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’s 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’s 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’s 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:
The American Cancer Society
The Leukemia and Lymphoma Society
The National Coalition For Cancer Survivorship
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.
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.
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’s 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:
Hodgkin’s International https://www.facebook.com/hodgkinsurvivors/
Living Life After Hodgkin’s Lymphoma https://www.facebook.com/groups/LLaHL/
Longterm Hodgkin’s Survivors https://www.facebook.com/groups/282165145293115/about/
Hodgkins Lymphoma/Disease Survival and Late Effects Late 1960’s- Early 2000’s https://www.facebook.com/groups/cameron933/
Hodgkin’s International will continue to update all of this information on a regular basis. We are also working to create a “Survivorship Plan” that is designed specifically for the needs of long- term Hodgkin’s survivors. It will be clear, concise, and applicable to survivors wherever they may be.
Let us know what we can do to help. And remember, you are NOT alone.
American Cancer Society, “Late and Long-term Side Effects of Treatment for Hodgkin Lymphoma”