Meet Sheilagh Foley, a Hodgkin's survivor with a familiar tale to tell, and she does it so beautifully. She perfectly describes the fear, the struggles and the frustration in being misunderstood by medical providers.
Sheilagh's story appeared n the Irish Times earlier this week. Hodgkin's International was mentioned as a resource, and we are thrilled to have the "shout out!"
This is a "must read" paper (by Raymond Chan, RN,PhD, Larissa Nekhlyudov, MD, MPH, Patricia Ganz, MD) for survivors and medical providers. It is EXACTLY what is needed in the world of cancer survivorship- a comprehensive template for insuring that survivors get the care that they need.
Download it, pass it on, place it in the hands of your doctors and caretakers. It's key.
Cardiovascular screening is critical for Hodgkin Lymphoma survivors. Anthracyclines and radiation put childhood cancer survivors at higher risk for heart failure and heart disease. Here is a recent article published in HemOnc Today discussing the reasons for cardiac follow-up surveillence.
Long-term survivors have been using the internet to understand their Late Effects for years. The value of self-advocacy is highlighted in this article, published in the American Society of Clinical Oncology Journal.
"Patients who have cancer have leveraged the Internet to gain a better understanding of their disease and connect across geographic boundaries with others facing the same challenges. Online cancer communities have developed into resources that highlight new research and evolving care pathways. Combined with increasing health literacy and social media, they have enabled some patients to become experts in their cancer. This combination of empowerment and expertise describes the new “e-patients.”"
Ryan Hamner is a four-time Hodgkin's survivor, musician, and author of "This is Remission: A Four-Time Cancer Survivor's Memories of Treatment, Struggle, and Life." (Available on Amazon). He is a regular contributor to Curetoday.com. As a musician, he wrote and recorded, "Where Hope Lives" for the American Cancer Society and "Survivors Survive" for the 2015 #WorldCancerDay. Like many of us, Ryan has experienced some of the Late Effects of his treatment, including cardiac problems. Read the full interview with Ryan in Coping With Cancer Magazine.
"As the War on Cancer Turns 50, Earlier Diagnoses and Treatments Are Saving Lives"- a recent article in AARP, by Sari Harrar
Hodgkin’s International is grateful for the Movement Condo Team and being chosen to be this year’s GraceWorks recipient.
Our hearts are full knowing that this gift will help drive our mission to connect survivors with one another and to provide them with essential information about the Late Effects they may face as a result of earlier treatments.
Martha's Vinyard Times reporter, Lucas Thors, interviewed Erin for the occasion.
Survivorship care is indeed more complex than simply a physical exam focused on the lymph nodes and a friendly catch-up on life.
In this issue of the Journal, de Vries and colleagues (1) examined the cause-specific late mortality among a multi-center Dutch cohort of Hodgkin lymphoma survivors. Although this study examines a population that has been extensively examined, and we know Hodgkin lymphoma carries a high risk of chronic health conditions, subsequent malignant neoplasms, and premature mortality, the breadth and details included in this analysis further inform care of Hodgkin lymphoma survivors and support the need for the development of novel approaches to treat patients with newly diagnosed Hodgkin lymphoma.
Recent article on “Cancer.net” describing some of the long-term effects of treatments for HL, including second cancers, fertility complications, thyroid problems, heart and lung damage, and emotional distress. These findings highlight the need for careful follow up for HL patients.
Treatments for Hodgkin Lymphoma can inflict a toll on the body that is
felt for decades to comeThis is a fascinating, timely article on the MANY costs of surviving cancer, and in particular for Hodgkin Lymphoma survivors. Eisenstein gives a comprehensive and all-too familiar view of the post-diagnosis life of those who thought their battle was over. The article includes an interview with Kevin Oeffinger, MD, formerly of Memorial Sloan-Kettering Cancer Center in NYC and now a family physician at Duke Cancer Institute in Durham, North Carolina, as well as with other researches in the field of cancer survivorship.
While we have previously posted this information on our website, it’s always worth repeating…
First of all, many of the late effects listed below may NOT apply to more recently diagnosed Hodgkin Lymphoma (HL) survivors. Treatment for Hodgkin Lymphoma has changed dramatically in the last forty years, and even in the last couple of decades. We now know that earlier forms of radiation and chemotherapy can have significant, sometimes deadly consequences for those who were diagnosed “way back when” (1960-1990’s, roughly). The good news is that those effects have been recognized, studied, and have informed the way HL is currently treated. More good news-
We now know what to be aware of and how important it is to remain vigilant, well after we are pronounced “cured”.
LONG-TERM SURVIVORS OF HL CAN SUFFER THE FOLLOWING LATE EFFECTS:
Secondary Cancers such as Breast Cancer, Lung Cancer, Leukemia, Non-Hodgkin Lymphoma, Thyroid Cancer, Esophageal Cancer, Skin Cancer, and others
Radiation Fibrosis– where normally healthy tissue becomes “sclerotic,” or hard and stiff
Compromised immune system
These are just a few of the possible late effects of earlier treatment. Older forms of radiation, such as cobalt radiation, may have particularly toxic repercussions. Think of the part of your body that received radiation, such as your chest, neck, abdomen, pelvis, etc, as being “in the line of fire”. Yes, the treatment may have cured the cancer, but it may have also left a path of destruction in its wake. Vital organs, like the heart and lungs, could be significantly compromised. Women who received radiation to the chest could be at risk for breast cancer.
Many long-survivors of HL feel well for years after they end treatment. Some seem to have by-passed late effects all together. Others have been bombarded by so many health issues that they’ve literally lost count. While it is clear that more research needs to be done in this area, there is also an abundance of evidence that long-term survivors of Hodgkin Lymphoma are at risk. We owe it to ourselves to be aware, to be informed, and to be pro-active about our health.
WHAT CAN YOU DO?
Hodgkin’s International has included several articles about late effects on this website, including the article below, as well as a video on “Radiation Fibrosis Syndrome”. We’ve added blogs and stories from long-term survivors. There are several institutions and support groups who have published extensively on the subject of late effects in HL survivors. They include:
Create a “Survivorship Plan”There are several examples of these and they can be found on all of the above sites. Some are more detailed than others. All include a medical history for each survivor- the more detailed the better. For those of us who were treated decades ago, this might be difficult, as earlier medical records may not be readily available. Find out as much as you can. Don’t wait until you become symptomatic. Discuss your Survivorship Plan with your General Practitioner, Oncologist, and other sub-specialists and make sure that it’s included in your medical record.
1. Explore Survivorship Clinics in your area
Find out where they are and whether or not you are an “eligible” client. Some clinics are only for adult survivors of childhood cancers, some request that you were previously treated there, etc. Explore whether or not your insurance plan covers a yearly visit to a Survivorship Clinic.
2. Get the support you need….
In addition to all the cancer institutions, research centers and non-profits, there are several support groups especially geared toward long-term Hodgkin Lymphoma survivors. The American Cancer Society and the Leukemia and Lymphoma Society both have support networks. ACOR, or the “Association Of Cancer Online Resources” has an extensive support group for HL survivors. There are threads on that site for “Long Term Survivors”. Facebook also has more than a few sites devoted to HL survivors, including some that are exclusive to long-term survivors. They include:
Let us know what we can do to help. And remember, you are NOT alone.
Recent article in “American Cancer Society” describing some of the long-term effects of earlier treatments for Hodgkin Lymphoma (HL), including second cancers, fertility complications, infections, thyroid problems, heart disease, stroke, and lung damage. These findings highlight the need for careful follow up for HL patients
Cancer Survivorship: A Need for International Collaboration - Dr. Vittorio Mattioli, MD, Susan Leigh, RN, BSN
“Cancer Survivorship: A Need for International Collaboration,” Editorial by Dr. Vittorio Mattioli, Interview with Susan Leigh, RN, BSN
This article in “Science Daily” describes some of the long-term effects of earlier treatments for Hodgkin Lymphoma, including lung cancer, breast cancer, leukemia, bowel cancers and some skin cancers. These findings highlight the need for careful follow up for Hodgkin Lymphoma patients.
Many long-term survivors of Hodgkin Lymphoma suffer from Radiation Fibrosis Syndrome, or RFS. Essentially, this is when tissue becomes “sclerotic,” or abnormally hard and stiff, and it can affect vital organs, including the heart and lungs. RFS is thought to be caused by radiation therapy, particularly the kind of radiation that was used decades ago. Dr. Michael Stubblefield of Memorial Sloan-Kettering Cancer Center has studied RFS extensively. We’ve included his YouTube video presentation at the hospital from October, 2011,
We encourage Hodgkin Lymphoma survivors to discuss their risk for RFS with their physician.