Living With Hodgkin Lymphoma: Coping and Support

Coping With Hodgkin Disease, From Diagnosis to Survivorship

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Coping with a diagnosis of Hodgkin lymphoma, no matter which type, encompasses nearly every aspect of your life for the rest of your life. First, there is the shock of diagnosis, followed by the emotions of living with a scary disease. Then there are the side effects of treatments such as chemotherapy and radiation, as well as symptoms of the disease itself. And when treatment is finished, you enter a newly recognized yet extremely important stage.

The stage called survivorship.

The old adage that “it takes a village” was never more appropriate than when describing a diagnosis of cancer. Let's talk about coping and finding support during your journey with Hodgkin lymphoma from diagnosis through survivorship.

The Shock of Diagnosis

Nothing can ever prepare you for the words: “You have cancer.” No matter what you may have thought in the past, it's an entirely different story once you hear those words yourself. You may even chuckle a bit as you realize how much different you feel than how you may have imagined you would feel. Nobody who hasn't faced cancer can truly understand.

Coaches often have great advice for those facing cancer, at least coaches for endurance sports. That’s because facing cancer of any type is like running a marathon. Certainly there are a few sprints mixed in, but for the most part, it is an endurance challenge. Hence, the advice given to marathoners comes to mind:

  • Don’t rush out at the beginning. Take a moment to get used to the road.
  • Pace yourself.
  • Drink plenty of fluids and take the time to rest.
  • Make sure to cool down when you’re done.

When you are diagnosed, the best first step (most of the time) is to just take a moment to catch your breath.

The Shock of Changed Relationships After a Cancer Diagnosis

As you begin this journey, you'll also notice that those who run alongside you will change.

Some runners—even those you thought closest—will not be up to running the race with you. Others—some who you'd only seen in passing and some you never knew—will slip in beside you, cheering you on and holding you up when you're feeling weak. Relationships change, and someday you will appreciate the changes, even those that are painful now. For now, simply knowing that relationships change after a diagnosis may help you better accept what is happening.

Learning About Your Disease

Medicine has changed drastically (in a positive way) over the past few decades, and now people with cancer and their physicians are working side by side to figure out treatment plans. With the advances in cancer therapy, there are now many choices. While this is wonderful, it can be difficult to know exactly what course of action is right for you.

Learn as much as you can about your disease so you can be an active member of your cancer care team. Learn how to research your cancer online and how to find the latest treatment information. Becoming part of a cancer community (see below) offers yet another way to stay on top of the latest research surrounding Hodgkin disease.

Ask a lot of questions, and if you aren't comfortable with an answer, ask again.

Many people like to bring a friend with them to their oncology visits. This friend can help by taking notes or asking any questions you are afraid or hesitant to ask. Most importantly, learn how to be your own advocate in your cancer care. Not only does being your own advocate reduce some of the fear that comes with facing cancer, but in some circumstances, it may even affect your outcome.

Fertility Before and After Hodgkin Lymphoma Treatment

If you are in a relationship, or even if not, it's important to talk about fertility at the onset of treatment. Hodgkin disease often hits at an age in which these questions are very important and central to your life.

Not only may some treatments raise the risk of birth defects if you should become pregnant during treatment, but chemotherapy and radiation therapy often lead to permanent infertility.

While many cancer treatments can lead to infertility, keep in mind that—especially early in your treatment—you could become pregnant. Not only may some treatments damage a developing fetus, but becoming pregnant may put you in a position in which you have to make decisions you'd rather not make. Talk to your oncologist.

If you may wish to become pregnant in the future, planning ahead for your fertility after cancer treatment is strongly recommended. There are a number of ways to "preserve your fertility" despite the effects of therapies. For men, freezing sperm is a relatively easy option. While freezing eggs is still at the investigational stage, freezing embryos provides an option for women who would like to have a biological child in the future. Talking to a specialist before you begin treatment, such as a perinatologist who specializes in caring for women who have had cancer, may help you better understand your options and alleviate some of your anxiety and fears.

Learn more about Hodgkin lymphoma's effect on fertility and pregnancy and the options for preserving your fertility after cancer treatment. Keep in mind that there are additional options such as using a surrogate, or adoption if having to address fertility isn't something you are prepared to do at this time.

Coping With Emotions

It’s hard to describe the emotions that accompany a diagnosis of Hodgkin lymphoma, since the entire spectrum may apply. You may go from sadness to anger to acceptance to joy and back repeatedly, often in a matter of only a few minutes or hours.

And while you are riding this roller coaster, your loved ones are facing their own crazy emotions. In fact, many loved ones suffer through the same emotional roller coaster with the added stress of feeling helpless.

We don’t have a lot of advice to share on how to deal with these emotions. Instead, it’s important to know that these often disparate feelings are normal. Feelings and emotions are not bad in themselves, unless, of course, you act on those feelings. As you cope with your swinging emotions, the best words of advice are probably what you would suggest when offering advice to someone else:

  • Be good to yourself.
  • Forgive yourself.
  • Pamper yourself.
  • Allow yourself to feel your feelings and express your emotions.
  • Find someone you can be weak with, a person with who you can share your darkest thoughts.

If you've been living with Hodgkin lymphoma for more than a day or two, you've probably already heard the advice that "you need to be positive to survive cancer!" While it's helpful to keep a positive attitude with cancer most of the time, it's equally important to express your negative emotions, whether that means talking about your fears, your frustrations, or your anger at having to face this dreaded disease. Life isn't fair, and you have a right to say so!

Coping With Chemotherapy

Just hearing the word "chemotherapy" may conjure up awful thoughts of nausea and hair loss. Yet, while hair loss remains common, the management of other symptoms, such as chemotherapy-induced nausea, has come very far. Many people now have little or no nausea from even the most nauseating of medicines due to the development of drugs to prevent this feared symptom.

Hair loss can be distressing, and though there are now options for preventing hair loss from chemotherapy, such as ice caps, these are not always advised, especially with blood-related cancers such as Hodgkin lymphoma. Instead, reframing can be helpful. With reframing, a situation does not change, but your way of looking at it does. In addition to finding some way to make choosing a wig or other hair covers enjoyable, think of the advantages of not having hair. You may need to "fake it 'til you make it" in this case, but looking for the small positives, such as not needing to shave your legs or face, may help you find ways to reframe some of the other challenges associated with cancer as well.

Bone marrow suppression from chemotherapy is usually the most dangerous side effect of chemotherapy. Anemia from a low red blood cell count can cause fatigue. Thrombocytopenia from a low platelet count can cause bruising. And a low white blood cell count can increase your risk of infection. You may wish to check out these thoughts on lowering your risk of infection during chemotherapy.

Coping With Radiation Therapy

Radiation therapy is used less often for Hodgkin disease than in the past, but is still used, especially for early stage disease. It's important to note that the radiation used for Hodgkin lymphoma today is much different than the past. Radiation is now delivered to the tumor alone (mantle field radiation) to preserve healthy tissue, and in lower doses than in the past. For this reason, when you hear that your neighbor's third cousin's ex-husband had problems due to radiation therapy for Hodgkin lymphoma 20 years ago (and you will hear these stories), you can politely let your neighbor know that things have changed.

The type of side effects of radiation therapy that you may experience depend on the region of your body that is treated. Redness (radiation dermatitis) is the most common side effect, and usually heals rapidly after radiation is done (though you may have some permanent skin color changes which look like  a suntan). Your radiation oncologist may give you a cream to use for this. If not, make sure to ask what you should use.

With radiation to the chest, inflammation of the lungs, radiation pneumonitis, is fairly common. Thankfully, this side effect is relatively easy to treat. Make sure you let your doctor know if you notice a cough or shortness of breath, as untreated radiation pneumonitis can lead to permanent radiation fibrosis without treatment. Radiation to the abdomen may cause nausea, and usually results in permanent infertility as well.

Coping With Fatigue, Itching, and More During Treatment

No matter what stage your disease, and no matter what treatments you will have, cancer fatigue is likely to visit your life. Nearly everyone who faces cancer deals with fatigue, and it is often considered one of the most annoying symptoms of cancer treatment. Cancer fatigue, unlike ordinary tiredness, doesn't usually respond to a good night of sleep or a strong cup of coffee. Nor does it go away very soon when you finish treatment.

Unlike nausea, we don't have any easy solutions to the fatigue that goes with Hodgkin lymphoma treatment. Instead, finding ways to live your life within the constraints of fatigue is the best option. Check out these other tips for coping with cancer fatigue day to day.

Roughly 10 to 25 percent of people with Hodgkin lymphoma develop a persistent and very annoying itch. Check out these tips on coping with the "Hodgkin itch."

It's important to talk to your doctor about symptoms such as fatigue and loss of appetite that, while not life-threatening compared to some other symptoms, can seriously reduce your quality of life. In addition, anxiety and depression are both very common in people with cancer and should be addressed. Many cancer centers now have oncology psychiatrists or other mental health professionals who can help people cope with the issues specific to those coping with cancer.

Often times, however, these "nuisance only" symptoms are put on the back burner, and that is unfortunate. It's our hope that everyone would be able to feel as good as possible throughout their cancer journey rather than wait for the end of treatment to feel well. You may be interested in learning about some of the integrative treatments for cancer that are now available at many cancer centers.

While these treatments have not been shown to help treat cancer by themselves (and shouldn't be used in that fashion), several have been shown to help people cope with the symptoms of cancer and cancer treatments. Options at many centers now include massage therapy, meditation, acupuncture, art therapy, and much more.

While integrative (complementary/alternative therapies) may help with some of the symptoms you will experience, it's important that you talk to your oncologist about any dietary supplements or herbal preparations you are considering. Some vitamin supplements may interfere with the effectiveness of cancer treatments.

Caring for Yourself During Treatment

While most of your oncology visits will include discussions about medications used to treat your cancer and side effects such as low blood counts, "normal" healthy practices such as eating well and exercising are no less important.

Eating a balanced diet with a wide variety of foods is most important, and many oncologists now consider a healthy diet an integral part of cancer treatment. Sometimes chemotherapy symptoms such as nausea, taste changes (metal mouth), or mouth sores can interfere with eating. Ask your oncologist to set you up with a nutritionist if this is the case for you. A cancer nutritionist will have many suggestions to help you overcome the most difficult eating-related problems.

Physical activity, as with most health conditions, is very important as well. If you are coping with cancer fatigue, you're probably not ready to run a marathon, but even small amounts of exercise have been shown to be beneficial. Shorter amounts of exercise on a regular basis are more beneficial than longer periods of exercise done less often. Our advice is to choose physical activities that you enjoy the most. Not only do you deserve activities which are fun, but you're more likely to stick with an exercise if you find it enjoyable.

Getting adequate rest is extremely important, though many people cope with cancer-related insomnia. Talk to your doctor about treatments for sleep problems related to cancer, as some studies have found that sleep problems can have a negative impact on outcomes of treatment.

Finding Support

Many people with cancer have family and friends who want to help, but actually asking for and receiving that help can be a different story.

You’ve probably heard people tell you to ask for help, and that is great advice. Yet, there are many reasons those with cancer are reluctant to do this. Have you given yourself any of the following excuses?

  • You don’t want to be a burden.
  • Your family and friends are already too busy with their own lives.
  • You don’t want to feel indebted.
  • You don’t want to give up the control that comes with being able to handle everything yourself.

Even if you are usually the "strong one," making an effort to ask for, and allow people to help you, is important at this time.

In addition to asking for help, you then need to learn to receive help. Many people find it hard to receive help unless they feel they can “give back” in some way. Unfortunately, many cancer organizations talk about “giving back” which only reinforces this feeling. You don’t need to give back. One wise individual said that “the best way to thank someone for a gift is to receive it fully.” At this time you need to focus on healing yourself. There will be time, later on, to "give back" if that's what you wish to do.

Support Groups and the Hodgkin Lymphoma Support Community

Even if you have the most loving group of family and friends on the planet, there is something special about being able to talk to someone who is facing a similar challenge. This is the basis of many groups in our society and why a cancer support group can be so invaluable.

You may have a local cancer support group in your community. In general, you don't need to find a support group specifically for people with Hodgkin disease, but you do want to find a group of people who share some of the same concerns. For example, you may want to find a cancer support group of people who are facing either early stage or, instead, more advanced stages of cancer depending on the stage of your own cancer.

Choosing a support group is like choosing a family, and many people find that those in their support group become lifelong friends. Find a group which you find encouraging and uplifting, but one that also faces the tough issues at a deeper level. Don't worry if you happen to be an introvert. Our experience is that it won't matter once you find a group of people much like you.

Online Hodgkin lymphoma support communities can also be an excellent resource. These communities give you the opportunity to talk with others facing the same disease (or subtype or stage). Many of these groups talk about the latest advances in treatment and clinical trials that are available as well, so in addition to emotional support, these groups can be very informative.

Take a moment to learn about cancer patients, social media, and protecting your privacy. The internet can be amazing resource and source of support, but it's worth taking a moment to think about privacy issues before pressing send.

Survivorship

When compared to the after-care for people who have had a heart attack or even a knee replacement, we have done little in the past for those who have reached the end of cancer treatment. If you have reached this stage of your journey, you might be wondering, “what now?” Many Hodgkin lymphoma survivors feel apprehensive at this stage. Some people remark that it was like being told, "you're done with treatment, now have a good life," without having any idea how to take the next steps in living.

Survivorship is changing. Many oncologists now create a cancer survivor care plan for those done with treatment, which outlines the type of follow-up which will be needed, as well as addressing any late effects of cancer treatment.

We're learning that the majority of people who complete treatment for Hodgkin lymphoma have some of these late effects, whether they are late effects of the disease itself, long term side effects of chemotherapy or long-term side effects of radiation therapy. While this may sound discouraging, many cancer treatment centers now have programs in cancer rehabilitation (such as the STAR program) which address these issues, helping people to truly have a positive "new normal' when treatment is done. Whether you are coping with chronic pain, lasting fatigue, or relationship issues, there is help available.

You may be feeling anxious if you've heard or read information about later problems in people who have survived Hodgkin lymphoma. Conditions such as secondary cancers or even heart disease related to cancer treatments occur at times. Part of the purpose of your cancer survivor plan is so that your oncologist can help you understand any risks you may have based on the specific treatments you had. She may recommend that you go through additional screening (such as early breast cancer screening if you have had chest radiation) or at least help you understand any symptoms which should raise a red flag and prompt you to seek medical care.

The Positive Side of Survivorship and Silver Linings

When we talk about cancer, much of our talk focuses on improving survival rates and coping with side effects. Yet recent research has found that there are some surprising positive side effects associated with cancer treatment. Not only do cancer survivors appear to have more compassion than average, and appear to appreciate life to a greater degree, but there are some more subtle but positive changes in how people think after going through cancer treatment. Take a moment to learn about how cancer changes people in good ways and then reflect on the silver linings related to cancer in your own life.

Sources:

Bryant A., Smith, S., Zimmer, C. et al. An Exploratory Path Model of the Relationships Between Positive and Negative Adaptation to Cancer on Quality of Life Among Non-Hodgkin Lymphoma SurvivorsJournal of Psychosocial Oncology. 2015. 33(3):310-31.

Chircop, D., and J. Scerri. Coping with Non-Hodgkin Lymphoma: A Qualitative Study of Patient Perceptions and Supportive Care Needs Whilst Undergoing ChemotherapySupportive Care in Cancer. 2017 Feb 23. (Epub ahead of print).

Daniels, L., Oerlemans, S., Krol, A., Creutzberg, C., and L. Van de Poll-Franse. Chronic Fatigue in Hodgkin Lymphoma Survivors and Associations with Anxiety, Depression and ComorbidityBritish Journal of Cancer. 2014. 110(4):868-74.

Keegan, T., DeRouen, M., Parsons, H. et al. Impact of Treatment and Insurance on Socioeconomic Disparities in Survival after Adolescent and Young Adult Hodgkin Lymphoma: A Population-Based StudyCancer Epidemiology Biomarkers and Prevention. 2016. 25(2):264-73.

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