A Guide to Cancer Survivorship Care Plans for Hodgkin Lymphoma Patients
Expert insights from Dr. Matthew Matasar
Survivorship care plays a vital role in your cancer journey, helping you feel less alone and more prepared to receive the necessary support and guidance through Hodgkin lymphoma and beyond.
To offer a real-life understanding of cancer survivorship care plans, we talked to Dr. Matthew Matasar, the chief of blood disorders at the Rutgers Cancer Institute of New Jersey and RWJBarnabas Health. He emphasizes the significance of survivorship care and offers practical advice.
This article will explore Dr. Matasar’s expert insights and provide a comprehensive guide to cancer survivorship care plans for Hodgkin lymphoma patients.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Understanding Cancer Survivorship Care Plans
“Everybody who’s gone through Hodgkin lymphoma deserves to receive compassionate, thoughtful, wise survivorship care as they survive and live with their history of Hodgkin lymphoma,” says Dr. Matasar.
To facilitate effective survivorship care, it can help to have a cancer care plan template, often referred to as a survivorship care plan. This straightforward document outlines your diagnosis, treatment details (including medications, doses, and radiation therapy), as well as recommendations from your oncologist and their team for your ongoing care.
“When someone is in charge of saving your life, you want them to actually care about your life and find it interesting and important.”
Kelsey R. | Kelsey’s Stage 2A Hodgkin’s Lymphoma Story
Dr. Matasar reassures patients by stating, “That simple document can then go with you, which you can then share with your other doctors, your primary care providers, your other providers so everybody’s on the same page. Everyone understands what you went through and what everybody should be attentive to protecting your health going forward.”
Creating Your Personalized Survivorship Care Plan
If you’re not sure where to start on your cancer survivorship care plan, visit Penn Medicine’s Oncolife. The program offers a quick questionnaire to help you outline your plan which you can later personalize with your healthcare team.
What Should Your Cancer Survivorship Care Plan Include?
1. Diagnosis and Treatment History: Your care plan should clearly document your Hodgkin lymphoma diagnosis, stage, and subtype, including any specific details or variations that may be relevant to your ongoing care.
2. Treatment Summary: Provide a detailed summary of the specific treatments you have received, including the medications administered, radiation therapy, and the number of cycles or rounds completed.
3. Side Effects and Potential Long-Term Effects: Address any potential side effects or long-term effects associated with your treatments. This may include details about potential risks and suggested steps for regular check-ups to detect any issues early on and ensure proper management to stay proactive about your health.
4. Recommendations for Ongoing Care: Outline the recommendations from your oncologist and their team regarding your future care. This may include details about follow-up visits, screenings, lifestyle modifications, diet changes, and other proactive steps to safeguard your health.
5. Supportive Care Services: Include information about supportive care services that can assist you in addressing your physical, emotional, and psychosocial needs. This may involve counseling, rehabilitation, survivorship programs, and other resources that can support your overall well-being.
For more detailed information, visit: American Cancer Society – Survivorship Care Plans.
The Role of Survivorship Clinics
Dr. Mattazar mentions that cancer survivorship clinics, often found within cancer centers, can provide specialized care for individuals.
He emphasizes their unique value stating, “Patients who are survivors at the highest risk for complications from treatment can be followed in a more multi-disciplinary, thoughtful, data-driven way so that we can really do the very best job at protecting our survivors.”
Additionally, cancer survivorship clinics often take a “whole person” approach to health and treatment. They can help you navigate the healthcare system, address your diet and exercise regime, and refer you to other services.
Expert Advice on Self-Advocacy
Preparing for your Hodgkin’s journey with cancer survivorship care can help quickly communicate your health status but Dr. Matasar also emphasizes the value of self-advocacy.
“Don’t be afraid to ask questions,” he says. “So often I have patients come in and they are overwhelmed — and of course. There’s so much relief to hear a plan, to hear good news that there [are] treatment options, and that cure is attainable that there’s a reluctance to want to rock the boat, to advocate for yourself, to ask questions, and to learn more.”
“It could be a spouse, relative, primary doctor or an organization that can advocate for you when the process becomes stressful. This trusted companion ensures that you are able to ask the questions we may easily ignore or miss because we are processing our own emotions.”
Erica H. | Erica’s Stage 3B Classical Hodgkin’s Lymphoma Story
For patients unsure where to start with the overwhelming number of questions that may be circling their minds, Dr. Matasar offers a few to get started.
“What I tell my patients is that this is not my journey, he says. “This is your journey. You’re the one climbing the mountain. I’m the Sherpa. I’ll drag your bags alongside you. But this is your journey and I need you to be as prepared and ready, as informed and engaged as possible so that we can do this together.
“Just check with yourself. When you do not feel anything, or if you feel like everything — everything is valid. Even the smallest thing that might be off, tell your doctor so they can know. It might be significant later on.”
Delishea H. | Delishea’s Stage 4B Classical Hodgkin’s Lymphoma Story
Dr. Matasar’s Questions to Ask Your Doctor
Here’s a summary of the questions Dr. Matasar suggested to get a conversation going with your doctor.
- How can I actively contribute to improving my outcomes during and after treatment?
- What measures can I take to ensure my safety and well-being throughout the treatment process?
- What are the recommendations regarding exercise during my treatment?
- How can I modify my diet to support my health and recovery?
- What should I know about sexual activity while undergoing treatment?
- How might the treatment affect various aspects of my life, such as daily activities, relationships, and emotional well-being?
- Are there any considerations or guidelines I should follow regarding work or employment during this time?
- How do I approach disclosing my diagnosis and treatment to someone I’m dating or considering a relationship with?
Remember, it’s important to consult with your healthcare team, to get personalized answers and guidance based on your specific situation and needs.
Explore Hodgkin Lymphoma Patient Stories
Madi J., Hodgkin's, Stage 1B
Cancer details: Most common and most treatable form of Hodgkin lymphoma
1st Symptoms: Shortness of breath
Treatment: 3 rounds (6 infusions) of ABVD chemo
Danielle D., Hodgkin's, Stage 2
Cancer details: Diagnosed at age 25
1st Symptoms: Swollen lump on right side of neck/chest area, continued to grow
Treatment: ABVD chemotherapy (3 cycles = 6 infusions)
Lani S., Hodgkin's, Stage 2
Cancer details: Tumor pressing on heart
1st Symptoms: Appendicitis led to CT scan that found tumor
Treatment: ABVD chemotherapy, 7 cycles
Jason F., Hodgkin's, Stage 2A
Cancer details: Diagnosed at 39
1st Symptoms: Itchy legs, bloated face and “upper trunk,” slow-healing wounds, asthma worsened
Treatment: 6 cycles (12 infusion) ABVD chemo, 18 radiation therapy sessions
Logan A., Hodgkin's, Stage 2A
Cancer details: Diagnosed at age 15
1st Symptoms: Lump in neck & fatigue
Treatment: 4 cycles of ABVE-PC chemo
Helicon K., Hodgkin's, Stage 2A
Cancer details: Found lymphoma cells in adenoid tissue
1st Symptoms: Difficulty breathing with blockage in nose, surgery to remove tissue resulted in discovery of Hodgkin lymphoma cells
Treatment: ABVD chemotherapy (4 cycles), radiation (20 sessions)
Lauren C., Hodgkin's, Stage 2A
Cancer details: Diagnosed at 23 years old with nodular sclerosis, relapsed after 6 months of 1st-line treatment
1st Symptoms: Itchy body, enlarged lymph node over collar bone
Treatment: ABVD chemotherapy and ICE, radiation, and stem cell transplant for relapse
Wade W., Hodgkin's, Stage 2A
Cancer details: Diagnosed at 18 years old
1st Symptoms: Enlarged lymph nodes (around neck), diagnosed at 18 years old
Treatment: ABVD chemotherapy (2 cycles), AVD chemotherapy (4 cycles)
Moe C., Hodgkin's, 2B, Relapse
Cancer details: Diagnosed at 19, relapsed before remission
1st Symptoms: Fatigue, weight loss, night sweats
Treatment: ABVD chemo, DHAP chemo, MINE-R chemo, splenectomy, autologous bone marrow transplant
Fabiola L., Hodgkin's, Stage 2BX
Cancer details: Stage 2 with bulky disease, relapsed after 1st chemo. Remission after 2nd chemo & bone marrow transplant
1st Symptoms: Shortness of breath, dry cough, fatigue
Treatment: ABVD chemo (6 cycles), IGEV chemo, bone marrow transplant, BEAM chemo, brentuximab
Stephanie O., Hodgkin's, Stage 2B
Cancer details: Stage 2 with bulky disease
1st Symptoms: Shortness of breath, dry cough
Treatment: Stanford V chemotherapy (12 weeks, 1 infusion each week), radiation (20 days)
Chelsea B., Hodgkin's, Stage 2B
Cancer details: Diagnosed at 32
1st Symptoms: Lump in neck
Treatment: ABVD chemotherapy
Katee P., Hodgkin, Stage 2B
Cancer details: Accidentally found in x-ray after months of symptoms
1st Symptoms: Night sweats, fatigue, extreme itchiness, persistent cough
Treatment: AAVD chemo, clinical trial w/brentuximab (Adcetris) + nivolumab (Opdivo) immunotherapy
Mara T., Stage 2BX (Bulky)
1st Symptoms: Shortness of breath, back pains, daily migraines
Treatment: 3 rounds of ABVD, 3 rounds AVD, Radiation
Topics: Self-advocacy, mental health
Jade B., Hodgkin, Stage 2X
Cancer details: Diagnosed at 21 years old
1st Symptoms: Itchy legs and feet
Treatment: ABVD chemotherapy (4 treatments), AVD (remaining treatments)
Tylere P., Hodgkin, Stage 3
Cancer details: Mother is a nurse practitioner; suspected cancer
1st Symptoms: Swollen lymph nodes in neck
Treatment: Clinical trial; Chemotherapy, BMT
Kayla T., Hodgkin's, Stage 3A
Cancer details: Possibly misdiagnosed the first time; later diagnosed as grey zone lymphoma
1st Symptoms: Pulled muscle in chest
Treatment: ABVD chemo, radiation, high-dose chemo, stem cell transplant
Erica H., Hodgkin's, Stage 3B
Cancer details: Staged at 3B
1st Symptoms: Intense itchiness, fatigue, night sweats, weight loss
Treatment:ABVD chemotherapy, 6 cycles (12 infusions)
Nicole M., Hodgkin's, Stage 4
Cancer details: Staged 2 then 4 after second opinion
1st Symptoms: Extreme fatigue, persistent itching on lower half of legs
Treatment: 6 cycles (12 infusions) chemo, ABVD then AVD (dropped bleomycin)
CC W., Hodgkin's, Stage 4
Cancer details: Diagnosed at 29, misdiagnosed as mono
1st Symptoms: Achiness, extreme fatigue, reactive rash on chest and neck. Later: chills, night sweats
Treatment: ABVD chemotherapy (6 cycles)
Lia S., Nodular Sclerosis, Stage 4A
Cancer details: Most common and most treatable form of Hodgkin's lymphoma
1st Symptoms: Extreme lower back pain
Treatment: ABVD chemotherapy
Ava O., Stage 4B
1st Symptoms: Trouble digesting, weak immune system, raised glands, night sweats, chest pain, extreme fatigue
Treatment: 6 cycles of ABVD chemotherapy
Topics: Emotional grieving, mental health, letting go
Delishea A., Hodgkin's, Stage 4B
1st Symptoms: Extreme itchiness and dry cough
Treatment: 6 cycles of chemo, radiation, immunotherapy (Adcetris)
Topics: Finding community & support, self-advocacy
Emmanuel S., Relapsed Hodgkin’s
Symptoms: Enlarged lymph nodes
Treatments: Chemotherapy: ABVD, ICE; autologous stem cell transplant; Targeted therapy: Brentuximab
Kelsey R., Hodgkin’s, Stage 2A
Symptoms: Bad leg itching with no rash, enlarged lymph nodes
Treatment: ABVD chemotherapy, radiation
Manda M., Relapsed Hodgkin’s, Stage 2B
Symptoms: Loss of menstrual cycles, iron deficiency, itching, night sweats, tiredness, night terrors, trouble breathing, difficulty concentrating, enlarged lymph nodes
Treatment: ABVD chemotherapy, radiation, ICE chemotherapy, bone marrow transplant
Samantha S., Relapsed Hodgkin’s
Symptoms: Fatigue, cough, enlarged lymph node
Treatment: ABVD chemotherapy (later changed to AVD), Brentuximab, Cyclophosphamide, BEAM chemotherapy, autologous bone marrow transplant
Patrick C., Hodgkin’s Lymphoma, Stage 2B
Initial Symptom: Dry cough, difficulty breathing
Treatment: Chemotherapy (ABVD)
