3-5 years before their cancer diagnosis.2 Under-screened populations include women who have immigrated to the US, minorities, low socioeconomic status, women with multiple chronic conditions, and/or women lacking medical insurance.

The Role of HPV Three decades ago, human papillomavirus (HPV) was discovered by Harold zur Hausen, a German virologist (2008 Nobel Laureate in Medicine), and colleagues. This has led to a rapid advancement and improvement in our understanding of the virus and its role in the development of invasive cervical cancer. Notably, the association between certain high-risk, or oncogenic, strains of HPV (hrHPV) and cervical cancer is now well established, with HPV infection implicated in over 99% of squamous cervical cancers.5 Papillomaviruses are ubiquitous. There are more than 100 HPV subtypes, but not all infections result in invasive carcinoma. For instance, HPV 6 and 11 are considered low risk subtypes that can cause condyloma. Other low risk strains include 42, 43, and 44. Fourteen high-risk subtypes have been identified that can cause cervical cancer, including types16,18,31,33,34,35,39,45,51,52,56,58,59,66,68,70.

HPV testing compared to conventional cytology HPV testing and typing as a primary method of screening is now recognized as an alternative to Continued next

Continued from previous cytology-only and co-testing (a pap plus HPV testing). While being implemented in Europe and Australia, the use of HPV testing as a primary mode of cervical cancer screening in the US has yet to come to fruition, although many speculate there will be upcoming changes to the US screening and treatment guidelines.

Currently, the American Cancer Society recommends that cervical cancer screening should begin at age 25. Those aged 25 to 65 should have a primary HPV test every 5 years. If primary HPV testing is not available, screening may be done with either a co-test that combines an HPV test with a Pap test every 5 years or a Pap test alone every 3 years. The American College of Obstetricians and Gynecologists (ACOG) and the US Preventive Services Task Force (USPSTF) recommend that screening for cervical cancer be performed every 3 years with cervical cytology only in women aged 21 to 29 years. This is because women under 30 are more likely to effectively clear an HPV infection and co-testing can result in unnecessary procedures for this young cohort of patients. For women aged 30 to 65 years, the USPSTF recommends screening every 3 years with cervical cytology alone, every 5 years with high-risk human papillomavirus (hrHPV) testing alone, or every 5 years with hrHPV testing in combination with cytology (co-testing). Not all insurance carriers cover primary HPV testing at this time, so check your plan and discuss with your healthcare provider which screening strategy is best for you.

Vaccination We would be remiss to discuss cervical cancer and screening strategies without commenting on the critical role of vaccination. HPV vaccination is a means of primary prevention in women who receive it prior to onset of sexual initiation. Because HPV is a sexually transmitted virus, and the peak prevalence of HPV is approximately five years after the median age of sexual initiation, to be most effective, vaccination needs to occur prior to sexual initiation. Therefore the US Centers for Disease Control and Prevention (CDC) recommends HPV vaccination for males and females starting at age 11 to 12 [5].

Effective vaccination programs do work. As an example, Australia was the first country to introduce a publicly funded HPV vaccination program via school based vaccination programs in 2007. This program achieved a 70% vaccination rate within the first year and has remained constant over a 10-year period [6].

Their data showed the prevalence of infection from HPV subtypes covered by the vaccine decreased, as did anogenital warts and cervical precancerous lesions. Australia is currently on track to eradicate cervical cancer by 2035.

Here in Maine, will 81% of women ages 21 to 65 have had a Pap test within the past 3 years, but only 45% of 13 year-olds in Maine are vaccinated against HPV. Even with a well-established healthcare infrastructure, our vaccination completion rate is suboptimal and lower than the national rate of 51% [7].

HPV vaccination will continue to change the landscape of cervical cancer cases and disease burden. While the Pap test has had an incredible impact on cervical cancer mortality, first as a smear and then as liquidbased cytology, HPV testing has emerged as a more sensitive screening test with greater global applicability. We predict that population-based screening will shift to this model, as it has in Australia and Europe, resulting in a greater ability to protect against invasive cervical cancer. Coupled with HPV vaccination, the effect should be profound. Given the natural history of persistent HPV infection, screening women results in a reduction in death from cervical cancer within 5 to 10 years, but another generation of women will need to be vaccinated to see true eradication of this disease.

This is a PREVENTABLE cancer. Please join us in raising awareness to keep the women of Maine safe, healthy, and cancer free.

References: HERE; Additional Resources: https://www.nccc-online.org/cervical-health-awareness-month/; https://foundationforwomenscancer.org/gynecological-cancers/gynecologic-cancer-types/cervical-cancer/ Someone You Love. Available at https://www.hpvepidemic.com/

January is Cervical Cancer Awareness Month

To learn more about cervical cancer from the Foundation for Women’s Cancer, click HERE.

March is Colorectal Cancer Awareness Month

To learn more: Resources For Patients | Colorectal Cancer Alliance (ccalliance.org) To learn more: Resources For Survivors | Colorectal Cancer Alliance (ccalliance.org)

Maine Survivorship Snapshot The US Centers for Disease Control and Prevention, Division of Cancer Control and Prevention

CDC- Using data from the Behavioral Risk Factor Surveillance System across multiple years, this data brief provides a snapshot of the prevalence of survivorship among adults in Maine and shares health inequities among survivors.

Access the full report HERE.

STATE OF SURVIVORSHIP 2023 Study Findings from In-depth Interviews and National Surveys of Cancer Patients, Survivors, and Caregivers The National Coalition for Cancer Survivorship (NCCS) conducts an annual State of Survivorship Survey, in partnership with Edge Research, to explore the cancer 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 everyone touched by cancer.

The research was conducted February through June of 2023 and builds upon findings from previous years to help NCCS understand the differences in survivor attitudes, experiences, and needs. This year’s survey also includes new questions to determine how caregivers align with and differ from patients regarding decisionmaking and satisfaction with cancer care. Additionally, the survey includes new questions about survivor and caregiver employment challenges after a cancer diagnosis.

Fifteen in-depth interviews and a nationwide survey of 2,345 survivors and caregivers were conducted, 536 of whom have a connection to NCCS. Survey respondents in the national sample represent a wide range of cancer types, stages of diagnosis, demographics, and socioeconomic levels, and NCCS used a sampling plan to ensure the survey was representative of cancer survivors and caregivers nationally by age, gender, race/ethnicity, and region (based on data from the American Cancer Society and National Cancer Institute). All data presented are from the national sample (n=1303 patients and n=506 caregivers) unless otherwise noted. Read the full report HERE. NEW THIS YEAR: • Included Caregivers to better understand their perspective, how they align and differ from Patients, and several questions specific to this audience • Treatment decision-making priorities • Working with cancer • Interest in prescription drug monthly payment plan • Advertising for cancer treatment • Integrative care questions for all

Assessment & Treatment

Assessment and treatment of long term or late effects of cancer treatment

Chapter

3

This quarter, we feature tobacco cessation, the Lymphedema Treatment Act, the National LGBTQ Network, and available research protocols.

Getting Help Quitting Tobacco is Important for People Diagnosed with Cancer

By David Spaulding, Sr. Program Manager for the Center for Tobacco Independence The word is out: using tobacco puts people at risk for all sorts of health problems, including stroke, Chronic Obstructive Pulmonary Disease, and Coronary Heart Disease, not to mention many kinds of cancer including lung, stomach, cervical, pancreatic, colorectal, and more. For people who use tobacco, quitting is the single best thing they can do for their health. This may be easier said than done, and the fact is it is normal to try to quit a number of times before quitting for good. But, research has found that generally speaking, people do better with assistance.

But what about people who have received a cancer diagnosis: is assistance available to these patients, and is it effective?

The answer to both questions is yes. Free evidence-based treatment is available to folks wherever they live. Residents of Maine and New Hampshire can take advantage of the Maine QuitLink and QuitNowNH, respectively, and both programs provide free medications as well as free coaching from specially trained Tobacco Treatment Specialists.

The National Cancer Institute in its Tobacco Control Monograph Series 23 states that not only does quitting tobacco use lead to improved health outcomes for patients with cancer, but it can improve their quality of life. Patients with advanced cancer who quit could experience improved circulation, lower blood pressure, improved appetite, and less fatigue.

Additionally, quitting tobacco reduces risk for additional cancers and improves the effectiveness of cancer treatment. Still, feeling pressure to quit tobacco could be stressful, so deciding to quit should be an individual decision.

Consider talking with your providers about the benefits of quitting. If you want to learn more about treatment services, your providers can refer you to the Maine QuitLink or QuitNowNH so you can talk with Tobacco Treatment Specialists and see if it is right for you. You can also call 1-800-QUITNOW to be connected to tobacco treatment.

The Center for Tobacco Independence (CTI) has operated the evidence-based Maine QuitLink program on behalf of the State of Maine for over 20 years.

New Coverage Through the Lymphedema Treatment Act As of January 1, 2024, Medicare will cover lymphedema compression garments

By Heather Ferguson, Founder & Executive Director, Lymphedema Advocacy Group

Lymphedema Treatment Act Final Rule Coverage Summary What will be covered: • Custom and standard fit daytime and nighttime garments.

• Custom and standard fit gradient compression wraps with adjustable straps.

• Bandaging supplies for any phase of treatment.

• Accessories including but not limited to donning and doffing aids, padding, fillers, linings, and zippers.

Frequency allowances: • Daytime garments - 3 sets (one garment for each affected body part) every six months, standard or custom fit, or a combination of both • Nighttime garments - 2 sets (one garment for each affected body part) every two years, standard or custom fit, or a combination of both • Bandaging supplies - no set limit in the rule.

• Accessories - no set limit, will be determined on a case-by-case basis depending on the needs of the patient.

Coverage requirements: • To be eligible for the above coverage, a patient must have been diagnosed with lymphedema and have a prescription for the compression supplies.

• The coverage will begin January 1, 2024. There will be no retroactive coverage, meaning, you cannot submit claims for any garments or supplies purchased or ordered before 1/1/2024.

Codes and reimbursement rates: • Starting next year, there will be 81 HCPSC codes specifically for lymphedema compression supplies, most of which are new, and the rule also outlines the process for the creation of additional codes in the future if needed. The corresponding reimbursement rates for these codes will be released soon and are not included in the rule.

Deductibles and copay: • For traditional Medicare -- these supplies will be covered under Part B, so the annual Part B deductible and 20% coinsurance apply to all compression supplies.

• For Medicare Advantage and all other types of insurance -- out-of-pocket costs will vary depending on the specific terms of your plan. It is likely that your compression supplies will be subject to the same copay and deductibles as supplies covered under the DMEPOS (Durable Medical Equipment, Prosthetic and Orthotic Supplies) section of your policy.

The final rule is a huge victory for patients, but our work is not done yet. Please visit our Take Action page if you have any insurance plan other than traditional Medicare and haven’t contacted your own insurance provider yet.

Support from the National LGBT Cancer Network Many LGBTQI+ individuals who have and have had cancer do not feel welcome or understood in mainstream support groups, and transgender survivors have been specially excluded. There are very few LGBTQI+ cancer peer support groups across the country, and those individuals who live further from major metropolitan areas are unlikely to find one at all. A study conducted by the National LGBT Cancer Network confirmed that LGBTQI+-specific support groups were the top request made by LGBTQI+ cancer survivors.

The National LGBT Cancer Network is currently running cancer peer-support groups. These are free Zoom peer-support groups for LGBTQ+ individuals who have or have had cancer. They are offered three times a week. Come hang out, say hi, talk about cancer, or about life. Click here to register and learn more: Cancer Support - National LGBT Cancer Network (cancer-network.org). Locally, Maine Queer Health is a program focusing on LGBTQ+ health access in Maine.

Breast Care Center Hosts Transgender Training for Staff The Breast Care Center in Scarborough recently hosted a Transgender educational session for their clinical care staff. The program included a presentation by Sebastiane Sacerdoti-Ravenscroft, consultant for the MaineHealth Diversity, Equity and Inclusion department, on the proper use of pronouns. The keynote speaker was Dr. NFN Scout, Executive Director of the National LGBT Cancer Network. Dr. Scout spoke about the unique healthcare needs of the LGBTQ patient population, as well as important considerations about pending legislation that has potential impacts on healthcare for LGBTQ individuals. The training ended with a roundtable discussion with clinicians from the Breast Care Center, Plastic Surgery, the Cancer Risk and Prevention Clinic, and the MaineHealth Gender Clinic.

Clinical Trials at MaineHealth Cancer Care Network

By Pat Hager, MFA, with Cyndi Marcotte, RN, Research Navigator If you think it is necessary to travel out of state to participate in a clinical trial and benefit from cutting edge cancer research, you may be interested to know that significant cancer research is being conducted here in Maine.

The MaineHealth Institute of Research has an array of clinical trials available within the MaineHealth Cancer Care Network (MHCCN). A clinical trial is a research study that involves people. Through clinical trials, doctors determine whether new treatments are safe and effective, and if they work better than current standard of care treatments. Clinical trials are critical to progress in treatments for cancer.

There are currently over 50 active oncology clinical trials available at MHCCN. The National Cancer Institute Community Oncology Research Program (NCORP) is a national network that brings cancer clinical trials and care delivery studies to people in their own communities. In 2019, MHCCN was awarded a 6-year NCORP grant which was the largest ever extended by the National Cancer Institute for clinical trials.

The NCORP network designs and conducts clinical trials in the following areas: • Cancer prevention • Screening • Supportive care and symptom management • Surveillance • Health-related quality of life • Cancer care delivery • Treatment trials MHCCN also offers clinical trials sponsored by pharmaceutical companies.

Today’s treatments are yesterday’s trials. Participating in a clinical trial opens the possibility to receive new and effective treatments that are not yet available to the general public. People are now living longer lives from successful clinical trials.

It is important to understand your options. Ask your doctor and your care team if joining a clinical trial is the right option for you. By looking at all treatment options, including clinical trials, you are actively participating in decisions that impact your care. Each trial has very specific guidelines that have been put in place for participants’ safety, therefore you may not qualify for certain clinical trials. Your oncologist and the cancer research team will explain what these guidelines are and if you qualify for a specific clinical trial.

Participating in a clinical trial is always voluntary. The MHCCN Clinical Trials Office wants you to make the choice that aligns with your values. You do not need to participate in a clinical trial, and you have the right to leave the trial at any time. Do not hesitate to ask questions; you are encouraged to ask questions throughout your treatment. Clinical trials follow all the ethical and legal requirements that apply to all medical practice. The next issue will include detailed information on the specific types of clinical trials are happening in Maine.

Do you experience physical or emotional pain related to your cancer or cancer treatment?  Pain* is one of the most common symptoms in cancer patients and one of the symptoms least likely to be adequately treated. *Pain: An unpleasant sensory and emotional experience that may include either physical pain and/or non-painful discomfort such as aching, throbbing, numbness, tingling, burning, etc.

 The IMPACTS Study Internet- delivered Management of Pain Among Cancer Treatment Survivors, is designed to help you manage your pain so you can enjoy your quality of life.  Cancer patients 18 or older who experience pain from cancer or cancer treatment are invited to discuss possible participation in the IMPACTS study.  Compensation for your time will be provided. In-person and remote areCode available!

Usevisits the QR below to get to a short survey that will show if this study might be a good fit for you. Based on your responses, you may be eligible to take part in the IMPACTS Study. Note: only patients seen at Sanford or South Portland Mainehealth Cancer Care Centers are eligible to participate.

Scan QR code with your phone’s camera to access a short survey.

For more information on this study, please email: Shelby Monahan: shelby.monahan@mainehealth.org

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Care Coordination

Care Coordination and planning includes communication and partnerships between the survivor and providers for ongoing survivorship care

Planning

Chapter

4

This quarter, we feature education resources to promote digital capabilities, and to support working during treatments

About Digitally Empowered™ Digitally Empowered™ was created by the Patient Empowerment Network (PEN), a 501(c)(3) nonprofit organization, and made possible with the support and collaboration of Pfizer Oncology.

Our mission is to fortify cancer patients and care partners with the knowledge and tools to boost their confidence, put them in control of their healthcare journey, and assist them in receiving the best, most personalized care available to ensure they have the best possible outcome.

Our programs enhance patient health literacy to enable shared decision-making and provide informational and educational resources to empower patients and care partners at every step of their cancer journey.

Digitally Empowered™ is a 10-module course designed to be taken in sequence, which means you need to start at the beginning with Learning Module 1.

Module 1. How Can Technology Help You Become an Empowered Patient?

Module 2. Navigating Healthcare Resources Online Module 3. Forming Your Online Disease Support Community Module 4. The Social Media Experience: Connecting with Patients, Advocates & Experts Module 5. Navigating Your Health with Electronic Devices Module 6. How Can Applications Aid Me in My Healthcare Journey?

Module 7. Just for the Fun (and Healing!) of It Module 8. Your Step-By-Step Guide to Using Telemedicine Module 9. Joining and Participating in an Online Disease Support Community Module 10. Putting It All Together To learn more and enroll, click HERE.

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!

Managing Long Term Stress Wednesday, January 24th, 1 PM ET/10 AM PT

Balancing Remote Work & Cancer Wednesday, February 7th, 1 PM ET/10 AM PT Career Shifting: Tips, Tools & Techniques Wednesday, March 6th, 6 PM ET/3 PM PT First Impressions: Resumes and LinkedIn Wednesday, April 3rd, 1 PM ET/10 AM PT Networking: Unlock New Opportunities Wednesday, May 1st, 1 PM ET/10 AM PT

Balancing Work & Nutrition Wednesday, June 5th, 6 PM ET/3 PM PT Balancing Work & Cancer Wednesday, July 10th, 1 PM ET/10 AM PT Communicating Effectively: Part 1 Wednesday, August 7th, 6 PM ET/3 PM PT Communicating Effectively: Part 2 Wednesday, September 11th, 6 PM ET/3 PM PT

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

Health promotion includes strategies such as healthy eating, physical activity, and stress management in cancer survivorship

Health Promotion

Chapter

5

This quarter, we feature nutrition information and available programming.

How to Build a Balanced Plate

By Amy Pearl, MA in Health and Wellness Coaching, BSN, RN, CWHC, Lifestyle and Wellness Coordinator, Falmouth Integrative Medicine Nutrition is an essential aspect of a healthy lifestyle. With so much misinformation and fad diets, one may ask, “What constitutes good nutrition?”. The good news is that good nutrition doesn’t have to be a daunting daily task. A healthy dietary pattern includes nutrient-dense foods from complex carbohydrates, quality proteins, and healthy fats. Replacing highly processed foods with nutrient-dense foods leads to better health outcomes. A healthy diet helps you reduce your weight, lower blood pressure, lower blood sugar, increase your mood, and studies suggest it can reduce risks of certain cancers and cardiovascular conditions.

An excellent place to start is to be mindful of your current diet and identify areas you want to improve. The Harvard My Plate provides individuals with a visual and interactive guide to creating a healthy plate. You will learn about the major food groups while focusing on the quality and quantity of that food.

Building a healthy plate starts with filling half your plate with vegetables and fruits. Choose fruits and vegetables that are bright in color; think of creating a rainbow. A fourth of your plate should be filled with lean proteins: lean fish, chicken breast without the skin, plant-based proteins (like tofu or beans), and limiting red meat and processed meats. The final fourth of your plate should be filled with complex carbohydrates, such as foods made with whole wheat, brown rice, and oats. Lastly, healthy fats add flavor and texture, provide your body with energy, and help with cell function. When adding fat to your meal, focus on the quality and quantity of the fat. Saturated fats lead to an increased risk of heart disease. The American Heart Association recommends replacing your saturated fats with unsaturated fats while focusing on portion control. A good rule of thumb is to remember that saturated fats are typically solid at room temperature (butter), and unsaturated fats are liquid at room temperature (olive oil). Using herbs and spices instead of saturated fats and salt can add flavor to your plate without the unwanted calories and adverse health effects.

Creating a nutritious meal doesn’t have to be stressful. Changing dietary patterns takes time.

Start with small goals: add a piece of fruit to breakfast, exchange red meat with chicken or fish, or reduce the amount of sugar in your morning coffee. Small goals set the foundation for sustainable nutritional changes, leading to better mental and physical health.

Healthy Eating Plate Harvard T.H. Chan: School of Public Health, 2023

Lifestyle Medicine 2024 Nutrition Classes

Session Dates

Jan 4

FREE! Classes meet the 1st Thursday of the month from 3 to 4 pm The Facts About Dietary Fat Why the body needs fats, healthy vs unhealthy, portion control, how to cook with them, quality and quantity

Feb 1

The Facts About Carbohydrates Why the body needs carbs, simple vs complex, quality and quantity, how to cook with them, fiber

Mar 7

The Facts About Protein Why the body needs protein, plant-based vs. animal, quality/quantity, how to cook with them, calculating your daily needs

Apr 4

How to Build a Balanced Plate-Harvard Plate Reading Nutrition Labels-Example and Quality and Quantity- Size plate, serving vs portion

May 2 Mindfulness Eating and Strategies- Learn to identify where your hunger is by using the hunger scale, learn tools to help support you in using mindfulness before, during, and after eating, and learn to identify hunger vs. appetite

June 6 How to Create a Healthy Breakfast- Learn how to balance a breakfast with complex carbs, protein, and healthy fats; Quality and quantity; On-the-go breakfast vs time to cook July 4

No Class

Aug 1

How to Create a Healthy Lunch- Learn how to create a balanced breakfast, quality and quantity lunch prep for the week, fiber

Sept 5 How to Create a Healthy Dinner- Learn how to create a balanced dinner using the Harvard plate, dinner prep for the week, quality and quantity , fiber

Oct 3

How to Create Healthy Snacks- Snacking portions and recommendations, how to read a nutrition label, creating snacks for on-the-go with quality and quantity, fiber

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

IN PERSON Registration

VIRTUAL Registration

Eat to Beat Inflammation!

By Judy Donnelly, RDN, LD| Nutrition Program Manager, Dempsey Center

“Inflammation” is a bit of a buzz word these days. It’s one of those things that can be helpful or harmful to health, depending on the type you are experiencing. Acute inflammation, which is your body’s response to an injury or infection, is an important part of the healing process and therefore helpful. The other type, a low grade, persistent form, is called chronic inflammation and science reveals that it can contribute to our risk of developing cancer and other chronic diseases, such as heart disease, type 2 diabetes and dementia. There are a number of factors that contribute to chronic inflammation, such as exposure to environmental toxins and autoimmune disorders. Lifestyle factors play a role too and one of them is what we eat.

It helps if we think about the human body like a car. Put diesel fuel in a car that runs on regular gas and you’ve got an immediate problem! The food we eat impacts how our body functions, but unlike a car engine, the impact can be gradual and may be hard to detect until symptoms begin to arise. While some foods help to fight inflammation, others consumed in a consistent manner can promote inflammation and increase our risk for developing chronic diseases. The following foods are thought to increase risk of inflammation: foods that are high in refined sugar and grains, deep fried foods, alcohol, red meat and processed meats, such as salami, bologna, hot dogs. While there is no evidence indicating that we need to eliminate these foods entirely, health professionals agree that minimizing intake of these foods and eating a variety of whole foods is an important health strategy to reduce risk of cancer and other chronic disease.

A great way to increase intake of anti – inflammatory foods is to follow the principles of the Mediterranean Diet ( https://www.mayoclinic.org/healthy-lifestyle/nutrition-andhealthy-eating/in-depth/mediterranean-diet/art-20047801) an approach to eating that celebrates whole foods and an active lifestyle. While it is not a vegetarian diet, it predominantly features whole, plant-based foods, complemented by animal foods and emphasizes the use of herbs and spices to add flavor and, you guessed it, additional antiinflammatory nutrients. What we eat matters and it’s never too late to make adjustments to your diet that can improve your health and well-being.

Want to learn more? The Dempsey Center is offering a program, virtual and open to the public, on the Anti-Inflammatory Diet. See our program guide (link to program guide) for additional information.

Here’s a recipe to help you get started! (see next page)

Network News

From Our Network Partners

Chapter

6

• Franklin Memorial Hospital, Farmington • LincolnHealth-Miles, Damariscotta • MaineGeneral Medical Center, Augusta • Maine Medical Center, Portland • Memorial Hospital, North Conway, NH • Mid Coast Hospital, Brunswick • Pen Bay Medical Center, Rockport • Southern Maine Health Care, Biddeford • St. Mary’s Regional Medical Center, Lewiston • Waldo County General Hospital, Belfast • Western Maine Health, Norway

Medical Oncology Fellowship Program Launched

By Dr. Vatche Tchekmedyian and Bethany Yale The 2023-2024 academic year was momentous for MaineHealth Cancer Care as we welcomed Drs. David Rabinovich and Harshil Bhatt to our new hematology and medical oncology fellowship as our inaugural fellowship class. Putting our training plan and curriculum into motion has been an exhilarating experience, and watching our fellows learn and grow has been a joy for all the educators in our system.

As we take a moment to reflect on this program, we are able to identify what makes it unique. One of the core aspects of our program is our weekly case conference leading into the Fellow’s Clinic. Every Tuesday afternoon, sandwiched between lunch and core curriculum didactics, Drs. Andrew and Vatche Tchekmedyian sit down with the fellows and review all the cases scheduled in the fellow’s clinic on Wednesday mornings. We discuss and debate relevant literature, decision making and follow up. On Wednesdays, the fellows take a primary role in obtaining history, patient centered decision making and enacting the plan.

In this way, we train our fellows to develop ownership, dedication, rigor Dr. Kimberly Toomire in evidence based medicine and caring.

As a program director, the mission of our fellowship has crystalized: Upon graduation, we want our fellows to be able to go to any clinic in Maine, no matter where, and take excellent care of the hematology and oncology patients in that community. This requires broad training and exposure, the opportunity to learn by doing and ultimately the ability to be both a general practitioner and subspecialist. That is the type of training we provide at MaineHealth. Through our exceptional core curriculum didactic series, the case-conference/Fellow’s Clinic model, and implementation of network wide conferences such as Morbidity and Mortality Conference, the fellowship has become the cornerstone of a Dr. Nicolas Alana budding academic enterprise at MaineHealth Cancer Care.

With that, we are absolutely delighted to welcome our second class of fellows Drs. Kimberly Toomire and Nicolas Alana. Kim completed her medical school at the University of New England College of Osteopathic Medicine and residency at Maine Medical Center where she currently services as Chief Resident. Nicolas completed his medical school at the University of Texas Health Science Center at San Antonio Joe R. and Teresa Lozano Long School of Medicine and internal medicine residency at HCA Portsmouth Regional Hospital/Tufts University School of Medicine. We are so excited to have these two exceptional physicians joining us for the next step in their specialty training.

Making Strides of Southern Maine

Keynote speaker Dr. Jillian Smith with daughter Kennedy, right, and son Zackery, left The Maine Medical Center/Southern Maine Health Care Team

Firefighters Raising Funds and Awareness Portland Professional Firefighters IAFF Local 740 wanted to find ways to support the fighters, admire the survivors, honor the taken, and never EVER give up.

Before Thanksgiving, they raised funds through the sale of their cancer awareness t-shirts and presented the $2,000 donation to the Maine Medical Center Breast Care Center to support cancer research and vital patient care.

We are grateful for these heroes who are helping to battle blazes as well as cancer in our communities.

For more information on how you can support MMC’s Breast Care Center, please contact MMC Philanthropy at 207-662-2669 or visit www.mmc.org/bcc

Lung Cancer Awareness Activities Hosted Across the Network Maine Medical Center: Scarborough Throughout the month of November, members of the Lung Screening Program and the Thoracic Oncology Clinic interacted with visitors to the Scarborough Campus. Topics centered on tobacco cessation and the role of lung screening.

Above: The MaineHealth Lung Screening Team, from left: Lori Newsome, center, Snow Tardif, and at right, Jessica Gill.

Southern Maine Medical Center In November, tabling events were hosted by the SMHC Cancer Committee and SMHC

Community Health Improvement program were held at the MaineHealth Cancer Care Network oncology practice in Sanford, the main lobby in Biddeford, and the lobby of Goodall Medical Office Building. The focus was on lung cancer awareness, and tobacco prevention and tobacco cessation.

Above: Program Management Specialists with Community Health Improvement in Sanford, at left, Haley Wood, at right, Reegan Hebert. Right: Reegan Hebert in Biddeford.

First Annual Teal Time Event Held With the help of Tracy Watts, RN, MaineHealth gynecologic oncology nurse navigator, The Dempsey Center and Danielle Sullivan from the National Ovarian Cancer Coalition were able to plan what we hope to be the first annual Maine Teal Time. On December 7th, we met at The Harraseeket Inn in Freeport with the goal of connecting Maine women with a shared experience. We had 20 participants (survivors, caregivers and community partners).

Dr. Jason Lachance, Director for the MMC Gynecologic Oncology Division of the Department of Obstetrics & Gynecology and Michelle Hayes, Oncology Social Worker at The Dempsey Center were our guest speakers.

About the National Ovarian Cancer Coalition https://ovarian.org/ For more than 31 years, the National Ovarian Cancer Coalition (NOCC) has been at the forefront of ovarian cancer advocacy, providing critical support and resources to those affected by this devastating disease. With a regional approach covering the entire United States, we strive to ensure that anyone diagnosed with ovarian cancer has the programs, tools, and resources to survive and thrive. We provide financial assistance, free meal delivery, clinical trial assistance, peer to peer support groups, access to professional counseling, inperson events, online education and more.

Interested in learning more about our local region or could you or someone you know benefit from our resources? Please contact Danielle Sullivan, National Ovarian Cancer Coalition, New England Regional Manager at dsullivan@ovarian.org.

Right, from left: Dr. Jason Lachance, Colleen O'Connor, LCSW, OSW-C, and Tracy Watts, RN

Left: Dr. Jason Lachance presenting the keynote session

Above, from left: Tracy Watts, RN, and Danielle Sullivan of the National Ovarian Cancer Coalition

What’s New at Maine Medical Center Holiday Cheer at 100 Campus Drive in Scarborough At left: “Rudolph’s Family Tree” by the Genetics Team At Right: “Stay Calm and Breathe” by the Thoracic Oncology Team

The Choice to “Go Flat” after Breast Cancer Breast Care Center’s Karen Phelps interviewed on surgical options for survivors A recent story on WCSH 6 featured a breast cancer survivor describing her surgical decisions as she navigated her new breast cancer diagnosis. Information is key when making life-changing medical decisions in partnership with medical providers on the care team. The choice to pursue reconstruction or not is a very personal one.

Offering the oncology professional’s perspective was Maine Medical Center’s own nurse practitioner Karen Phelps. Read the full story or watch the video segment here.

Karen A. Phelps MSN ANP-BC CBCN

What’s New at MaineHealth Cancer Care Brunswick

Welcome to Peter Westervelt, MD, PhD

By Cynthia Magnussen Cynthia: You recently joined the MaineHealth Cancer Care Network and Maine Medical Partners as a medical oncologist. Why did you choose MaineHealth to share your passion for oncology and cancer care?

Dr. Westervelt: My motivation to return to Maine stems from the fact that both my wife and I grew up in Central Maine, and a long-term goal has always been to return eventually. When I learned of the academically-modeled oncology program Dr. Scot Remick was working to build here, it struck a chord and we began a conversation that culminated in my joining the group recently. My role as I see it is to collaborate with an immensely talented group of people already assembled, working to build a program that would enhance the Peter Westervelt, MD, PhD opportunities for the patients that I treat with hematologic malignancies to receive cutting-edge treatment here in Maine, for which they would otherwise have to travel to Boston.

These include, for example, cellular immunotherapies therapies (CAR T cells), as well as expanding access to enrollment in clinical trials.

Cynthia: One of the MaineHealth Cancer Care Network goals is to provide care “as close to home as possible.” How do you think you can contribute to that goal?

Dr. Westervelt: Cellular immunotherapies like CAR T cells typically require close monitoring for a month or longer after administration, requiring patients to remain within a short distance from the treatment center to assess for and manage any treatment-related toxicities that arise. Obviously, this can create substantial logistical (and financial) hurdles for patients from Maine who would otherwise have to temporarily relocate, say, to Boston for up to a month or more (with a caregiver). Being able to offer this type of therapy within the state of Maine would therefore represent a major step forward in filling a currently unmet need.

Cynthia: What do you do for fun and/or relaxation in your spare time?

Dr. Westervelt: Enjoying good food and wine with family and friends. I also love playing hockey and skiing, and all things New England sports.

Cynthia: What is your favorite vacation spot?

Dr. Westervelt: Well I now live in what’s been my favorite vacation spot, so I guess I’m going to need to find new one...

You can learn more about Dr. Westervelt HERE.

The Harold Alfond Center for Cancer Care On Saturday, Oct. 7, the rain couldn’t hold back the Central Maine community as they gathered around their cancer survivors, fighters, thrivers and loved ones for an uplifting, inspirational Day of Hope. More than 1,000 community members came out to rally around MaineGeneral’s Harold Alfond Center for Cancer Care (HACCC) staff and patients, showing them no one fights alone.

Along with an emotional opening ceremony, Day of Hope attendees participated in education and prevention, including receiving screenings and therapies as well as a Food Pavilion with live cooking demonstrations. The fundraiser part of the program, a 1.8 mile-walk through the beautiful University of Maine at Augusta campus, raised more than $200,000 in support of the HACCC. Another key feature of the Day of Hope is the Survivor Space, where survivors, fighters and thrivers connect and share stories and memories with others who are going through a similar journey.

This was Jenn Kelly’s second year as the lead volunteer coordinator of the Survivor Space. It was an emotional part of her own journey to play such an important role in the Day of Hope.

In 2004, both of Kelly’s parents were diagnosed with cancer. And then, just five years ago, she also became a patient when she was diagnosed with Non-Hodgkin’s lymphoma. Even now, she says she has a hard time using the term “survivor” for herself.

“I was reluctant after finishing treatment to be called a survivor,” Kelly said. “I didn’t know what I was.” That’s why it was important for her that the Survivor Space gives everyone on their cancer journey a way to be recognized.

“Whether you’re recently diagnosed, are in the middle of treatment or have finished, everyone is coming from a different place. It’s a very emotional space,” she said.

Each person coming into the Survivor Space receives a sash to wear throughout the day. Sashes have different names on them: survivor, thriver or fighter.

“The choice depends on how you see yourself,” Kelly said. “Each person gets to decorate and personalize their own sash.” Kelly emphasized that all cancer patients and survivors are welcome in the Survivor Space, just as with the entire day of events.

Last year, she was struck by a gentleman who came into the Survivor Space. He seemed not to know what to make of the area. When she asked him where he was in his journey, he said he hadn’t yet had a referral with an oncologist. Kelly quickly found a HACCC staff member to help him.

“This year, he came by and asked me if I was the woman who helped him,” she said. “He let me know that moment changed the direction of his life. That was a special moment for me to be able to help someone in that moment.”

Kelly added enthusiastically: “Once you enter that Survivor Space, you become a lifer. It’s so amazing.

Sometimes there’s tears and sometimes there’s no words that need to be spoken. Those who are in the space have an understanding. Sometimes an embrace is all that is needed.

“We want everyone entering the space – survivors and their families – to know they are valued. We listen to everyone’s stories. We share a connection. We all have seen cancer in some form.”

Join Jenn Kelly and the rest of the Day of Hope volunteers and cancer center staff next year, Saturday, Oct. 5, 2024! Learn more about MaineGeneral’s Day of Hope HERE.

What’s New at St. Mary’s Empowering Our Community

Recently, St. Mary’s RNs Alice Staires and Rebecca Provost hosted two community outreach events on behalf of St. Mary’s Oncology department to share information about critical health matters, specifically focusing on prostate, testicular, colon and rectal cancer.

The events, hosted at the St. Mary’s Nutrition Center in Lewiston and the High Street Congregational Church Food Pantry in Auburn, reached over 250 community members combined. To help those who did not speak English, an interpreter tablet was provided by St. Mary’s Interpreter Services and allowed Alice and Rebecca to share information in Arabic, Somalian and Portuguese.

The power of collaborative community engagement in fostering health awareness and access was very visible at these events. St. Mary's Oncology remains committed to extending its reach and support within the community, working towards a healthier, more informed future!

If you are interested in having St. Mary’s host an informational session, please contact Ben Sullivan at bsullivan3@covh.org

What’s New at Southern Maine Health Care Pink on the Links Raises Over $17,000 for SMHC Breast Cancer Survivors The 27th Annual Pink on the Links Golf Tournament hosted by the Ladies of the Biddeford Saco Country Club raised $17,200 for SMHC’s Center for Breast Care! The Biddeford Saco Country Club Ladies chose SMHC for their donation in order to support local treatment for patients who want to stay close to home and still receive expert care. Over the past 11 years this group of incredible community members, chaired by Laura Blanchette, has raised $165,000 to support care for SMHC breast cancer patients.

Pictured L-R: Jillian K Smith, MD, MPH, Laura Blanchette, Kelly Moody, MA & Julie Davis, RN

What’s New at Western MaineHealth Lymphedema Services Expand at Stephens Memorial Michelle Cerminaro, PT, CLT-LANA, was recently certified in lymphedema management and is the second PT at Stephens to offer lymphedema care. This expansion will lead to increased access for patients in need.

Michelle completed her certification for Complete Decongestive Therapy (CDT) in October in Cleveland, OH. She finished the 90 hours of class time, and 45 hours of home study through the Norton School of Lymphatic Therapy. Furthermore, she passed an additional certification thru the Lymphology Association of North America (LANA). Congratulations Michelle!”

Michelle and her husband Tony, also a physical therapist, are graduates of Duquesne University in Pittsburgh, PA. They moved to the area in 2022.

2023 Turkey Trot 4 Hope Provides Resource Center Support November 23, Norway, Maine

We are happy to share that the 6th Annual Turkey Trot 4 Hope in downtown Norway raised $18,000 for the Cancer Resource Center of Western Maine. Thank you to all of the participants, sponsors and volunteers who helped make this event such a success!

Of the funds raised, 100% of the proceeds benefit the Cancer Resource Center of Western Maine, a 501c3 non-profit offering supportive resources free of charge to people in Western Maine affected by cancer.

Please visit here to see available programs and services, and our recorded classes are also available.

Resources & Quarterly Calendar

Chapter

7

Resources Guide Available

In collaboration with our navigation and social work teams, and our community partners, a resources guide is available. Our goal is to provide helpful local, regional, and national sources of information and support. Click HERE to access the guide.

Key Statistics for Cervical Cancer: The American Cancer Society's estimates for cervical cancer in the United States for 2023 are: 13,960 new cases of invasive cervical cancer will be diagnosed; 4,310 women will die from cervical cancer. Learn more about cervical cancer here: Cervical Cancer Overview | Guide To Cervical Cancer | American Cancer Society

The American Cancer Society National Cancer Information Center has trained Cancer Information Specialists available 24/7 to provide answers and support by phone at 1-800-227-2345, Live Chat or Video Chat.

Survivorship Videos - More people than ever are surviving cancer and thriving after treatment. Watch this video series to learn how to cope with the physical and emotional challenges that come during cancer treatment and beyond and find inspiration in the experiences of other survivors. Videos also available in Spanish.

Resource Support for Survivors and Caregivers

Personal Health Manager Personal Health Manager | American Cancer Society It can be hard to keep track of all the information that you get about your diagnosis and treatment. But keeping this information organized can help you feel less stressed and more prepared to talk with your doctor. The American Cancer Society Personal Health Manager can help. Your Personal Health Manager content can be printed and kept in a 3-ring binder to take along to your appointments. Using tabbed dividers to separate each section will make it easier for you to find what you need.

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Survivorship: During and After Treatment | American Cancer Society

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Cancer Caregiver Support | American Cancer Society

For more information on Colorectal Cancer, click below Colorectal Cancer Information | Understanding Colorectal Cancer | American Cancer Society

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.

Receiving a cancer diagnosis and undergoing treatment are just the beginning. The MHCCN supports life beyond cancer — providing physical, emotional, and practical support for the unique needs of the growing number of 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: Eliza Warren Giberson, Cancer Care Philanthropy Liaison by calling (207) 662-3829 or emailing Eliza.Giberson@mainehealth.org

TheNewEngland BreastCancer Alliance (NEBCA) is a 501(c)(3) Maine-based nonprofit founded in 2019by a group of young breast cancer survivors and their allies.

JOINUSFOROUR ANNUAL RUNWAY FORHOPEEVENT April 20, 2024 Holiday Inn By the Bay Portland, Maine

VISIT OUR WEBSITE TO BUY TICKETS!

OUR INAUGURAL 2023 EVENT WAS...

SOLD OUT!

Runway for Hope is our annual runway show featuring breast cancer survivors as models. In addition to being our biggest fundraiser, the event aims to empower and connect survivors, as well as highlight their strength, resilience, and courage.

VISIT OUR WEBSITE

EMAIL US

FOLLOW US

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Turning The Tide Ovarian Cancer Retreat The 2024 retreat will take place June 17th – 21st at Camp Medomak Retreat Center in Washington, Maine Who is the Retreat for?

The retreat is for women living in New England who are currently undergoing or who have completed treatment for ovarian cancer.

What are the facilities like?

Medomak Retreat Center in Washington, Maine is tucked within a cool pine forest and sits just above a pristine lake shoreline. Visitors stay in simple, New England style 2-person cabins which include a private bathroom, shower, electricity, comfortable twin beds, a writing desk and outdoor Adirondack chairs to enjoy the warm days. The main building hosts a large dining hall, four smaller breakout rooms, and a covered porch that can accommodate 20+ people. Other meeting places include a newly renovated, open-concept barn and other outdoor spaces. While at Medomak guests can enjoy hiking the on-property trails or exploring the quiet lake by canoe, kayak, or paddleboard. The cooling waters, located a 3-5 minute walk from the cabins, are a joy to swim in, paddle through, or simply observe from the docks with a good book.

What do participants do at the retreat?

The retreat combines recreation and relaxation through a variety of indoor and outdoor activities, art projects, entertainment, and free time. There are a variety of activities to choose from each day and may include light hiking, swimming, canoeing, kayaking, paddle-boarding, creative projects, yoga, massages, facials, dancing and singing. Participants are encouraged to take part in as many of these as they are up to—and everything at the retreat is optional. Participants are free to rest in their rooms or chat with new friends anytime. A licensed social worker is present and available for private and group discussions.

What food is provided?

All meals are included, and participants are encouraged to eat together in a family atmosphere.

Additional beverages and snacks are available throughout the day. All the food offered at the retreat is plentiful, nutritious, and diet-responsive to the extent possible, with an emphasis on organic and locally-sourced produce. Please note specific dietary needs on the application form.

Medical Needs Attendees must be able to care for their own medical needs while at the retreat. A nurse is available for minor first aid and supportive consultation if emergency assistance is required.

Please return the completed medical information form with your application.

For More Information Visit their website HERE

Calendar of Awareness & Events

January ……….................................................1-31 Cervical Cancer Awareness

February ….…….............................................1-29 National Cancer Prevention Month Gallbladder and Bile Duct Cancer Awareness World Cancer Day………………………………4 International Childhood Cancer Day…………15

March …………..…..…………………….1-31 Colorectal Cancer Awareness Kidney Cancer Awarenss Multiple Myeloma Awareness Triple-Negative Breast Cancer Day ………….3 International HPV Awareness Day …………..4 Daffodil Day………………………………..TBD

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Survivorship Digital Magazine Archives

Vol. 1, Edition 1 Jan-Mar, 2023

Vol. 1, Edition 2 Apr-June, 2023

Vol.1, Edition 3 July-Sept, 2023

Vol. 1, Edition 4 Oct- Dec, 2023

We would like to thank our donors and grant funders for their generous support of the MaineHealth Cancer Care Network and the patients and families we serve.