In our Snapshots blog series, we turn to Maine Cancer Foundation constituents - from staff, board members and other volunteers, donors, grant recipients and beyond - to share important moments in their lives related to cancer. Our series will paint a broad stroke of the cancer landscape in the state, while narrowing the focus into the rare and intimate moments that bring us all together.
Snapshots #6 is the story of Jon Henry, who was diagnosed with prostate cancer at just 44 years old. His treatment caused life-altering side effects, but even in the midst of challenges, Jon found camaraderie and healing.
Paul Han, MD, MA, MPH, is the Director of the Center for Outcomes Research and Evaluation at Maine Medical Center Research Institute. In June 2016, Maine Cancer Foundation awarded Maine Medical Center a $400,000 grant over four years for The Maine Lung Cancer Prevention and Screening (Maine LungCAPS) Initiative. Maine LungCAPS is a multi-institution, multi-disciplinary collaboration of Maine health care providers and stakeholders. Dr. Han serves as Principal Investigator for the initiative, designed to improve the prevention, early detection and treatment of lung cancer in Maine
The month of September is dedicated to men’s health and prostate cancer. In our guest blog series, Dr. Han shares his opinions about the prostate-specific antigen (PSA) test, a blood test used to screen for prostate cancer.
Prostate cancer is the most common cancer and the third leading cause of cancer deaths among US men. The prostate-specific antigen (PSA) test is a blood test used to “screen” for prostate cancer—that is, to detect cancer at an early stage, when it can be effectively treated. PSA testing is currently the only available screening test for prostate cancer, and for many years it has been widely used.
PSA screening has also been controversial. It’s not a perfect test because it misses some cancers (leading to false reassurance), and can also produce false-positive results (“false alarms”), which can lead to unnecessary anxiety and prostate biopsy procedures. And although prostate cancer can be aggressive and lethal, many of the cancers detected by the PSA test will never grow, spread, or cause additional problems.
Maine is the most rural state in the nation, which bodes well for scenic landscapes, but proves difficult for residents traveling long distances for cancer care. Connie Garber, former Transportation Director for York County Community Action Corporation (YCCAC), frames the issue to explain the necessity for transportation assistance. “Recall a time when your car was unavailable to you for a day,” she said. “What does this do to your normal course of action over the day? How disrupted was your personal mobility?” This day-in-the-life scenario is easy to conjure for even the most affluent Mainer, and the upset to routine is undeniable.
For thousands of Mainers, lack of transportation is an overwhelming burden. Individual travel needs can be as varied as cancer itself; one person might require short-term assistance to and from radiation treatment (typically lasting just six weeks) because friends or family are unavailable. Another patient might have a disability which requires a specialized vehicle. “There’s no one approach to transportation,” said Garber. “We take it for granted so easily, but there are many permutations to what transportation needs are for people."
Maine Cancer Foundation is currently funding several cancer patient transportation grants, including one at Lake Region Senior Service, Inc. Executive Director Dana Hanson believes in community-based transportation programs, which he says most effectively address gaps in Maine’s services. Mr. Hanson also notes that Maine has a significant senior population; their needs, including transportation, will only continue to grow in the years ahead.
Since 2012, Maine Cancer Foundation has given over $50,000 in transportation grants to DSCF to support cancer patients in Midcoast Maine who travel to and from treatment.
Your generous support helps ease the burden of transportation costs for cancer patients in our state. Thank you!
Challenge Cancer 2020 is our visionary initiative to cut cancer rates in Maine by 2020. Our goal for a Maine less burdened by cancer requires active participation from people and communities across the state. Our success depends on inviting key stakeholders to the table to share strategy, tactics, and experience.
We recently sat down with one of our stakeholders: Sharon Snell, President of Dean Snell Cancer Foundation (DSCF). Since 2012, DSCF has received consecutive Maine Cancer Foundation grants totaling $52,500 to support transportation for Midcoast Maine cancer patients seeking treatment.
“It was like a tsunami,” said Sharon Snell, President of Dean Snell Cancer Foundation. A resurgence of esophageal cancer in her husband Dean upended the family’s hope for recovery. He was diagnosed in June 2008, and by fall 2009, lost his life to the disease.
The morning after Dean’s passing, a condolence call from an oncologist at New England Cancer Specialists (where Dean received treatment), planted the seed for a way to honor his memory. “I said to [the oncologist], ‘I’d like to start a memorial fund in Dean’s memory.’” The idea ricocheted through Dean and Sharon’s family, including their six adult children, and landed with a resounding yes. The family decided to start an independent foundation and the Dean Snell Cancer Foundation (DSCF) was born fast enough to be included in Dean’s obituary. Days after his passing, $4,000 was raised in memorial donations alone.
Since 2009, DSCF has raised over $400,000 for New England Cancer Specialists [NECS] patients. “NECS [supports] cancer patients up and down the Midcoast area. We’ve helped people from Vinalhaven to Sabattus,” Sharon noted. The organization is entirely volunteer-run, and the funds raised go directly to individual patient needs.”There are as many situations as there are patients,” said Sharon. “Early on we decided we didn’t want anyone to fill out an application or intake form. There are no restrictions and no formulas. We only provide help where needed.”
Did you know that over half of the oncologists in Maine are in Cumberland County?
As one of the most rural states in the country, many cancer patients live far away from treatment providers, and access to care may become a significant barrier to recovery.
For over a decade, Maine Cancer Foundation has provided funding for transportation programs that offer assistance to cancer patients statewide. But we believe there is more we can do.
Here are the big questions we've been asking:
Thank you to Koch Aerial Imaging for the beautiful footage!
Maine Cancer Foundation Board Member Laura Davis Rinck spends her day job as President of Rinck Advertising. In addition to serving on the Foundation’s Board of Directors, Laura has been a voice for those affected by cancer and has shown how to live with hope and success. She won the 2011 Amgen Breakaway from Cancer Survivor award for her involvement in community outreach and for demonstrating a passion for helping others with cancer. The national award is given to a cancer survivor who is involved in community outreach and demonstrates a passion for helping others with cancer.
The month of July is dedicated to cancer survivorship. In our guest blog series, Laura, who was first diagnosed with Hodgkins Lymphoma in 1989, shares unique and impactful perspectives on 28 years of survivorship. Most recently, her journey included over six months of trying to gain access to medical records she was told had been destroyed.
According the National Cancer Institute’s Office of Cancer Survivorship, there are approximately 15.5 million survivors in the United States. Just 17% or 2.6 million have survived over twenty years. And the number drops to about 6% or 960,000 survivors who have lived for thirty years.
I am a twenty-eight year survivor.
The data from NCI supports my own internal clock which, lately, has felt like a bit of ticking time bomb. I suspect that ticking is probably heard by most people who are fifty-something but I only hear it as a survivor. In fact, I have now lived longer as a survivor than not. The advantage of long-term survivorship is a kind of health vigilance that you gain when you’ve been introduced to your own mortality in your early 20’s. Sometimes that clock ticks louder than other times.
A cancer survivor is anyone diagnosed with any type of cancer from the time of their first diagnosis through the balance of the rest of their life, whether that is a few precious months or several decades. My survivorship journey has been defined as living cancer-free for most of that 28-year period, with intermittent secondary cancers including thyroid cancer and multiple basal cell carcinomas. I’ve also had health issues related to radiation scars like pulmonary fibrosis, colon strictures and angiomyolipomas which are benign tumors of the kidneys. There have been plenty of suppressed immune issues over the years including pneumonia and a case of meningitis.
My story is quite typical of a long-term Hodgkin lymphoma survivor. Many of my long-term effects have been the result of receiving a lifetime quota of 4800 rads of radiation treatment. While I have had my ups and downs, in 2011, I took a much more active role in the management of my survivorship when I stumbled upon a medical article that had been published in the American Journal of Medicine entitled, “Care of the Adult Hodgkin Lymphoma Survivor”. I distinctly remember feeling alarmed after reading the abstract: “Hodgkin lymphoma survivors are at risk of developing secondary malignancies, cardiovascular disease, pulmonary disease, thyroid disease, infertility, premature menopause, chronic fatigue, and psychosocial issues. These conditions usually have a long latency and therefore present years or decades after Hodgkin lymphoma treatment, when the patient’s care is being managed by a primary care provider.” (Read the article in full).