Roshonda shares her story as an “ostomy warrior” after she was diagnosed with rectal cancer in 2022. Her initial symptoms included blood in her stool and a sensation of incomplete bowel movements in 2021. When she first visited a doctor, she attributed the symptoms to hemorrhoids. As her symptoms progressed, including seeing blood after sexual activity and worsening discomfort, she switched to Medicaid and a new healthcare provider, eventually leading to a colonoscopy in March 2022. The procedure revealed a mass and 3 polyps in her rectum, resulting in a rectal cancer diagnosis that devastated her, as memories of her late father’s battle with cancer resurfaced. She also had a spot on her lung which brought her diagnosis to stage 4.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Following her diagnosis, Roshonda met her team of specialists and began 6 weeks of daily radiation and oral chemotherapy. Despite the challenges, including burning pain, skin darkening, and intense discomfort, she persevered. Unfortunately, she lost her longtime job, and her unemployment benefits ended shortly after her diagnosis, complicating her financial situation. Thankfully, her mother and grandmother provided support, covering bills and easing some of the burden.
Despite the intense treatment, Roshonda’s tumor did not initially shrink enough. Her oncologist advised further treatment with intravenous chemotherapy, which involved 8 sessions over 4 months. These sessions were grueling, leaving her nauseated and exhausted. Reflecting on the mental toll, Roshonda stresses the importance of maintaining a positive outlook, which she believes helps many cancer patients manage their journey.
Facing surgery to remove her rectum and anus due to the tumor’s location, Roshonda had to decide between keeping the anal area, risking potential recurrence, or opting for a complete removal with a lifelong colostomy bag. She chose the latter, enduring significant pain after the procedure, with limited mobility and initial difficulty sitting.
Roshonda joined an online ostomy support group before surgery, learning from others’ experiences and finding comfort in a community of people facing similar challenges. This network has been invaluable, especially since she is the only one in her family with an ostomy bag.
Sharing her rectal cancer journey on TikTok and Facebook, Roshonda aims to raise awareness about colorectal cancer, particularly within the Black community, which faces higher incidence rates. She encourages early screenings and prompt medical attention for symptoms. Gospel music and faith have helped her find peace, especially a song that resonated deeply with her, helping her surrender her worries before surgery.
Adjusting to life with a colostomy bag, Roshonda emphasizes listening to her body and finding what works best for her. Though the journey has been painful and challenging, she remains grateful for her support network, faith, and the resilience she’s developed throughout her battle.
Name:
Roshonda C.
Age at Diagnosis:
37
Diagnosis:
Rectal cancer
Staging:
Stage 4
Initial Symptoms:
Blood in stool
Blood from rectum after intercourse
Sensation of incomplete bowel movements
Treatment:
Chemotherapy
Surgery
Radiation
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
A Cancer Scare Taught Me the Importance of Screening | Jasmine Smith
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
Jasmine passionately advocates for cancer screenings and philanthropy, driven by her own health scare and lifelong commitment to giving back. Earlier in 2024, she faced a breast cancer scare when an abnormal mammogram led to a biopsy. Thankfully, results revealed dense breast tissue, common among African American women, but the experience reinforced her belief in the power of early detection. Jasmine urges people to trust their instincts and prioritize regular health checks, emphasizing that it is better to know.
As a regional foundation member of Jack and Jill of America, Jasmine connects people to empower African American youth and the nation’s youth as a whole, fostering future leaders through education and community support. Her role spans fundraising and community service across multiple states. She highlights the importance of organizations like Jack and Jill of America in educating communities on health issues and ensuring accessible healthcare resources.
Jasmine stresses the importance of self-care, using the example of a medical emergency her husband faced as a testament to the value of knowing one’s health history. She educates healthcare providers about available resources like North Carolina’s expansive Medicaid system, striving to help communities leverage existing support. Jasmine’s story is a call to action for proactive health management and community empowerment.
Thank you to Abbvie, Genmab, and Karyopharm for their support of 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.
The biggest lesson I learned is that it’s better to know.
Introduction
My name is Jasmine.
I’ve never had cancer, but because earlier this year, I thought I might actually have breast cancer, I’m now a big advocate for cancer screenings.
I would say I’m a philanthropist. I’m all about giving back. I’ve been very blessed throughout my life.
I’ve come from humble beginnings, and feel so blessed now to be able to give back in a lot of different ways. And so I think at the heart of who I am, I’m about giving back and philanthropy.
Who I am at my core is I am a connector. I love bringing people together from different avenues of life and figuring out what we can do together, how we can harness our strengths to make this world a better place. I have done that through my job.
Her work for Jack and Jill of America
I’ve brought people together through various organizations that I volunteer with, such as Jack and Jill of America Incorporated, where I’m a regional foundation member at large.
And it’s really where my heart and my passion lies.
Jack and Jill of America is an organization of mothers founded in 1938 that works to build future leaders of America. Our children and our teens are our future educators, connectors, and leaders.
And so at Jack and Jill, we rally as mothers behind our African American teens and all our children, and building them up.
We help our teens to realize their passions. We help them to create and learn their strengths, and then we enable and empower them to become leaders in this world. And so, we are hopefully building a bench for a greater future.
I am the lead for the philanthropic efforts of 32 chapters in North America, in North Carolina, South Carolina, and Virginia, specifically. And that includes fundraising, community service, and grants and philanthropic giving.
Breast Cancer Scare
So this is how my breast cancer scare went.
It actually happened earlier this year. I went for a mammogram, and it came back abnormal.
I’ve had an abnormal mammogram before, and so I wasn’t too worried, but this time, I had to go through a biopsy, and lie down on this huge table, and have them primp and prod and do all these things to get the right imaging.
And it was a scary few days before the biopsy results came back and showed that everything was good, it just really dense breast tissue, which happens to a lot of African American women.
So it ended on a positive note. But it was such a scary time. It was a scary procedure. Not knowing what the outcome was going to be was very scary for sure.
I should also add that breast cancer doesn’t run in my family.
… it’s so crucial to listen to yourself and trust your intuition.
Takeaways from Jasmine’s Cancer Scare
“It’s better to know”
The biggest lesson for me from my experience is the importance of knowing.
So originally I didn’t want to go. I had I think I had waited another year or two from my last mammogram and it was like, oh, I’m good. I don’t really need to go.
But then something inside me said, you better go. And so I finally went, and of course I ended up getting cleared.
You know, having all the resources available to me yet still hesitating to go is awful. So I would say the biggest lesson I learned is that it’s better to know.
It’s better to go get checked and to know if there’s anything you need to be aware of and to take care of.
Listen to yourself
And another important point is that it’s so crucial to listen to yourself and trust your intuition.
God, or whomever you might believe in, gives us this instinct, this sixth sense about yourself and or about your situation. And it’s so important to listen to that.
Don’t wait. Something is telling you to go get checked. So go get checked.
Hey, even if something isn’t telling you to get checked, you really should still go and get yourself looked at. It’s something we women should do every year.
You really need to take to heart your health and your life.
And if you don’t take care of yourself, who’s going to take care of your family?
So you have to take care of yourself first.
Encourage others to get themselves checked
I really encourage everyone to go get those mammograms, and have themselves checked for anything.
So I make it a point to encourage others to go and do so, beginning with my daughter, who is 15 years old.
Earlier this year, I didn’t manage to tell her about my scare immediately as she was out of town. But we have talked about the importance of going to the doctor every year, both she and I.
And so she definitely gets her checkups and, and now is at a point where she goes and she sees the doctor by herself.
Having that one on one personal relationship with your doctor is really important. And she definitely understands and respects that relationship.
Work to break the cycle
Organizations like Jack and Jill of America and the Divine Nine have a key role to play in helping future generations break the cycle and get better healthcare. They are essential in getting the word out to African American individuals, leaders, and children.
People respect us. We are at the heart of these communities. We have a voice people want to listen to, and when we speak up, they listen.
And so it’s really important that all of these groups reach out and do education, build relationships, and work to educate the community at large about all of these important issues, such as vaccinations and diseases such as diabetes and heart disease.
There are a lot of resources at our fingertips and at our disposal.
Make sure you know what these resources are.
Take care of yourself first
You really need to take to heart your health and your life. And if you don’t take care of yourself, who’s going to take care of your family? So you have to take care of yourself first.
Whether you’re a mom or a dad or anyone, there are other people relying on you, and you cannot take care of them until you take care of you. Because if you don’t prioritize yourself, who will?
Back in 2016, my husband collapsed on the floor. Because we knew his own history as well as his family history, because he had been going to the doctor regularly, they were able to save his life.
There were critical decisions that we needed to make in the moment — decisions that we did make, because we knew what we needed to know.
So, yes, it’s important to know all these important things, because by knowing them, you are prepared.
Take stock of the resources at your disposal
And it doesn’t take a whole lot of money to be ready. Even if you don’t have the financial resources, there is Medicaid, which is so robust that that you can get checked out and it does not cost you anything.
I’ve helped educate health care providers and community members on things like preventative care screenings and Medicaid itself. And the number one thing that breaks my heart is not knowing what resources are available to help you or your loved ones.
There are so many things that the system across the country can offer. For instance, there are so many resources here in North Carolina. North Carolina has a robust Medicaid system. I mean, you can get transportation to doctor’s appointments.
You can get financial help with housing. You can get food boxes. We no longer have to go hungry. We no longer have to make do without utilities.
So what breaks my heart is people suffering and not knowing that there is a way out.
There are a lot of resources at our fingertips and at our disposal. Make sure you know what these resources are.
Special thanks again to Abbvie, Genmab, and Karyopharm for their support of our patient education program! The Patient Story retains full editorial control over all content.
The Importance of Cancer Screening | Pastor Steven Hargrove
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
Pastor Steven Hargrove shares the profound impact cancer has had on his family and community, and underscores the importance of cancer screening, as well as the role an institution such as the church can and should play when it comes to healthcare.
Steven grew up in North Carolina and serves as a pastor at White Rock Missionary Baptist Church. Steven has not experienced cancer himself, but has witnessed the disease ravage his family. His mother died of breast cancer, and several relatives have battled other forms of cancer, including his niece Marisha, who lived 7 years with stage 4 renal cell carcinoma after initially being given 6 months to live.
Steven emphasizes the importance of having adequate healthcare. Marisha’s struggle to afford her monthly medication taught him the necessity of advocating for healthcare coverage. Medicaid eventually covered her medication, highlighting the need for awareness about available healthcare options.
In his church, Steven promotes health awareness, particularly during Breast Cancer Awareness Month. His personal experiences drive his commitment to encouraging cancer screening and preventive measures. He also advocates for hospice care, challenging misconceptions that it solely foreshadows imminent death.
Steven leverages his pastoral role to offer advice and support to his congregation, emphasizing the necessity of spiritual faith combined with proactive healthcare. He encourages participation in clinical trials, sharing that such trials extended Marisha’s life significantly. He believes churches should provide a holistic approach to wellness, integrating health education with spiritual guidance.
Steven’s story underlines the importance of community, faith, and resilience in confronting life’s challenges, advocating for informed decision-making and mutual support within families and communities.
Thank you to Abbvie, Genmab, and Karyopharm for their support of 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.
… I believe that in this life, we just have to learn that we’re going to face some trials.
But we don’t have to face them alone.
Introduction
I am Steven, and I am from Oxford, NC, originally by way of the Bullock community. I currently live in Henderson, North Carolina.
I’m the pastor of the White Rock Missionary Baptist Church located in Greenville County. I took my undergrad and master’s at North Carolina Central University.
I’m a professor here at NC State University teaching in the social work program. I taught at Vance-Granville Community College prior to teaching at NC State U. I also am a 20 year vet.
I’m married to the lovely Leslie, and we have three adult children and seven grandchildren. And a dog we call Roger.
Family history of cancer
I myself have never had cancer. But my family has a long history of cancer.
My biological mother died from breast cancer when I was five years old. She had a sister who also died from breast cancer. She has nieces that have had breast cancer, but they survived. Right now, my brother and my aunt both have multiple myeloma.
We helped raise my sister’s daughters, Mia and Marisha, when their mom died of renal cell carcinoma. Unfortunately they have both passed away as well. Mia passed in 2019 and Marisha in 2020.
Marisha’s story
Marisha was diagnosed at 23 years old with stage 4 renal cell carcinoma. So there were things about my sister’s journey that I started seeing with Marisha.
I noticed the drastic weight loss. Within 2 months, she went from about a size 20 to a size 12 or 10. We were very concerned. We also realized that she had a knot in her neck, and then her skin had kind of changed.
So that’s when we had her go to the doctor and they immediately said it was some type of cancer. They just didn’t know what type at that point. And so from there the journey began.
Marisha was in a battle for her life. Initially, they gave her 6 months to live, and I pulled out all the stops. I was prepared to do anything to save her life.
So at that time, Marisha did not have health care coverage because she wasn’t working. So we did everything we could to get her what she needed, and we went to every pharmaceutical company. But the trial medication that she needed costs $13,000 a month.
Through prayer and connections and the doctors fighting on our behalf, Medicaid ended up paying for her medication. So it helped me realize that people really, really need to pay attention to their health care and overall health. You know, what kind of plans they have, what it pays for, what it doesn’t pay for.
Marisha also participated in a clinical trial, and it really helped her. Had it not been for the clinical trial, she would have been gone in 6 months. But she lived 7 years — 7 good years. And not in a bed like she was in a nursing facility.
Towards the end, Marisha started deteriorating. Maybe in the latter part of the summer, her blood pressure kept bottoming out, and then we found out that the medicine now was working against her health. So October the 3rd, which was her birthday, was the day they told me that they could not do anything else for her.
And that’s when the doctor said that the medicine was working against Marisha. And we couldn’t be mad about that because the medicine had worked so long and had done so well for her. And at that point, they had several other clinical trials lined up. But because her health had deteriorated, any other trial they did would just work against her because her physical health was just too low.
So when Marisha did pass away, it wasn’t because of the cancer. It was because her blood pressure couldn’t come up.
But we were thankful for the clinical trials. Because Marisha already had a child when she was diagnosed with cancer. Her baby was just 1 year old at the time. Through those clinical trials and other things, God allowed her to live 7 years, so that her son would know who his mama was.
Prayer works.
But, you know, we also have to remember that God works in all kinds of ways and not just one particular way.
Leveraging his experience to help others through church
I have tried to make good use of what I’ve experienced and learned to help others, including through church. And I’ve learned a lot of things as well.
Learning about hospice care
At church we come across a lot of different things, because you get a collage of people coming from all walks of life.
One of my ministers was diagnosed with aggressive dementia. And her husband was limited educationally. So he relied heavily on me to help him get things in place for her.
I found that when we were dealing with their insurance, we had to pull in other methods to take care of her needs, because her needs were getting greater as the dementia progressed. And so we ended up having to go to the senior center and get help and direction as to what we needed to do next.
We realized in that process, a lot of people are like, when they hear hospice, their reaction is, oh my God, somebody’s dying. But hospice also helps if you have a disorder or a disease that’s terminal. It doesn’t mean you’re going to die tomorrow, but they will send somebody into the home. They can help with bathing and dressing, checking blood pressure, and different things like that.
If you don’t have Medicaid, you can’t get an in-home aide. But hospice now has an extension where you can get somebody to come in maybe a few hours a week and do different things. They can check blood pressure and blood sugar, and try to make sure that person is taken care of. So we had to put those things in place.
As a pastor, I find often that when my members come up short, they’re going to come to me because, well, I’m their pastor.
Using his experience as a testimony and to offer advice
I do offer advice rooted in my own and my family’s experience to date. And a lot of it happens because most of my church members know my experiences and what my family and I have dealt with.
I’ve gotten asked, pastor, what do you think I should do? And that happens all the time because they value the input of their pastor. And I give them what I’ve got.
You know, prayer works. But, you know, we also have to remember that God works in all kinds of ways and not just one particular way.
My experience has touched others and convinced them to go out and get themselves screened. And as a matter of fact, we pushed for that in our church. Like I said earlier, this is Breast Cancer Awareness Month. So we’re pushing that.
Starting the first Sunday of the month when people come to church, they’re going to get my soapbox on breast cancer awareness. As you know, breast cancer awareness is personal for me. So I share that story with my church members so that they will go and get checked, and we have a health care ministry that helps us promote that.
So whatever is going on, our health care ministry is there to provide whatever information that we need, like we did during the times when COVID was bad. We had readily accessible information to share not only with our church members but also with the community at large.
We don’t just exist for our church, we exist for whosoever needs us. It’s a let-them-come kind of situation.
The church… is an institution.
And we need to make sure we use that institution so people can grow.
The impact on cancer screening from having a health care ministry in his church
I’ve found that maintaining a health care ministry is so crucial, because you will be surprised at who’s sitting in your congregation that doesn’t have a clue as to what’s out there that can help them.
Prevention is a major part of making sure our health is good. Because if you can catch something early, you know, sometimes people may say, oh — okay, that’s a sign. I need to go get this checked.
In our church when COVID and all that stuff was going on, we connected with other churches with by way of our healthcare ministry and encouraged them to have health care ministries too, through which they could collaborate and work towards helping their community.
Our health care ministry keeps track of health care for everyone and makes sure that everyone is aware of the cancer screening, aware of the tests that can be done, all of that stuff. So our health care ministry is definitely on top of that.
Helping the community get the best health care possible
It’s important for the church to understand that it’s not just there to preach the gospel. It also functions to give information.
We need to make sure that people are getting the information they need, because if you’re sick and you can’t come and work in ministry or help with ministry, we want to make sure that you have the information readily accessible to you.
The church, I said earlier, is an institution. And we need to make sure we use that institution so people can grow.
People can be the best version of them that they can be. And to support them, the church is like this all encompassing arena.
You know, it’s every aspect of a person’s life. So it’s not just about the old people and or just about the young people. It’s not just about the men or just about the women. It’s about the whole picture.
I believe church should be like a pie. It has a whole lot of slices, but at the end of the day, it’s a pie and we address every area of a person’s life. So health care and being getting screened and tested and all those kinds of things, that’s a slice of the pie .We are trying to make people as whole as possible.
On God and suffering
How do I respond when people ask the question: why does God allow us to suffer?
Well, the Bible says that God rains on the just as well as the unjust. So nothing exempts any of us from anything. I think people want a perfect world, but we don’t live in a perfect world.
Jesus did say, in this life you will have tribulation. He says, but be of good cheer, for I have overcome the world.
We didn’t come here to stay, so something’s going to take us out of here.
I say to people, everybody dies from a heart attack. So everybody starts laughing. Like, what do you mean about that heart attack? I explain, as long as your heart is working, you’re living. But when your heart stops working, you die.
So everybody dies from a heart issue, is what I tell them. But I also want people to understand that you’re going to deal with some things in this life.
Okay, so people look at my family and say, well, how in the world did y’all make it through that? Because I realized that I belong to God, they belong to God.
It doesn’t take away from the pain. We were hurting. I thought I was going to lose my mind. I cried and I cried, and we still cry. But we have hope. And our hope is that God is going to get us through anything that we come in contact with.
So life is going to happen. Everybody wants to be rich. Everybody wants to be well. Everybody wants to be a whole lot of stuff. But that’s not the way of life. And even rich people don’t always have things their way. Look at those people who we all think have it all. But then look at what they’re missing.
So I believe that in this life, we just have to learn that we’re going to face some trials, but we don’t have to face them alone.
When people ask, why did God allow this to happen? I answer, well, God trusted you with it because he felt like you would be able to trust him enough to get you through it.
I saw this lady on Facebook who lost her son, mom and dad in a flood. She was interviewed on TV. She cried but said, I ain’t mad with God. I’m not saying I’m not hurt. I’m not saying that I’m not broken. I’m not mad because I know that God took them, and they are now with him.
You should understand that a lot of those kinds of comments that question why God allows us to suffer, they’re not really coming from people who really understand church and God. You know, they’re looking for somebody to blame instead of just accepting it as part of life. And we just have to be ready for whatever it is.
I didn’t want to go through losing what I’ve lost. It almost killed me. But I never charged God, I trusted him. Now that’s not just the pastor thing, but it’s the Christian thing, the God that’s in me. And that’s what I believe.
I got through my losses because I know that God is my refuge and my strength. He’s a very present help in the time of trouble. So when you start understanding the nature of God, that’s when you stop questioning, why is God doing this now?
And I did come to understand several things. That it has nothing to do with me directly and that this is His will for life. No one is going to live to be 150 years old. If that were the case, then nobody would ever leave this world.
I trust God, and this is what He revealed to me. He says, I am near to the brokenhearted. He said, you are brokenhearted. So guess where I am? And I let it go, because then I knew He was walking right there with me. And I’m telling you, I could not have made it this far had it not been for my trust in God. There is no way.
I testify about what God showed us and what he taught us when Marisha was sick. As I said earlier, we didn’t have the money for her treatments. We didn’t have $13,000 a month. But guess what? Things looked up one day. UPS was bringing her medication to the door. We didn’t even have to go pick it up ourselves.
And had Mia and Marisha died during COVID, we wouldn’t have been able to give them a proper burial and wouldn’t have gotten any closure. We did manage to do so. So we look at the blessing in it and not the curse. Not necessarily how bad something is, but how good God is in that situation.
We thank God because we were able to celebrate their lives and bury them like we wanted to. If we hadn’t managed to do that, it would have driven us crazy. But I was able to do bury them nicely and celebrate them, thanks to God who gave us the opportunity, and we really thank Him for it in the midst of what we were going through.
And I pray for people who don’t get to do the same for their loved ones who pass away.
If there’s something out there that can help you, I recommend that you go for it.
Advice Steven wants to share
Get the cancer screening and the health care you need
Marisha was very sick initially. She got better. And then at the end, of course, she passed away. But it taught us that we’ve really got to pay attention to health care and talk to people about the need for proper screenings and health care. They don’t ever know what kind of situation is going to present itself.
Now we all had health care. My family members that we worked and we all had health care, but because of her situation, she didn’t. And it wouldn’t pay for her medication initially, but we had to fight for it.
And since then, Medicaid has been expanded. So that is I’m sure that’s going to be a help to the community as well.
When we were growing up, my dad’s insurance covered us well. I know other people grew up without insurance, couldn’t go to the doctor when they needed to. Well, my dad’s insurance made sure we had a totally different experience. His insurance required us to go to certain dental appointments, that we had to have certain physicals once a year and all of that in order for his insurance to pay for other things that would come along.
So we didn’t have that challenge that a lot of people have.
Be an advocate for others
You would be surprised at the people who don’t know how to speak up for themselves.
I’m a talker and I don’t mind saying what I need to say, like I’m doing right now.
For instance, as I mentioned earlier, my brother and my aunt both have multiple myeloma, and I go with them to their doctor’s appointments and I talk to doctors.
So it is important, especially with the elderly community, that they have someone speaking for them. Take my dad, for instance. He’s 84 years old, and when he goes to his appointments, sometimes he’ll just say, tell them, children, because he doesn’t know how to interpret what the doctors are saying.
So then in turn, I’ll interpret to him what the doctors are saying, and then he’ll be like, oh, okay. And so collectively, we’ll make a decision on how they should proceed with whatever situation it is.
I’m telling you, it is so important to have someone fighting for you, because if you’re in a situation like with cancer or something like that, you may not feel up to talking to doctors and dealing with certain things.
And so you need people that can talk on your behalf, or who have resources to connect you to others who can.
In my church, I’m the pastor, of course, but sometimes I’m the advocate. I try to make sure that my people’s needs are met.
Be open to different treatment options
Lastly, if there’s something out there that can help you, I recommend that you go for it.
Let me talk a bit about clinical trials. I think a lot of times people are afraid of clinical trials because in the Black community especially, the first thing they say is they’re not going to be poking me and sticking things in me. And they do have that kind of idea that this is how clinical trials are.
I became the pastor of White Rock in July 2007. Three weeks into me being pastor, the chairman of my trustee board came to me and said, they’ve tested me for colon cancer, and they’re going to give me the results on such and such a date.
So I showed up for his appointment. He didn’t know I was going to be there. And we prayed and talked, and then he went back, he and his wife. And when he came back out, they had this funny look on their faces. And he said, well, pastor, I do have colon cancer and it has spread. Now we have to decide what it is that we want to do. So the doctors gave him options, but surgery was not one of them because of the metastasizing of the cancer.
So I was also with him when they asked him about different kinds of treatments and options that they had and they were offering. And, you know, sometimes when people hear the term “clinical trials”, they think that they’ll be experimented on and that the doct0rs don’t actually know if treatments are going to work.
He was a tough guy. So I had to really talk to get him to really do some things that he didn’t really want to do. And so needless to say, we walked the journey. He had a lot of good days, but he had a lot of bad days. And 3 years later he passed away. But it could have been a lot worse had he not done the trial.
And if you remember what I shared about my niece earlier, thanks to the clinical trial she underwent, she lived 7 good years—without being confined to a hospital bed or nursing facility or something. Were it not for the clinical trial, she would have been gone in 6 months. But she lived 7 good years and got to know her son too.
The culture component is vital to our understanding of why people won’t go see doctors or why people won’t join clinical trials or those kinds of things.
The Bible says that my people perish for a lack of knowledge. So sometimes people perish because they don’t have an understanding of things. And it’s trials and other things like these that help people to understand.
Special thanks again to Abbvie, Genmab, and Karyopharm for their support of our patient education program! The Patient Story retains full editorial control over all content.
Thank you for sharing your story, Pastor Hargrove!
Symptoms: None; found the cancers during CAT scans for internal bleeding due to ulcers Treatments: Chemotherapy (capecitabine + temozolomide), surgery (distal pancreatectomy, to be scheduled) ...
Cancer details: Also known as urothelial (invasive), 5-10% of kidney cancers 1st Symptoms: Blood in urine Treatment: Nephrectomy (surgical removal of kidney and ureter) ...
Symptoms: Persistent left flank pain, backache, fatigue, weight loss, traces of blood in urine, fluid in left kidney Treatment: Chemotherapy (gemcitabine & carboplatin) ...
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Paula initially experienced painful gas, irregular bowel movements, and eventually blood in her stool. She was often dismissed by doctors who attributed her symptoms to stomach flu, hemorrhoids, or irritable bowel syndrome. As her condition worsened, she became anemic and experienced severe pain, weight loss, and fainting spells.
After years of being misdiagnosed, Paula was finally diagnosed with colorectal cancer in 2014 after a series of urgent care visits and a failed colonoscopy. The tumor had been encapsulated in her colon and despite initial fears, it had not spread to other organs or lymph nodes.
Paula underwent emergency surgery to remove the tumor. Although doctors anticipated the need for chemotherapy or radiation, they were able to successfully remove the tumor and 34 lymph nodes. Paula’s cancer was found to be stage 3, but it had not spread to her lymph nodes.
Throughout her journey, Paula faced multiple challenges, including medical bias due to her race and sexual orientation. She experienced homophobia, racism, and misogyny, which contributed to delays in her diagnosis and treatment. Despite these challenges, she found strength in her community and in sharing her story.
Paula emphasizes the importance of early screening, particularly for those with a family history of colorectal cancer and for marginalized communities. She advocates for self-advocacy in healthcare, urging others to push for fair and humane treatment. Paula believes in the power of survival and thriving with cancer, encouraging others to know their family history, get screened, and not be afraid of a cancer diagnosis. She stresses the importance of treating everyone with dignity and respect in healthcare and encourages individuals to take control of their health.
Thank you to Johnson & Johnson for its support of 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.
I had all the signs and symptoms that they tell you to look out for when it comes to colorectal cancer, but at the time, I didn’t know what they were.
Introduction
I’m in love with my best friend and partner, Lara. We have been together for 38 years and married for 10 years. I’m a cat mom to a little cat named Trixie.
I enjoy dancing and singing. I’m a Duran Duran fan and that’s how I met my wife. For our 38th anniversary, we went to their 40-year celebration in Birmingham, England.
I’m also a great cook and I have a collection of amazing cookbooks. I’m trying to make my way to some of the best restaurants in the world.
Pre-diagnosis
Initial Symptoms
I had all the signs and symptoms that they tell you to look out for when it comes to colorectal cancer, but at the time, I didn’t know what they were.
In the early days, I always had painful gas and weird poop. When I experienced them, I would automatically blame what I ate and drank, so I would dismiss them a lot of times.
But then I started to have more painful symptoms, especially with the gas. I told my wife that I felt like I had gas going up and it was getting trapped. There were times when it hurt so bad that I wanted to scream.
I started seeing more blood. I went to see a doctor who said I probably had hemorrhoids.
PCP Appointment
I started going to the doctor by the end of 2012. I went to my primary care physician, but he didn’t think much of it at the time. When the pain was bad, I would get told that I probably had stomach flu.
Symptoms Worsen
I started to see signs of blood in late 2013. Sometimes I would be straining to poop. Other times, I would have diarrhea. I didn’t have my regular PCP at the time, so I would see whoever was available and they told me to change my diet. When I told one doctor that I saw some blood, he thought I might have stomach flu, so he gave me antibiotics.
By 2014, I started seeing more blood. I went to see a doctor who said I probably had hemorrhoids, so whenever I saw blood, I assumed it was that. I also started having bad pain and being anemic, but I didn’t know it then. I was cold all the time.
Being Dismissed
They said things that a lot of people under the age of 50 would be told because they were too young. “You probably have IBS.” “It’s probably hemorrhoids.” “You just have gas.” “I’m sure it’s nothing. You’re too young.” I heard a lot of that over the year.
By the time 2014 came around, I had been on antibiotics for nine months from different doctors I had seen since 2013.
There were times when the pain would be worse and I would have to go to urgent care. I went at least six times. The first few times, they would say I had gastritis or something stomach-related and send me home with antibiotics and painkillers. The last few times, I was bent over and freezing because I was anemic. I started to lose weight and ended up losing 45 lbs.
I have experienced a lot of bias and straight-up racism with medical care.
The doctor came into the room and before he even said his name or mine, he said, “I don’t give drugs in this room.” My wife took the doctor out and started yelling at him in the hallway while I sat there, thinking, Don’t yell. They will not help me if you yell.
I have experienced a lot of bias and straight-up racism with medical care. In 2014, I had doctors ask, “Did you tell me you were gay? Listen, it doesn’t matter what’s wrong with you because you’re going to hell.”
Losing Her Job
I got a job that year, but I was having such a hard time because I couldn’t keep up. Then I started to see my hands turn white and thought I was working too hard and planning for our wedding was too much. But the doctors kept telling me that I was okay.
I started getting depressed because I didn’t feel good. I felt that I wasn’t pulling my weight or helping my wife like I should. I was telling people I couldn’t do things, but the doctor said I was okay so it was starting to mess with my head. I didn’t want to tell people when it was bad, so I was hiding it, which made it worse.
I ended up losing my job because I kept calling in sick.
I was so sick and dizzy that I could barely see and stand up.
Diagnosis
Turning Point
The day after we got married, we went to a Broadway play, but while we were there, I felt terrible. My colon was becoming completely blocked and I was starting to have serious complications. By the time the play was over, I was so sick and dizzy that I could barely see and stand up. I was shaking, my body was red, and my skin was hot.
When we got back to my best friend’s house, I ran past the door and barely made it to the bathroom. I had the most humiliating accident. I was lying on his bathroom floor and knew that this was bad. I knew something was wrong.
Around January, I started to have fainting spells. I went to an urgent care on a Thursday and said, “Ma’am, I don’t care what you say. Nothing is coming out of me but blood. Nothing!” The person behind the counter got a nurse, who came out and said, “I’ve seen some of your records. Has anybody given you a FIT test?”
I didn’t know what a FIT test was. She was a bit worried. She said, “You probably ate something red, but I’m going to give you this test. Unfortunately, we don’t have a lab here, so I will not have the results until next week.”
I was in agony and stayed in bed all weekend. I was going back and forth to the bathroom and blacking out. I called my wife and we went back to the ER. This time, I must have looked bad enough because they kept me. I still had a 13-hour wait, but they said, “Get her a room. Get some scans. We’re going to do a colonoscopy.”
I don’t remember much after that. I was so sick that they started to medicate me and put me out. When I woke up the next morning, it was time for rounds and the doctors were going to come and talk to me. They did scans, blood work, EKGs, and all these tests, and they tried to do a colonoscopy.
They tried doing a colonoscopy, but they couldn’t get through.
Getting the Official Diagnosis
Around eight doctors came in. My heart started pounding. One doctor said they tried doing a colonoscopy, but they couldn’t get through. I didn’t know what to say after. It was a devastating way to find out I had colorectal cancer.
Reaction to the Diagnosis
What did that man say to me? What did those people tell me? Why did all those people ignore me? How long does this cancer take to grow? Black people have a higher risk of this? I was pissed and it was messing with me as much as the cancer was messing with me. I was mad and when I’m mad, I keep it in because I don’t want to hurt other people. Doubt, depression, and misery set in, and I needed to find a way to turn it around.
Treatment
Surgery to Remove the Tumor
They said, “We’re going to do emergency surgery. Based on what we see, it looks bad. We believe the tumor has broken outside of the colon wall. It might have some interference with your liverand other organs. We’re not sure what we’re going to find. We’re possibly going to do radiation and chemo because it looks massive. We might have to shrink it first or we might have to go in, do surgery, clean it up, and fix what we can. We need to decide. We’re going to keep you here because you are completely dehydrated.” I was skin and bones, and an absolute mess.
The tumor board said it looked bad, so we weren’t going to do chemotherapy or radiation, but we were going to do surgery. They brought me back to the hospital and prepped me for surgery. I was there for about four days prior and then a week and a half after.
The tumor was encapsulated in the colon and has not broken outside of the colon wall.
I went in early morning to prep and they told us that surgery would take 12 to 14 hours. They said, “We believe you are stage 3. When we go in, we might have to take out your uterus. We will take out whatever the tumor has affected. We will take out part or most of your colon. You will probably have a permanent ostomy. We may have to take out part of your liver. If it has gone deeper into the stomach, we will decide from there. We will do what we must do and that’s all we can tell you right now.”
When I woke up, the nurses came over and said, “Ms. Chambers, your doctor will explain everything.” He came in and said, “When we got in, it wasn’t what we thought.” Lara said the doctors came to her about four hours into surgery. They found that the tumor was encapsulated in the colon and has not broken outside of the colon wall. My body was completely swollen. I was blocked. They took out 34 lymph nodes. The whole surgery took 5 ½ hours. When they got the pathology back, there was no cancer in any of the lymph nodes.
Genetic Testing & Family History
Once my doctors knew that I had colorectal cancer, they did all the right things. They asked all the questions, especially my family history. They asked me repeatedly.
I decided to stay at the county hospital because they saved my life. I found my team, so I continued my care with the oncology and GI staff. In conjunction with UTHealth, they were able to offer genetic testing, which I qualified for and was able to do through my wife’s insurance. They suggested that because they think I have a genetic component. They tested me for Lynch, but it was negative.
That same year, my father-in-law and I did a DNA test and the results said I had another brother. A cousin contacted me and we talked about what was going on and I found out about David. He allowed me to share part of his story. He is an ostomate and was diagnosed with stage 3 colorectal cancer two years before me. He didn’t know about our family because he was adopted when he was a kid. We then found out that there’s a family history of not only colorectal cancer but GI cancers, and it runs deep in the family.
Look at your own biases. Think about when you are at the doctor yourself and how you would like to be treated. Keep it professional but bring in that real spirit of caring.
Experiencing Bias
I experienced homophobia, racial bias, bigotry, and a lot of misogyny, which I think went into some of my diagnoses. A couple of people told me I was hysterical and that it was in my head. It was so freeing to tell my story for the first time. It brought people into my life who had a similar story.
Meeting them and finding that community made me realize that it wasn’t just me and that I wasn’t too young. It wasn’t because I was Black. It wasn’t any one of these things. There’s a way that we look at cancer and at diagnosis, treatment, and preventative medicine that needs to be changed. I had whole conversations about this cancer that has stigmas around it that I did not even know I was supposed to be ashamed of.
I’m a nine-year survivor and in those nine years, I’ve seen things change. Things take time. It’s like pulling a bandage off a wound and having the wound heal. We have to treat it and give it light. We have to uncover some of the issues with which we are dealing. Because we all have our own biases, it’s important for anybody in the healthcare field, especially here in the United States, to look at things within us that we need to look at.
Innately, I think most people who go into healthcare do it because they want to. It’s their calling. It’s also their decision to be in healthcare, a space where they care for people who show up in their rawest moments. It’s important to have grace and a little bit of humility. If someone’s coming to you, they’re putting their trust in you.
Treat people with respect and dignity. Ask them, “Who are you? What happened to you? How did you get here? How can I help you? How did you get to me? Thank you for coming here.” Listen to them and meet people where they are.
The calling in healthcare is not for everyone. We still have laws, rules, and regulations, and we are to treat everyone with dignity and respect. Look at your own biases. Think about when you are at the doctor yourself and how you would like to be treated. Keep it professional but bring in that real spirit of caring.
I want people to not be afraid to go to the doctor. I don’t want what happened to me to happen to anybody.
People need to get screened, especially those in the Black and LGBTQIA+ community. You need to feel comfortable and know that there are more and more places with affirming care and who show it. They want you to know that you are welcome. Look for the rainbows.
Let us know that we are welcome. Ask me what my pronoun is. Is that my partner or my wife? Do not assume. Ask us what we need and be in partnership with us.
I want people to not be afraid to go to the doctor. I don’t want what happened to me to happen to anybody. Know your family history. A lot of gay kids are kicked out of the house when they are young, but a lot of them stay in touch with their family members.
Words of Advice
We need to get screened for colorectal cancer. The screening age now is 45, but if you have a family history of colorectal cancer like me, especially if you have beautiful melanated skin, you want to make sure that you’re talking to your doctors early.
Cancer affects the family and not just the individual. If there’s cancer in the family, it needs to be openly discussed. We need to be tested. We need to know our family history.
Nobody is going to care for you the way you do. Always put yourself first.
Cancer is a scary word, but it’s a word. People survive, thrive, and live with cancer. We’re called survivors from the day that we are diagnosed, so from that day, I had a choice. Am I going to live with this or am I going to let it take me? I needed to find a way to live with it and I did.
But I didn’t want to just live—I wanted to thrive. If cancer’s something that you’re afraid of and it’s the reason you’re not getting screened, you’re doing yourself a disservice.
Advocate for yourself. You have the right to advocate for fair treatment and humane treatment. Nobody is going to care for you the way you do. Always put yourself first. Put the mask on first and take care of yourself first. Nothing can be healthy and whole until you are healthy and whole. If you’re not comfortable, say so.
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