What are “Late Effects?”
Late (or “long-term”) effects are medical conditions that appear after the initial treatment for cancer. Unlike short-term side effects, which normally occur during treatment or immediately afterwards, late effects may not show up for months, years, sometimes decades after someone has completed their cancer therapy.
Not all cancer survivors will experience late effects. The cancer treatments of today are far more sophisticated than the ones that were used many years ago, making it less likely that today’s survivors will be exposed to the same risks that long-term survivors may face.
We do know that, for several reasons, long-term Hodgkin Lymphoma survivors have a greater chance of suffering from late effects. In general, this is due to the kinds of radiation and chemotherapy treatments that were commonly used to treat Hodgkin’s. They include cobalt radiation and chemotherapies that were made of “alkylating agents,” such as Carboplatin, Cisplatin, Carmustine, and Mechlorethamine (drugs found in the MOPP and TOPP and ABVD protocols).
But it’s not just the kind of treatments that were used in the past, it’s the amount of radiation and/or chemotherapy as well as the part of the body that treatment was directed to that puts Hodgkin’s survivors at risk. For example, Hodgkin’s often appears in the neck and chest area. Radiation aimed at that part of the body can severely damage the vital organs that are there, such as the heart, lungs, esophagus, thyroid, as well as the breasts. Radiation to the abdominal area may result in gastrointestinal issues and/or cancers of the GI tract, urinary problems, and infertility.
A Hodgkin’s survivor’s risk of having late effects may also depend on other factors, such as the age of diagnosis and treatment. Children and young adults have a higher chance of developing late effects than those that were treated as adults. This is, in part, because radiation and chemotherapy can be harmful to developing organs. Other individual risk factors include a survivor’s lifestyle and health habits as well as a family history of heart disease or diabetes.
Late or long-term effects may develop slowly and without notice, so it is very, very important that Hodgkin’s survivors and their caretakers understand what the signs and symptoms are for each one. We strongly encourage survivors to have a “Survivorship Care Plan.” This is a great way to be pro-active about your health care as a cancer survivor. A Survivorship Care Plan can be put into place from the moment you are diagnosed. It will give you and your medical providers a way to keep track of and anticipate any late effects that are likely to develop over time.
Hodgkin’s International offers our own Survivorship Care Plan on this website. It is available for you to download and use as part of your follow-up care. Note: While you may not have access to information about your past history and treatment, it will still be an extremely helpful document in helping you and your provider manage whatever late or long-term effects you might be facing.
These are some of the Late Effects that are most concerning for Hodgkin’s survivors:
Chronic Obstructive Pulmonary Disease (COPD)/ Lung Issues
Radiation Fibrosis (RF)
Compromised Immune System
On the following pages, we will describe each of these late effects in some detail.