Navigating the Unknown: Roberta’s Journey to a Follicular Lymphoma Diagnosis

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Follicular lymphoma survivor Roberta was stunned by her blood cancer diagnosis. Watch as she shares her journey from a prolonged time to diagnosis and through her experience with shared decision-making, O-CHOP, and support from both loved ones and her online support group.

See More from START HERE Follicular Lymphoma

Related Resources:

From Disbelief to Determination: My Follicular Lymphoma Journey

From Disbelief to Determination: My Follicular Lymphoma Journey

 Strength in Shared Decisions: Juanita’s Follicular Lymphoma Journey

Strength in Shared Decisions: Juanita’s Follicular Lymphoma Journey

 What Are Common Follicular Lymphoma Treatment Side Effects?

What Are Common Follicular Lymphoma Treatment Side Effects? 

Transcript:

Voiceover:

Understanding and participating in your treatment decisions can transform your journey. Hear Roberta’s story of navigating her follicular lymphoma diagnosis and see how shared decision-making empowered her path to care.

Roberta:

Hi, My name is Roberta, and I was stunned to receive my follicular lymphoma diagnosis at age 56. My journey to my diagnosis of follicular lymphoma was a prolonged one. Thinking back about my path to a confirmed diagnosis and treatment, I think it took so long because I wasn’t having any noticeable symptoms other than the lump in my lymph nodes.

Even though I was diagnosed with follicular lymphoma early in my cancer journey, it took many visits to other doctors and specialists to finally receive my specific diagnosis. That extended part of the journey to confirm my initial diagnosis took 6 months. I came to understand that follicular lymphoma wasn’t well-known – at least not where I lived in Australia.

When I became too frustrated with all the running around for tests, I decided to find a different primary provider. I felt that my new doctor really listened to everything I’d been through since I was first told I had FL. We discussed the lack of knowledge about follicular lymphoma and made a shared decision that I should go to a blood cancer clinic to re-check the possibility of my initial FL diagnosis. After an examination and testing, they indeed confirmed that I had follicular lymphoma. Oddly, I experienced a  wave of relief upon hearing my confirmed diagnosis. Now I could focus on the treatment part of my journey with the support of my loving partner, friends, and family.

Strength in Shared Decisions: Juanita’s Follicular Lymphoma Journey

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Follicular lymphoma survivor Juanita was shaken with her diagnosis at age 42. Watch as she shares her story as a single mom through her cancer journey, shared decision-making, and support coordinated by a patient navigator.

See More from START HERE Follicular Lymphoma

Related Resources:

From Disbelief to Determination: My Follicular Lymphoma Journey

From Disbelief to Determination: My Follicular Lymphoma Journey

 Navigating the Unknown: Roberta’s Journey to a Follicular Lymphoma Diagnosis

Navigating the Unknown: Roberta’s Journey to a Follicular Lymphoma Diagnosis

 Newly Diagnosed Follicular Lymphoma and Treatment Options

Newly Diagnosed Follicular Lymphoma and Treatment Options 

Transcript:

Voiceover:

Shared decision-making (SDM) in healthcare typically begins as soon as a significant health decision needs to be made. It empowers you to take an active role in your care. Hear Juanita’s story and discover how it could inspire your own journey.

Juanita:

Hi, My name is Juanita, and I was shaken to learn of my follicular lymphoma diagnosis at age 42. Even though I felt like something was “off” in my body, I never imagined that I could have cancer. My diagnosis was only discovered after my doctor ran additional testing after she saw abnormal levels in my blood tests.

As a single mom with a young “tween” son and daughter, I had no idea how I was going to handle cancer treatment while I also had to take care of my kids.  My doctor wanted to discuss my treatment options with me. I wasn’t sure about moving forward with treatment right away, and she wanted us to make the decision as a team. I told her my concerns about also taking care of my kids, and she connected me with  a patient navigator right away. After learning about the volunteer help I could receive along with friends  who offered to help me, I told my doctor I was ready to start the treatment we discussed – radiation followed by chemotherapy. 

The patient navigator had a non-profit organization contact me, and they assigned a volunteer. The volunteer was an absolute godsend. She drove me to my appointments and also cooked meals and transported my kids from their after school sports. She also encouraged me to join an online support group, which has been incredibly helpful for me. It has been surprisingly therapeutic for me to share my cancer story. It has helped me with my journey, and I’ve also shared what I’ve learned to help others through their journeys.

I’ve now completed my rounds of radiation therapy and chemotherapy. I receive regular scans, and I’m doing well and enjoying life with my kids. I’ll be happy to keep sharing my story to help others who may be struggling with cancer. I surprised myself with my strength and am confident that others can surprise themselves too.

From Disbelief to Determination: My Follicular Lymphoma Journey

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Follicular lymphoma survivor Jerome was shocked with disbelief when he received his diagnosis. Watch as he shares his experience that began as a marathon runner and through his journey with R-CHOP, shared decision-making, benefits of exercise, and support groups.

See More from START HERE Follicular Lymphoma

Related Resources:

Strength in Shared Decisions: Juanita’s Follicular Lymphoma Journey

Strength in Shared Decisions: Juanita’s Follicular Lymphoma Journey

 Navigating the Unknown: Roberta’s Journey to a Follicular Lymphoma Diagnosis

Navigating the Unknown: Roberta’s Journey to a Follicular Lymphoma Diagnosis

Defining Survivorship for Relapsed/Refractory Follicular Lymphoma

Defining Survivorship for Relapsed/Refractory Follicular Lymphoma 

Transcript:

Voiceover:

Shared decision-making involves collaboration between patients and healthcare providers to make decisions that align with the patient’s values, preferences, and individual circumstances.  Listen to Jerome’s journey from shattered with disbelief to being informed  and how it transformed his journey.

Jerome:

Hi, My name is Jerome, and I was shocked to my core to receive my follicular lymphoma diagnosis at age 40. I take pride in living a healthy lifestyle and running marathons on a regular basis in Colorado, so I was truly in disbelief when I received my follicular lymphoma diagnosis. The only symptom that I had along with the lump in my lymph nodes was some slight weight loss, but my diagnosis came back as follicular lymphoma after my lymph node biopsy and blood tests.

 As someone who prefers to attack challenges, I found it frustrating to have to wait a few weeks before starting treatment. After talking with my doctor, she put my worries at ease.  We then discussed my treatment options and made the shared decision that R-CHOP would be the best treatment option for me. My wife was in complete agreement about the treatment decision and has been an incredible support for not only me but for our two teenage sons.

 And some patients in my online support group have been in disbelief about my upcoming marathon plans. Even during my toughest days, I always made efforts to at least do some walking down the hallway. It may sound simple, but I feel that it made a measurable impact on my quality of life during and following treatment. Even in small amounts, I feel that exercise helps cancer patients in their recovery. My doctor agrees with this theory as well, as she’s witnessed the difference that physical activity has made with her patients’ recovery times.

To other patients and caregivers out there, I hope sharing my story helps you or your loved one on your journey. I’ve educated myself about follicular lymphoma treatments, and the future of care looks bright. Even though my journey began with being shattered with disbelief, I now feel whole and hopeful for all patients facing  follicular lymphoma.