Tag: advocacy

Fiorella’s Role in Cancer Advocacy Started After Her Own Breast Cancer Diagnosis

Post author By Chris Sanchez
Post date July 23, 2025
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July 23, 2025

Fiorella’s Role in Cancer Advocacy Started After Her Own Breast Cancer Diagnosis

Fiorella proudly champions cancer advocacy for patients in her country, Argentina. She was once a patient herself. In 2019, she discovered a lump in her breast during a routine self-exam. Trusting her instincts, she consulted doctors, leading to a biopsy that confirmed her diagnosis of triple positive stage 2 breast cancer. The diagnosis was shocking, but she leaned on her family and found solace and strength in their love and support.

Fiorella proactively sought a second opinion from a doctor at the Alexander Fleming Institute. In contrast with other doctors who recommended that she first have a mastectomy and then chemotherapy, the doctor recommended that she start with chemotherapy to shrink her tumor, sparing her from a mastectomy. It was sound advice. After just two chemotherapy sessions, the tumor vanished, and she underwent a lumpectomy.

Empowered by her stage 2 breast cancer experience, Fiorella emphasizes the importance of self-advocacy and informed decision-making. She believes that patients should take the initiative to research their conditions, seek second opinions, and participate in discussions about their treatment options.

Fiorella’s experience made her realize that there was a gap in patient support. She first helped out and then took the lead at VICARE GU, Argentina’s first genitourinary cancer advocacy association that focuses on kidney cancer and bladder cancer, prostate cancer, testicular cancer, and penile cancer. VICARE GU offers resources, legal support, and assistance, and also organizes community events to help patients and families get to know their conditions better and navigate their diagnoses with dignity.

Fiorella’s passionate about shattering the stigma around cancer and supporting others through shared experiences. Read her story and watch her video to learn about:

How her self-exam changed her life
The second opinion that redefined Fiorella’s treatment plan
Overcoming fear and stigma after a stage 2 breast cancer diagnosis
From patient to cancer advocate: Fiorella’s mission in Argentina
The role of family support in navigating cancer and living with dignity

Name:
- Fiorella G.
Diagnosis:
- Breast Cancer (Triple Positive)
Staging:
- Stage 2
Symptom:
- Lump in breast
Treatments:
- Chemotherapy
- Surgery: lumpectomy

Thank you to Johnson & Johnson for supporting our patient education program. The Patient Story retains full editorial control over all content.

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Table of Contents

About Me
How I Found Out I Had Stage 2 Breast Cancer
Telling My Friends and Family About My Diagnosis
I Looked for a Second Opinion
I Believe in Empowered Care
Getting Involved in Cancer Advocacy in Argentina
“Cancer” is Such a Dreaded Word
My Message For Other Cancer Patients in Latin America
How Spreading Cancer Advocacy Through VICARE GU Can Help People

Interviewed by: Stephanie Chuang
Edited by: Chris Sanchez

… I [need to] give back, to help others gain a second chance at life.

About Me

Hello, I’m Fiorella. I’m from Argentina. I was diagnosed with triple positive stage 2 breast cancer in 2019.

I’m very passionate about everything I do. I never give up on anything. When I do something, I try and try again, until I get it perfect.

I’m quite passionate about my family as well. I’m married and I have a son. Family for me is one of the most important things in my life. I think of my family in everything I do.

How I Found Out I Had Stage 2 Breast Cancer

I don’t remember all that much from the time I was diagnosed. I clearly recall, though, that I was quite frightened to have discovered my cancer.

I was working then, and my son was five years old at the time. One day, I did a breast self-examination like I always do. I found what felt like a little ball in my breast. It was alarming.

I went to see my gynecologist. He palpated me and told me it felt suspicious. He then referred me to a breast surgeon, who said the same thing. And then he sent me to have a biopsy done, which uncovered my triple positive stage 2 breast cancer.

I don’t remember all that much from the time I was diagnosed. I clearly recall, though, that I was quite frightened to have discovered my cancer.

Telling My Friends and Family About My Diagnosis

The phrase “stage 2 breast cancer” was very new for me and my family. It wasn’t something we had encountered before. That made my diagnosis and subsequent treatment very difficult for everyone. I also ended up losing my job later on, in the middle of the treatment, which made things even tougher.

But my family — my mother and father, my husband and son — had my back. They rallied around me. Even though my son was little then, he was always with me. And my close friends supported me, too.

I also had plenty of support from my doctors and medical team — the oncologist and hematologist, of course, but I had also begun to see a psycho-oncologist to provide emotional support to counter the difficulties I was starting to experience due to my breast cancer.

I Looked for a Second Opinion

As I said, stage 2 breast cancer was new to me. No one close to me had cancer or anything like that. I had to find out more about it before I committed to my treatments. I couldn’t stick with the first thing they told me back then.

One of my cousins told me, “Why don’t you look at this doctor?” And then they recommended this place called the Alexander Fleming Institute, right here in Argentina. It’s dedicated solely to cancer. Other places, even though they’ve got oncologists or other doctors on staff, might not be as focused. So I said, “Well, this has to be the place.”

I wasn’t given a set path. I had spoken with other surgeons who had said that they would need to operate first and then start chemotherapy. But the doctor I spoke with told me differently.

He said that the tumor was very large, but I was very young — and I didn’t need to have the whole breast removed. He added that it would be better to start with chemo and reduce the size of the tumor, and then operate later.

And this regimen worked. After the second session of chemotherapy, the tumor disappeared. After that, I just needed a breast-conserving surgery, a lumpectomy, to remove any tumor remnants.

I Believe in Empowered Care

“Listen to what the doctor says and do what he tells you.” I’m not very much into doing that blindly.

In all areas of my life, I prefer to find things out and get educated before deciding on something. I guess most people don’t find these things out or ask about them.

I only managed to find out about patients’ associations and patients’ rights after all my treatments were done. They don’t seem to be well-known. I kept discovering a lot of things like this afterwards.

Of course, if a treatment has to be done, it needs to be done just as the doctor says. But I would recommend speaking with others and doing a little more research before making any treatment decision.

… I would recommend speaking with others and doing a little more research before making any treatment decision.

Getting Involved in Cancer Advocacy in Argentina

I’m working to help patients in Argentina as part of a realization I had when I was finishing up with the treatment, and even after I was done. I felt I needed to give back, to help others gain a second chance at life.

I took my stage 2 breast cancer experience forward by getting involved in VICARE GU, which is the first association in Argentina for genitourinary cancer patients and their family members and friends.

Initially, I was just helping the president of VICARE GU out. But she passed away, and no one could follow in her footsteps. So I got more involved. I’m now the president.

At VICARE GU, I’ve learned so much about patients and, in general, about dedicating oneself to patients’ concerns. And connected with how I felt, that I needed to support patients getting a second chance at life, is that we provide crucial information that cancer patients, their family members, and their friends can easily access and browse.

We started with kidney cancer, then went into the bladder cancer space next, and then genitourinary cancer. And we’ve also added information on other kinds of cancer: kidney, bladder, prostate, penile, testicular, and urethral cancer.

We’ve started organizing congresses — medical meetings or conferences — for each of the cancers, and specifically aimed at patients. We started with kidney and bladder cancer, and this year, in 2025, we’ve begun to organize congresses for the other kinds of cancers. These congresses provide what patients need to understand and keep up to date about treatments for each of the cancers and learn about cancer advocacy.

We run a psychologist-managed WhatsApp group where patients can join different chats and discussions. We also participate in different international organizations, such as the International Kidney Cancer Coalition.

On the legal side, we help patients in case some kind of treatment isn’t covered. We also help patients access medication. And we also organize other activities like community talks and walks — we do two of these yearly — and mindfulness activities as well.

“Cancer” is Such a Dreaded Word

There’s still so much fear of cancer. The term really does carry some stigma. People might find it uncomfortable to know that someone has cancer.

Many patients and their family members participate in the online events or talks we organize. But when we put up an in-person event, not as many people come. It does take a bit more for people to show up in person, but people may also be a little ashamed to come.

When we speak of empathy and find that this can be missing, it’s because cancer really is stigmatized. Some people can’t even say its name, and when I invite them to events or even just say you’re helping cancer patients, they more or less give me their condolences.

I do understand this fear. I was also quite frightened in the early part of my stage 2 breast cancer experience. I equated cancer with death because I was scared of what I didn’t know.

But now that I’ve been through my experience, I know so much more about it, such as the fact that cancer isn’t necessarily a death sentence; some kinds can be managed.

Men can have a particularly hard time with cancer, even just the idea of it. They don’t like to speak up and find it hard to see a doctor for check-ups. More than anything, for them, it’s the prostate.

There’s still so much fear of cancer. The term really does carry some stigma.

My Message For Other Cancer Patients in Latin America

Those of us who’ve suffered from cancer should talk about what we went through, because experience is what counts. It’s best to share what they learned with others.

It happened to me when I had stage 2 breast cancer, and I got past it. And here I am, getting on with my life and working in cancer advocacy. It seems to me that the important thing for those who’ve had cancer, as well as those who currently have it, is to talk about it and share their experiences.

Doing so can help those who might be struggling with it, especially those who are so scared that they can’t see their way through and who could really use a little guidance and support.

I would like other patients to participate in the patients’ associations. These associations can provide powerful support that families and friends might not be able to. This is a different sort of support than oncologists and doctors can provide.

Of course, oncologists have a key role to play. They’re the only ones who might understand and with whom we have to work to make cancer better known and to make the stigma surrounding it disappear.

How Spreading Cancer Advocacy Through VICARE GU Can Help People

The most important thing VICARE GU can provide is to capture the knowledge of cancer patients and provide a resource for them and others like them. Not only for patients, but also for their family members and friends.

Speech shares information, and information is knowledge. And knowledge can decrease over time. This can lead to ignorance and fear — fear that supports the stigma of the word “cancer” for the rest of society.

VICARE GU is available to help both patients with whatever they need, to be able to live better with cancer. And it’s also free of charge for patient organizations to participate in as well.

Special thanks again to Johnson & Johnson for supporting our patient education program. The Patient Story retains full editorial control over all content.

Thank you for sharing your story, Fiorella!

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Hasegawa Kazuo’s Stage 4 Lung Cancer Mission to Help Others

Post author By Chris Sanchez
Post date July 5, 2025
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Hasegawa Kazuo Turned His Stage 4 Lung Cancer Diagnosis Into a Mission to Help Others

July 5, 2025

It started with a cough that just wouldn’t go away. How can you tell if the symptoms are the common cold or something worse? (like stage 4 lung cancer) This was Kazuo Hasegawa’s concern after he continued to cough for weeks. But everything changed when he started to cough up blood.

Kazuo ended up in the emergency room where doctors eventually ordered imaging. A scan revealed a shadow on his lungs. Reality became clear to him even though the doctor hesitated to say anything about cancer. The diagnosis would be stage 4 lung cancer.

Interviewed by: Stephanie Chuang
Edited by: Chris Sanchez & Jeff Forslund

Editor’s Note: This interview was conducted in Japanese. It has been translated for clarity into English.

His mind went first to his young children who were just five and seven years old at the time. He struggled to tell them exactly what he was dealing with, so he told them he was “sick.” At the same time, the father of two was also having a hard time figuring out how to navigate the healthcare system in his home country of Japan. He says many people there follow what doctors say, but he decided to advocate for himself, getting multiple “second” opinions.

Now he’s galvanized a group of thousands of other Japanese people who are dealing with cancer by creating the first patient advocacy group of its kind there called “One Step.” Dive into Kazuo’s incredible story of self-advocacy and empowerment, and how he’s trying to help strangers navigate a healthcare system to get the best outcomes for themselves and their loved ones.

Watch Hasegawa Kazuo’s video and read his story to take a deeper dive into:

A terrible cough led to a diagnosis of advanced lung cancer
The initial prognosis was ten months to live
Faced with uncertainty, he became an advocate for patient access to information
Kazuo founded One Step to support other patients
He now lives with intention, knowing each day is irreplaceable

Name:
- Hasegawa Kazuo
Diagnosis:
- Lung Cancer (Pulmonary Adenocarcinoma)
Staging:
- Stage 4
Symptoms:
- Persistent cough that lasted two months
- Coughed up blood on one occasion
- Worsening headache
Treatments:
- Chemotherapy
- Clinical trial

Thank you to Johnson & Johnson for supporting our patient education program. The Patient Story retains full editorial control over all content.

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Table of Contents

About Me
The Cough That Changed Everything
How I Found Out I Had Stage 4 Lung Cancer
How I Reacted to My Diagnosis
I Got Ten Different Second Opinions
Owning My Own Data
Shared Treatment Decisions
Stronger Patient Empowerment with 'One Step'
There is Hope in Stage 4 Lung Cancer
How I See the World Now

I’ve come to really feel the importance of time. Everyone only has one life.

About Me

My name is Hasegawa Kazuo. I’m a father of two. I used to work as a TV director in Japan.

I was diagnosed with stage 4 lung cancer (pulmonary adenocarcinoma) in 2010. And since, I’ve come to really feel the importance of time. Everyone only has one life.

The Cough That Changed Everything

It all started back in 2010, with a terrible cough. At first, I thought it was nothing, just a cold. I ended up having that cough for two months.

One night, it got so bad that I had to be taken to the hospital. There, I coughed up blood.

I had a terrible headache when the symptoms first appeared. It just kept getting worse. I remember thinking, “Something strange is happening.”

How I Found Out I Had Stage 4 Lung Cancer

In the examination room, I had a CT scan. It found a big shadow on my lungs.

The doctor was very silent about it, however, and seemed hesitant to tell me if I had pneumonia or something like that. He looked uncomfortable, like he wasn’t sure how to tell me. I kept wondering why he wouldn’t just say what he saw. A simple explanation like, “There might be something suspicious. We should do more tests,” would have helped. But he stayed quiet, and that left me to fill in the blanks myself.

My wife was with me when I found out. Our children were seven and five years old at the time. We struggled with how to tell them. In the end, I didn’t use the word “cancer.” I just said I had a serious illness, but that I was going to try my best to get better. And they supported me, even at that young age.

But even though the word “cancer” scared me, it was better than not knowing at all.

How I Reacted to My Diagnosis

Strangely, once I finally had a name for what was happening to my body, I felt some relief. When I was in the hospital, before I knew it was cancer, I couldn’t look anything up. The fear of the unknown overwhelmed me.

But even though the word “cancer” scared me, it was better than not knowing at all. I still think those few days of not knowing were worse than the diagnosis itself.

I Got Ten Different Second Opinions

A normal hospital visit takes just five to ten minutes. I’ve been told that the median survival time is 12 months, and the doctor told me that I have about ten months left to live if I keep going at this pace.

Given that, five to ten minutes in the examination room is not enough time to think about how I will face my cancer. What would my next move be?

So I ended up getting ten different second opinions so I could see every treatment option available to me for my stage 4 lung cancer.

Your health data should be in your hands… I wanted to make informed choices about my treatment, and I couldn’t do that without understanding what was going on inside my body.

Owning My Own Data

It shocked me how little time you actually get with a doctor. Five or ten minutes is not enough to make big decisions or understand your options. If you want to talk strategy, you have to pay extra or find time outside the system.

That’s why I decided to take control of my own medical data. I started asking for my records: CT scans, PET scans, everything. I had to buy the reports. The data for one report costs about 3,000 Japanese yen. (a little more than $20 US dollars) The hospital put the files on a CD-ROM, and I kept them. I wanted to be in charge of my care. I didn’t understand why other patients just left their information with the hospital and only asked for it when they needed something.

Your health data should be in your hands. You should decide what to do with it. I wanted to make informed choices about my treatment, and I couldn’t do that without understanding what was going on inside my body.

Shared Treatment Decisions

I’ve learned that modern cancer care, especially lung cancer, isn’t just about doing what the doctor says. It’s about discussing your options together. The latest trend is for patients and doctors to consult and make decisions as a team. We have to understand what quality of life means to us. Treatment isn’t just about surviving, it’s about how we live.

Doctors should be clear and direct. They need to say, “This is what’s happening inside you. Here are your options.” Then patients can decide what matters most to them. That conversation is crucial.

kazuo hairloss from stage 4 lung cancer treatment

I’m taking my stage 4 lung cancer experience forward by helping other patients become empowered.

Stronger Patient Empowerment with ‘One Step’

Right now in Japan, most of the information available to patients comes from textbooks. But that’s not enough. It’s like learning boxing from a book and then being thrown into a match. You’d be terrified. You need practice first. Cancer treatment doesn’t give you that time to prepare. The match starts immediately. That’s why I want to provide better resources in that in-between space.

I’m taking my stage 4 lung cancer experience forward by helping other patients become empowered.

That’s why I helped start a patient group called One Step. The main vision of the group is to help create the courage to live. The group now reaches 12,000 people, mostly lung cancer patients and caregivers throughout Japan.

We try to provide useful information: details about treatment, financial support, and what’s happening in the world of cancer care. We also push for patient involvement in research. Instead of just leaving everything to doctors and scientists, we want patients to be part of the process.

We even helped propose a clinical trial, and it got approved. That showed me what’s possible when patients are involved from the start.

When you find yourself saying, “I’ve never faced such a dilemma before”… It helps to ask yourself: What are my values? What do I truly cherish?

There is Hope in Stage 4 Lung Cancer

When you find yourself saying, “I’ve never faced such a dilemma before,” it’s time to consult with others and make a decision. It helps to ask yourself: What are my values? What do I truly cherish? Or, if you were seeing a doctor, you’d bring in information about your physical condition or scientific evidence, and then you’d discuss it together. That’s the kind of process that’s the latest topic in lung cancer right now.

Treatment has evolved. The doctor’s decision or the patient’s decision is not the only decision, but now it’s the choice.

You are making a completely different choice based on your values. It’s very important that you look at the situation from a bird’s-eye view and let patients know that they have a choice to make right now. Of course, in some situations, you should just accept what the doctor says. If you have a major disease like cancer, you won’t know how to deal with it or treat it. You must learn about these things.

So patients are going to have an increasing amount of options for treatment, specific information that they can interpret, and choices regarding treatment and so on. And they are going to be able to think of how to make those choices for themselves. And those treatments are going to evolve more and more.

I want to live. And I believe I can. That belief drives my daily life. I keep going, one step at a time. Maybe this is the answer. Maybe it isn’t. But I’m going to try.

How I See the World Now

Motivation is a wonderful thing. I want to live my life with no regrets.

I think about that, and about my stage 4 lung cancer experience, when I wake up today, the first thing I do is to tell myself that I have only one today. I think it’s because it’s obvious to me that my life is shorter than others’ lives. So I want to do something that makes my life more satisfying.

You see scenes in dramas and on TV where people say goodbye to their families with grace, but I don’t feel that everyone gets to have that kind of ending. Some people die angry or confused, asking, “Why me?” I don’t want to live that way.

Even if my life is short, I want to be satisfied with it. I want to live. And I believe I can. That belief drives my daily life. I keep going, one step at a time. Maybe this is the answer. Maybe it isn’t. But I’m going to try.

Special thanks again to Johnson & Johnson for supporting our patient education program. The Patient Story retains full editorial control over all content.

Thank you for sharing your story, Hasegawa Kazuo!

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The Importance of Cancer Screening in Communities of Color

Post author By Katrina Villareal
Post date March 10, 2025
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March 10, 2025

The Importance of Cancer Screening in Communities of Color | Dr. Colin Ottey

Dr. Colin Ottey, an internal medicine physician and the Executive Medical Director at Advance Community Health in Raleigh, NC, has a passion for providing care to underserved communities and addressing health disparities.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

He discusses the barriers that often prevent people from seeking medical care and offers suggestions on how to improve access to healthcare. He underscores the importance of preventative care, especially crucial for the Black and African American community and people of color. He shares why building trust between healthcare providers and patients of color is vital and how by working together, patients and healthcare professionals can break barriers, improve access, and achieve better health outcomes.

This interview is part of our series Continuing the Dream – honoring Black and African American contributions to healthcare through storytelling and community gatherings

Thank you to AbbVie, Genmab, and Karyopharm for supporting our patient education programming. The Patient Story retains full editorial control over all content

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Table of Contents

Introduction
Why People Don’t Want to See a Doctor
Importance of Getting Access to Preventative Care
How Healthcare Providers Can Build Trust with Patients of Color to Address Health Disparities
How Patients Can Establish Relationships with Their Healthcare Providers

Introduction

I’m an internal medicine physician. I’m the Executive Medical Director of Advance Community Health in Raleigh, North Carolina, which has been around for over 50 years. Advance provides primary care services to individuals in Wake County and Franklin County.

I grew up in Jamaica. I attended college at Brooklyn College and medical school at the University of Illinois at Chicago. I have a special interest in primary care, providing care to the underserved, and working to help reduce health disparities.

What drew me to medicine was the desire to care for people. Growing up, I always liked that doctors were able to prescribe medications that made me feel better afterward. I felt like I would be like those who cared for me as a young child.

As a physician at Advance, I have a great opportunity to serve people, especially those who are underserved or dealing with health disparities, and to influence the care that we can provide as an organization.

Sometimes they feel like they’re better off not knowing if something is wrong with them.

Why People Don’t Want to See a Doctor

Fear is one of the biggest reasons people don’t want to go to a doctor. Sometimes, people don’t want to know they have a medical condition. The lack of knowledge, assumption of what the condition may be, or the outcome of that condition creates a level of fear. Sometimes they feel that they’re better off not knowing if something is wrong with them.

We also have to deal with some social determinants as well. People may not be able to get time off from work to go to the doctor. They have to arrange child care if they have children to take care of. Lack of insurance or financial resources could be a barrier as well. If they live in a rural community, they may have limited specialty services and primary care services as well. If they don’t have transportation, they might not be able to access health care in a center like Raleigh. That’s why we have to make health care more flexible so people can access these services.

One patient who was in his 40s at the time and had a family history of prostate cancer… It turned out that he had prostate cancer, even though he had a normal PSA. Had he not done the digital rectal exam, which a lot of men are afraid to undergo, we would not have discovered his cancer at the time.

Importance of Getting Access to Preventative Care

African Americans or people of color need to get screened because it can help reduce health disparities. Early detection and screening can help people get care much earlier during a disease process than waiting until they start experiencing symptoms, at which time, these conditions could be in terminal stages where very little can be done to treat their conditions.

It’s important to get screening so that we can reduce morbidity and mortality as it relates to those specific conditions. With numerous screening tools available, individuals can access them through their primary care physicians or providers.

I had one patient who was in his 40s at the time and had a family history of prostate cancer, so we always talked about that. He had a normal PSA because we were monitoring. It turned out that he had prostate cancer, even though he had a normal PSA.

The result of one of the exams that I did was concerning to me, so I referred him to a urologist. Had he not done the digital rectal exam, which a lot of men are afraid to undergo, we would not have discovered his cancer at the time. It’s important for men to not be afraid of the digital rectal exam to get screened for prostate cancer. They can always do a PSA test, but the combination is very helpful in terms of screening for prostate cancer. There are a lot of treatments for prostate cancer that could also help reduce morbidity in African-American men.

Providers need to be able to develop relationships with their patients… We have to do is to treat patients the same way we would like to be treated if we were a patient.

How Healthcare Providers Can Build Trust with Patients of Color to Address Health Disparities

We need more healthcare providers of color. People can relate to each other and that will help to build trust. Providers need to be able to develop relationships with their patients. That’s where cultural competency comes into play because sometimes, even though you might identify with the person’s ethnicity if you’re able to develop an understanding of their culture and who they are as a person, you can develop trust with that patient.

Sometimes, patients feel as if providers are delaying care or preventing them from getting certain types of care that they need. What they don’t understand is that we have barriers that we’re dealing with, such as issues with insurance companies that can approve or deny services.

What we have to do is to treat patients the same way we would like to be treated if we were a patient. We have to give patients the level of respect that they need, regardless of their age. See the person as a human being and not as a disease process.

Miss Brown doesn’t just have diabetes. The patient is a diabetic, but she’s a person. She’s a mother and probably a grandmother. She’s probably someone who has been working for X number of years. She could be a person who’s in charge of a department at her job. She’s as important as we are as physicians. We should try to give them that level of respect and allow patients to share their concerns. We should always have room for that in our visits.

Patients should not be afraid to communicate with their providers when they want to ask questions.

How Patients Can Establish Relationships with Their Healthcare Providers

Patients should not be afraid to communicate with their providers when they want to ask questions. They should know their main condition. They should know if there’s something that can be done to treat their medical conditions. They should speak to their providers and say, “I’m X years old now. What things do you think I need as far as my health screening?” They should open that dialogue with their provider and not be afraid to talk to them.

With technology now, we can do a telehealth visit, if they’re uncomfortable with a direct, face-to-face visit with their provider. Telemedicine can help break down some of those barriers. That could be a gateway to get people into the office with a provider directly.

Special thanks again to AbbVie, Genmab, and Karyopharm for supporting our patient education programming. The Patient Story retains full editorial control over all content

Stories from Raleigh, NC

Dr. Brandon Blue

Dr. Brandon Blue shares key strategies for better health care and saving lives, especially in communities impacted by multiple myeloma.

The Importance of Cancer Screening | Dr. Colin Ottey

An internal medicine physician discusses healthcare access, preventative care, patient trust, and how both doctors and patients can improve relationships for better outcomes.

The Importance of Cancer Screening | Lemuel Eley

Heart attack survivor at 44 shares his story, advocating for health screenings and proactive care in the African-American community.

Dr. Marjory Charlot, Oncology

UNC oncologist discusses increasing awareness and access to clinical trials among Black communities

Roshonda C., Rectal Cancer, Stage 4

Symptoms: Blood in stool, blood from rectum after intercourse, sensation of incomplete bowel movements
Treatments: Chemotherapy, surgery, radiation

Tags advocacy, cancer screening, Continuing the Dream, Diversity

Patient Stories Prostate Cancer Prostatectomy Surgery Treatments

Tom’s Stage 2 Prostate Cancer Story

Post author By Chris Sanchez
Post date February 10, 2025
No Comments on Tom’s Stage 2 Prostate Cancer Story

February 10, 2025

Tom’s Stage 2 Prostate Cancer Story

Tom, a prostate cancer survivor from Dallas, TX, shared his journey since being diagnosed on his birthday in 2015. Initially, the diagnosis devastated him, especially since he prided himself on being fit and healthy and had always taken proactive measures to monitor his health. Despite the absence of symptoms, he maintained regular PSA tests, which eventually showed increasing levels. This led to a biopsy confirming his cancer.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Consequently, Tom experienced a whirlwind of emotions, magnified by having witnessed his best friend succumb to prostate cancer a year prior. But he was determined to face his own battle differently. Faced with treatment options for his prostate cancer, Tom chose a prostatectomy to eliminate the cancer, fearing its potential spread. His surgery was successful because his doctors found that the cancer had remained contained in the prostate.

However, his recovery was not without challenges. Tom had undergone rigorous physical training prior to surgery, believing it would help him recover faster, but despite this preparation, recovery still proved difficult. He discusses the changes and challenges post-recovery, including diminished sexual function and initial incontinence. However, these side effects, part of his new normal, have not deterred him from living an active life. He relied on perseverance, maintaining mobility, and activity.

Tom’s mindset transformation, inspired by his friend’s advice and his own experiences as an Ironman triathlete, played a pivotal role in his recovery. The Ironman motto, “anything is possible,” encouraged him to set goals, like walking his daughter down the aisle and participating in another Ironman event, both of which he achieved.

Tom continued to exercise vigilance and undertake his proactive health practices after his successful treatment. For the first 5 years post-surgery, he had bi-annual PSA tests, transitioning to annual check-ups in the subsequent years. He emphasizes the significance of these tests in reducing cancer recurrence risks.

Tom has also turned to advocacy to help others avoid the isolation he felt during his journey. He joined and contributed to organizations like Zero Prostate Cancer and Mary Crowley Cancer Research, advocating for patient perspectives in treatment options.

Tom reflects on the importance of having a support system, acknowledging the mistake of isolating himself initially. He emphasizes the necessity of open conversations about cancer, advocating for a community and shared experiences. Furthermore, he shares that conquering fears can reveal hidden strength. His journey has enabled him to help others through advocacy and support, fulfilling his life’s purpose.

Name:
- Tom H.
Diagnosis:
- Prostate cancer
Age at Diagnosis:
- 61
Staging:
- Stage 2
Symptoms:
- None
Treatment:
- Surgery (prostatectomy)

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

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This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

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Emily’s mission goes beyond her personal battle. She hopes her journey demonstrates the power of resilience, community, and faith in facing life’s greatest challenges. Through her advocacy, she continues to bring light and support to countless individuals navigating the trials of cancer.

Name:
- Emily K.
Diagnosis:
- Colon cancer
Staging:
- Stage 4
Age at Diagnosis:
- 27
Symptoms:
- Abdominal pain
- Blood in stool
Treatments:
- Surgery
- Immunotherapy
- Targeted therapy
- Clinical trials

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

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This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Thank you for sharing your story, Lizzie!

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Yiwei reacted calmly to the diagnosis, despite having being a healthy individual for over 20 years. His family, however, was shocked when they first learned of his cancer, particularly his daughter Summer, who recalls how the news interrupted a casual dinner outing. Summer, like her father, had initially thought he had contracted COVID-19, making the cancer diagnosis even more unexpected.

Yiwei underwent 6 rounds of chemotherapy followed by radiation, which he tolerated well, experiencing minimal side effects beyond hair loss. However, soon after completing his initial treatments in early 2023, his cancer relapsed, with tumors returning in his chest and appearing in his liver. This led to a second round of chemotherapy combined with CAR T-cell therapy. By August 2023, scans showed no evidence of cancer, and follow-up PET scans have continued to confirm his remission.

Summer highlights the long, complicated diagnosis process as a key reason for sharing their story on social media. Through her TikTok account, she raises awareness about the possible early signs of cancer, such as the persistent skin issues her father experienced, and the importance of advocating for one’s health. Her videos have connected with a broader community of cancer patients and survivors, helping others identify concerning symptoms and seek timely medical advice.

Yiwei further elaborates on CAR T-cell therapy, which uses the body’s own immune cells to fight cancer. He expresses admiration for this innovative treatment, noting its effectiveness in his case despite some potential side effects, including a temporary drop in his platelet count.

Both Yiwei and Summer emphasize the importance of mental strength during treatment. Yiwei advises others to stay calm and not to worry excessively, as stress can negatively impact recovery. Summer adds that loved ones can offer reassurance and practical help to support patients through their treatment. Together, they hope their story inspires others to stay vigilant about early symptoms and remain hopeful throughout their cancer journeys.

Name:
- Yiwei T.
Age at Diagnosis:
- 50
Diagnosis:
- non-Hodgkin lymphoma (Primary mediastinal large B-cell lymphoma [PMBCL])
Staging:
- Stage 3
Initial Symptoms:
- Intense itching and rashes
- Shortness of breath
- Extreme fatigue
- Elevated heart rate
- Lower than normal blood oxygen levels
Treatment:
- Chemotherapy
- Radiation
- CAR T-Cell Therapy

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Thank you for sharing your story, Yiwei and Summer!

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Fiorella’s Role in Cancer Advocacy Started After Her Own Breast Cancer Diagnosis

About Me

How I Found Out I Had Stage 2 Breast Cancer

Telling My Friends and Family About My Diagnosis

I Looked for a Second Opinion

I Believe in Empowered Care

Getting Involved in Cancer Advocacy in Argentina

“Cancer” is Such a Dreaded Word

My Message For Other Cancer Patients in Latin America

How Spreading Cancer Advocacy Through VICARE GU Can Help People

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Hasegawa Kazuo Turned His Stage 4 Lung Cancer Diagnosis Into a Mission to Help Others

About Me

The Cough That Changed Everything

How I Found Out I Had Stage 4 Lung Cancer

How I Reacted to My Diagnosis

I Got Ten Different Second Opinions

Owning My Own Data

Shared Treatment Decisions

Stronger Patient Empowerment with ‘One Step’

There is Hope in Stage 4 Lung Cancer

How I See the World Now

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The Importance of Cancer Screening in Communities of Color | Dr. Colin Ottey

Introduction

Why People Don’t Want to See a Doctor

Importance of Getting Access to Preventative Care

How Healthcare Providers Can Build Trust with Patients of Color to Address Health Disparities

How Patients Can Establish Relationships with Their Healthcare Providers

Stories from Raleigh, NC

Tom’s Stage 2 Prostate Cancer Story

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Laurie’s Stage 4 Follicular Non-Hodgkin Lymphoma Story

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Emily’s Stage 4 Colon Cancer Story

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Lizzie’s Thyroid Cancer Story

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Yiwei and Summer’s Stage 3 Non-Hodgkin Lymphoma Story

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