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: Chris Sanchez
Francina is a breast cancer survivor, a mother of 2, and a grandmother of 4. She enjoys traveling, going on cruises, and spending time with family and friends. Francina is an advocate for cancer awareness, working with the American Cancer Society Cancer Action Network and the Sister to Sister Alliance to educate communities on cancer prevention and the importance of early detection.
Francina discovered her breast cancer during a routine mammogram. After further tests, she was informed that the mass was cancerous. Despite the shock, she remained calm and turned to her faith, vowing to use her journey to bring glory to God. Her treatment journey included two surgeries, chemotherapy, and radiation, and thanks to biomarker testing, she received a treatment tailored to her specific cancer type. After going through these challenges, she is now cancer-free, and has been so for 6 and a half years.
Throughout her journey, Francina relied on her faith, support from family, and her church community. She credits her strength and positive mindset for helping her fight cancer, as well as the help of a close friend who accompanied her through treatment and recovery. She emphasizes the importance of self-breast exams, early detection, and knowing one’s family medical history.
Name: Francina B.
Diagnosis:
Breast Cancer
Staging:
Stage 2B
Initial Symptoms:
None
Treatments:
Surgery: lumpectomy; removal of cancerous sentinel nodes
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.
You know, God has given me another chance and the opportunities afforded me not only enable me to use my voice, but also to enjoy life.
And that’s exactly what I’m doing.
Introduction
My name is Francina. I’m a breast cancer survivor. I am a mother of two, a daughter and a son and a Nana of 4. 2 boys and 2 girls. I am one who loves to travel. I love going on cruises. And I also love spending time with my family and friends.
I’m enjoying life. You know, God has given me another chance and the opportunities afforded me enable me not only to use my voice, but also to enjoy life. And that’s exactly what I’m doing.
Pre-diagnosis
Initial Symptoms
Well, I didn’t experience any symptoms. It was my annual routine mammogram, and maybe about a few days, maybe a week later, I got a phone call from my doctor.
They needed to do another mammogram and also ultrasound because they had seen a mass.
They wasn’t really sure what it was, but they were concerned.
Diagnosis
So I went and I got my mammogram done. I got my ultrasound done, and I was on my way to the gym.
As soon as I get to the gym, I get a phone call from my doctor that the mass was cancerous.
And she said, I’m going to set you up with other doctors, you pick what you want and go from there.
… you don’t hear everything that’s being said because you’re still trying to figure out them 3 words. “I have cancer.”
Reaction to the Diagnosis
And so I’m sitting in my car and so I call my pastor and I call her aunt.
And after that I said, you know what, God? Because I never questioned Him. I never asked Him why. I said, If I’m going to carry this, it’s going to be to Your glory.
I said, I’m not going to call my children yet because I know they’re going to have many questions. So let me go, wait and see and talk to my doctor, you know, get information so that I can share with them.
My concern was having to go home and tell my husband. So I went into the gym and I worked out. I went home and my husband was in the bedroom, and I went and told him, and immediately it was negativity. You know, you go there thinking the worst. And so I had to throw my hand up and said, I don’t receive that. And I walked out the room. And so it was a process.
I had a friend that I went to talk to. I used to take care of her son for 2 and a half years, and he had passed away. So I went to her, you know, and let her know what was going on. And she’s a godsend.
I thought that her son was my reason. No, it was her because she went with me through my whole cancer journey from day 1: treatments, surgery, changing my bandages. I mean, the whole bit. And even took notes that I didn’t even know she had taken.
Because, you know, when you go to see your doctor and they tell you that you have cancer, you know, your mind is all over the place. And you don’t hear everything that’s being said because you’re still trying to figure out them 3 words: I have cancer.
Treatment
Options
So my surgeon was very compassionate. He explained everything to me until I understood. He gave me options.
Then he said, you go home and you pray about it, and you come back and let me know what your decision is.
And in the process of having the lumpectomy done they found in my sentinel nodes that I had 3 cancerous cells. That means it was outside of the mass.
And so 2 weeks later, I had to have another surgery where they had to go into my armpit. And you have 3 tiers where they took out 2 tiers of cancers.
And it was clear. Clear margin. So the cancer had not spread. So that was a blessing.
So then I had to have a biopsy done so they would know what type of cancer I had.
Chemotherapy and radiation
So in the process of finding out what type of cancer I had, I was able to get a treatment that was tailor-made for my specific cancer. So I had the first round.
I had 4 rounds of chemo every 2 weeks, and then I had to have 12 rounds of another chemo.
The first chemo was doxorubicin, what we call Red Devil. That’s really a powerful, potent treatment.
And then I had paclitaxel, which was for 3 months.
After that, I had either 32 or 33 rounds of radiation.
And from there I was cancer-free. That was 6 and a half years ago.
Being Cancer-Free
And it was due to biomarker testing that at the time I did not know I had it done. I just found out the early part of this year. And it was that that contributed to the type of treatment that I needed for my specific cancer, which worked.
And like I said, to God be all the glory because I am cancer-free. I am healed.
And the moment when the doctor pulled me in and said, hey, your scans are clear. Oh, I mean, I was ecstatic, but I already knew because I had a conversation with God, you know, and he gave me 3 words as well. And his 3 words was: I got you. And when God said he got you, he got you.
So I never was stressed or worried about my cancer journey at all.
“I had people”
You know, everybody says something different, but it was just the stress mentally, you know, physically and emotionally of going through and the challenges that I had because of it.
I had to stop working, I was no longer able to work. And so in the process, I exhausted my savings. And so I had no health, no health care.
And so I applied for assistance, but I didn’t qualify, and I had no income.
But I had people.
My social worker was awesome. And she connected me to organizations as well as my niece, because I had a sister that passed away from breast cancer in 2015. So she wasn’t as fortunate.
So I used my voice on behalf of her as well as those that are next to me, but also coming behind me.
Advice Francina Wants to Share
Get tested
So based on my experience, I now advocate testing.
You know, we have to advocate. We have to stop being silent, being quiet, and to let people know cancer does not have to be a death sentence.
Early detection is key. And so, you know, you want to make a point of people to go ahead and get their screenings done. And those that are not old enough to have mammograms to do self-breast exams monthly.
So I’m about educating and giving information, you know, sharing my story, my journey so that I can help others along the way.
And my advocacy has also extended to me urging my daughter to get tested too. And she does get tested, every 6 months. And I also have a sister on my father’s side who also gets tested.
My niece also gets tested because it was her mother that passed away, and I’m her aunt. So, you know, you got to look at that connection. So they all are proactive in getting their screenings. They get MRIs and do self-breast exams as well. I have 2 granddaughters I’m trying to teach about doing self-breast checks.
When we go to health fairs, there are a lot of young adults that are not old enough to get mammograms, don’t know how to do self-breast exams, don’t even know about it. So I’ve asked them, you know, when you go get your physicals, do you talk to your physician? They say, no.
I said, when you go, you ask them to not only perform it, but to show you how to do it yourself, because a lot of times people find those lumps themselves. Also, they’ll be the first to see a change in their body.
So they need to know what to look for. So we like to educate and give information so they are aware.
Link with support groups
Connecting with support groups helped, surrounding myself with positive people. And also learning from them about people who beat cancer. Not just seeing the success, but gathering information from them.
But it was also inspiring to see patients who are now 5 years, 10 years, 20 years cancer free. You know, that was the stuff that gave me something to push forward to.
That can help you through your journey, because there are a lot of people that have already been through what we’re going through so they can help us.
You know, they can be an encouragement and inspiration to us and also be there to support us.
Cancer doesn’t have me.
I’m going to be in control.
It’s not going to take me.
Develop a positive mindset
And also having a positive mindset was so important.
Cancer doesn’t have me. I’m going to be in control. It’s not going to take me.
I’m going to enjoy my life, you know, and do some of the things that maybe I wouldn’t have normally do.
But, you know, just to be an inspiration and encouragement to other people that listen, you can fight this, you can beat this, you can overcome this. You can still have quality of life.
Put your mind to do the things that you want to do, and surround yourself with positive people. Get connected to support groups.
Lean on family and friends
It was so amazing to be supported by my church family, their prayers, having them rally around you and cheer you on.
Plus the support from my family was so heartening. Because when I did finally tell my children, my daughter looked at me. Mom, she said, you know, you’re a strong woman, you’re going to beat this.
My son wanted to run and come to his mama. You know, but they all know that their mama is a fighter.
I’m not one to give up. I’m not one to quit. So I’m going to push. I’m going to press.
But my daughter, every time I look around, she was leaving Maryland, coming to see about her mama. If I didn’t sound right on the phone, she was there.
So, like I said, my family means a lot, because they see me doing my journey. But it also helps them too, as we’re creating memories and also leaving legacies that they can follow and continue with.
Be aware of any family history
Another key thing that I tell people is, know your family history.
See, when I was growing up you didn’t ask questions as a child. So now all your matriarchs and the patriarchs are no longer here.
You know, you don’t have the information. So it has to start from me with educating my children and my grandkids.
And I’m seeing me when I’m going through and understanding what I do and why I do it.
So with their support and the support of my friends, you know, I’m I believe I’m making a difference.
Learn about biomarkers and why they matter
I also wanted to talk a little bit about biomarkers and their importance. Basically, they get a sample from your tumor and they test it, you know, and then and it determines the type of cancer that you have.
Well, I’m still learning about biomarker testing, but what it did for me was it was able to target the type of cancer that I had. So a lot of people are not aware that they’ve had it done because, you know, you didn’t hear of it. Even my doctors, they didn’t tell me anything about biomarker testing.
It was my advocacy group that was discussing it because it’s something that we’re trying to get out there trying to talk with our lawmakers. Making that a policy. We’re not there yet. So we’re trying to get petitions and we’re educating, you know, our lawmakers. With personal stories.
That’s something that we could bring to the table when it comes to insurance companies, because right now, a lot of insurance companies will not pay for it because they feel that it’s experimental. But when you got these positive outcomes from people who have had it done to me, you know that makes it makes a difference.
So now they can go back and see, okay, what treatment would be best to combat this type of cancer. And so for me, that’s what they did.
So the regimen that I was on, even though it was hard, it was something that did what it needed to do. And that’s why I am cancer-free because it was targeted for my specific cancer.
It’s cost effective because, if you really don’t know what you what you’re dealing with, you don’t really know what type of treatment is best for that. You’re trying different regimens and it puts a lot of stress and strain on the patient.
But if you’re a doctor and you know something is targeted that this is going to work for this type of cancer, if you use this type of treatment, this medication, then, okay, you’re saving your patient, but you’re also giving that that person quality of life and also extending their life.
I want everybody to be advocates for themselves.
Because who knows your body better than you do?
Advocate for others—and yourself
Let me finish by sharing the most important efforts in the work I’m doing with the American Cancer Society when it comes to the black and African American community.
Bringing about awareness, equipping them, empowering them to get out there and to do what they need to do for themselves. Leading by example. Sharing my story with them and letting them know.
Again, cancer is not a death sentence. Early detection is key. We must get out there and do our screenings, and also do our monthly breast exams, and not allow fear to keep you from getting the care.
Because everybody deserves to have some type of quality care.
I want everybody to be advocates for themselves. Because who knows your body better than you do?
And sometimes you go to doctors and you tell them things are going on and they push you off. And my thing is, if you go to a doctor and they cannot do what you’re asking or requiring them to do, go somewhere else where somebody will.
Because there are people that have been diagnosed and they’re already stage 3. Stage 4. Whereas if they would have had it done initially, they may have caught it earlier.
So we have to also be advocates for ourselves. We deserve to have care. We deserve to be listened to and to be understood.
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.
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.
Special thanks again to Johnson & Johnson for its support of our independent patient education content. The Patient Story retains full editorial control.
Gwendolyn Jackson initially experienced heavy menstrual cycles, back pain, and bloating, which her doctor suspected to be fibroids. Despite regular tests, including an HPV test and ultrasound, her symptoms persisted. Later, clear fluid leakage led to an ER visit where an MRI and biopsy confirmed cervical cancer.
She underwent a hysterectomy, followed by chemotherapy and radiation, but further tests revealed the cancer had spread, drastically changing her prognosis. Severe side effects from treatment, including weakness, nausea, multiple strokes, and heart attacks due to dehydration, required intensive therapy. Despite initial hesitation, she joined a clinical trial at MD Anderson, which has helped manage her condition more effectively than traditional chemotherapy.
Throughout her journey, Gwendolyn faced misconceptions about clinical trials and the stigma of cervical cancer within the African-American community. Financial challenges resulted in losing her job, insurance, and assets. She found crucial support through Cervivor, an online community for women with cervical cancer.
Gwendolyn’s experience highlights the importance of self-advocacy in healthcare, the life-saving potential of clinical trials, and the need for greater awareness and support for cancer patients.
Name: Gwendolyn J.
Diagnosis:
Cervical Cancer
Staging:
Stage 4
Initial Symptoms:
Heavy menstrual cycles
Severe back pain
Stomach bloating
Treatments:
Chemotherapy
Radiation
Tisotumab vedotin (innovaTV 301 clinical trial)
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
I started having heavy cycles, severe back pain, and bloating in the stomach.
I went to the doctor regularly. When I went for my well-woman exam, I told my doctor. He said, “I think you have fibroids. It’s very common in the African-American community.” That’s what it sounded like to me. “We’ll run some more tests.”
My symptoms persisted, so I went to my mother because I’m that girl who thinks mom can fix everything. I told her, “I’m having very heavy cycles. I don’t know what’s going on. The doctor said he was going to run some tests. They haven’t called me back yet.” She said, “You’re going through pre-menopause. I went through the same thing at the same age. It’s just pre-menopause.”
My cycle wasn’t getting any better. I finally went back to my doctor and he ran some tests. He did the HPV test and it came back negative. I was still having symptoms, so he said, “I’m going to do an ultrasound.” He did and said, “I see fibroids, so we might have to do a hysterectomy.”
In October 2020, while I was at work, I started leaking clear fluid from my vagina. I knew I wasn’t pregnant, but it felt like my water bag had burst. I said, “Okay, this is not good.”
When I saw cervical cancer written on that paper, I lost it. He wrote it down before they even found out I had it.
Going to the ER
I wish I could remember the name of the doctor who saved my life. I don’t know what would’ve happened if it wasn’t for him and that MRI.
When I went to the emergency room, a younger doctor who looked like he had just become a doctor said, “I want to run some more tests on you. I don’t feel comfortable with everything you told me. What can we lose? Let’s do an MRI.”
After the MRI, he came back and said, “I see fibroids, but I see something under the fibroid, so I’m going to send you to a gynecologist specialist, so they can run more tests because I’m not sure,” but he put “cervical cancer” on my paperwork.
I went home and did the worst thing I could do. I went online and searched “cervical cancer.” My father passed away from cancer, so when I saw cervical cancer written on that paper, I lost it. He wrote it down before they even found out I had it.
Diagnosis
Seeing a Specialist
I went to the specialist who said, “We have to run a biopsy. Calm down. Don’t worry. You’re pretty healthy. I see all the tests they’ve done. I don’t think you have cervical cancer. It might just be fibroids.”
Getting the Official Diagnosis
I was diagnosed during the COVID pandemic, so I had to go by myself. On the way, I talked to my mother and my sisters. Everybody said it was just fibroids. My sister said, “We have fibroids. We had to have a hysterectomy too.” They were reassuring me, so that’s what I thought.
I went in thinking I had fibroids and left finding out I had cancer. You will never forget the day. I was diagnosed on November 17, 2020.
I started treatment right after I recovered from the hysterectomy. I thought it was just a preventative measure to make sure I was okay.
Reaction to the Diagnosis
When you first hear, “You have cancer,” it doesn’t register. For some reason, I thought I was exempt because I was helping people with cancer. I started my nonprofit in memory of my father who died from lung cancer. I thought, I eat right. I run five miles every morning. I don’t smoke. I don’t drink. What did I miss?
Cervical cancer has this stigma that people who get it are either prostitutes, have a high sexual drive, or don’t go for their well-woman exam. That’s not me. On the way home, I thought it was something I did wrong.
I wanted to find out for sure first. The doctor put it on the chart and then gave me paperwork for the referral. I was left alone not knowing if this really was true. That two-week wait was difficult mentally.
Treatment
Hysterectomy
They said, “We’re going to go in and remove the whole tumor. After, you’ll do radiation and that’s it. Your life will be back to the way it was,” so that’s what I thought.
I had a full hysterectomy on December 17, 2020. The tumor was 9 centimeters. Before I went in, they were telling me, “You’ll be fine. After we remove the tumor, radiation will take care of everything else.”
After 6 to 8 weeks, I went for radiation. My doctor did some blood work and he was concerned with the results. He said, “The blood work didn’t change. Something isn’t right. I’m going to do an MRI and a PET scan. We have to see what’s going on.”
After I had the hysterectomy, they said, “We’re going to do radiation and you’ll take a chemo pill. That’s just protocol.” I started treatment right after I recovered from the hysterectomy. I thought it was just a preventative measure to make sure I was okay. They were thinking they got everything not knowing that it was spreading.
The chemo was so hard on me. Some days, you can’t get out of bed. Some days, you don’t have an appetite.
Cancer Spread
They found out that my cancer had spread to my hip bone, my legs, and my spine. Imagine going from everything is going to be okay to find out you have 16 months to live.
I said, “God, I don’t want to die. I just had grandchildren. I just turned 49. I haven’t hit 50 yet. I’ve been waiting to be 50 all my life. Please give me more time.”
When they realized it spread, my team had to come back together and treat me differently. They were going to try a bone marrow transplant, but they couldn’t do it because of how mine spread. My insurance would no longer approve it.
Knowing that was all they could do, I got scared. I have anxiety and depression, and I take medication for them now. I’ve never had depression before, but because of all of this, I take medication for it.
Chemotherapy & Radiation
I didn’t want a port. I asked, “Can we figure out something? Is there a way that I can take pills?” I took chemo pills and did radiation.
Side Effects of Chemotherapy & Radiation
The chemo was so hard on me. Some days, you can’t get out of bed. Some days, you don’t have an appetite. You don’t want to eat. You look at food and get nauseous. People don’t understand that. It’s not that we don’t want to. I’m trying. I’m showing up every day and doing the best I can. I used to tell my dad, “Come on, you can eat. Come on, you can get out of bed.” Now, I understand.
The radiation that targeted my cervical cancer was terrible. It burned the lining of my stomach and I kept getting infections.
I used to help my dad button and zip his clothes. I have the same issues now. I can’t button or zip. These are everyday things that we take for granted. I also felt numbness in my fingers and my feet.
I couldn’t keep anything in my stomach. I was vomiting and had diarrhea. They were giving me medication for everything, but nothing was working.
I feel so weak and cold all the time. I always have a heater with me, but I was so, so weak that I didn’t think I was going to make it. My daughter and the guy I was dating at the time were very helpful. They would bathe me and help me get up.
Because I lost so much weight and wasn’t strong, even my doctor was saying, “You’re getting weaker and weaker.” He kept prescribing me medication for nausea. They finally found a prescription that worked for me and that I love.
Radiation burned my face. It was burning and itching at the same time. My face swelled up and blistered. My doctor told me about a cream I could use, which cleared up my face.
The radiation that targeted my cervical cancer was terrible. It burned the lining of my stomach and I kept getting infections. I never want to do that again ever.
Strokes & Heart Attacks
When I went to the hospital, the ER doctor said, “She has high blood pressure.” I said, “No, I don’t have high blood pressure.” When he checked, my blood pressure was very low. When they ran tests, he said, “You’re having a stroke and a heart attack, and it’s because you are severely dehydrated. You need fluids in the body to make all the organs work.” I didn’t even know you could have a stroke or a heart attack from being severely dehydrated.
I had to stop treatment temporarily because I was in inpatient therapy for 14 days.
Recovering from the Strokes & Heart Attacks
I couldn’t walk, so I was in a wheelchair. I had to stop treatment temporarily because I was in inpatient therapy for 14 days and then I went to the Centre for Neuro Skills in Webster, Texas. I always speak so highly of them because they gave me my life back.
When I came in, I felt so helpless. I wouldn’t use the restroom, even though I was there from 9 to 2 o’clock. I didn’t want anyone to take me. I ended up getting a UTI and people there had to tell me, “We’re here to help. We want to make you better. You have to allow us to help you. You’re still the same person.”
I had three mild strokes. They didn’t understand the last one I had. They said, “Usually when you have a transient ischemic attack, you bounce right back.” I didn’t, so he said the last one wasn’t a TIA. It was a regular stroke because I had all the symptoms. I had to go from a wheelchair to a walker to a cane.
Because of the strokes, I can’t remember exactly what chemo I was on.
Joining a Clinical Trial
I met a doctor at one of Cervivor’s retreats. She was different if that makes sense. I knew that she cared about people. She said, “When you get back to Houston, let’s stay in touch,” because she worked at MD Anderson. I said, “My treatments are not at MD Anderson.” She said, “Let’s just stay in touch.”
My doctor never brought up clinical trials. I was doing some research. I kept hearing other patients talk about clinical trials when I went to the doctor. I decided I was going to ask my doctor, but I want to have information before I go in. I wanted to educate myself.
My doctor said, ‘This is great, but these clinical trials are at MD Anderson. If you can get in, go there. I’ll send your medical records over.’
I reached out to the doctor at MD Anderson and asked about clinical trials. She gave me all the information, told me which ones she recommended, and sent an email right away. It was after hours and she was volunteering her hours to help me. She’s still a big supporter of mine. She still checks on me and asks how I’m doing.
I took the information to my doctor and my doctor said, “This is great, but these clinical trials are at MD Anderson. If you can get in, go there. I’ll send your medical records over.”
My dad enrolled in clinical trials at the end and I said, “Y’all not helping him. This is not helping him.” My dad was such a great guy. He said, “This is how they’ll find out if it works for someone else. If it doesn’t work for me, they know it doesn’t work. If I can help someone, that’s what I want to do. I want to help someone.”
I didn’t understand at that time because I wasn’t a patient. But when you become a patient, you feel that way. If it doesn’t work for me, we know we have to try something else. If it works for me, that means this could be it. If I have to go through all of this to make sure it can save me and someone else, it’s so worth it.
When I went to MD Anderson, they had to do all the scans themselves. Their team comes in and speaks with you, and they have a team for everything. Even though I had cervical cancer, they also had a bone cancer specialist.
They redid all the tests I already had to make sure what they had in the file matched. Once they did everything over and made sure I was good to go, they started talking about treatment.
The clinical trial I’m on is called innovaTV 301. It’s a phase 3 study of tisotumab vedotin.
I like tisotumab vedotin better than traditional chemotherapy. It’s not so hard on my body.
Side Effects of Tisotumab Vedotin
They gave me medication for nausea and vitamin B12. So far, so good. The steroids are putting weight on me. I was a little nauseous at first, but the pill helped with that.
I lost my hair. I went bald when I first started and then it started growing back.
With bone cancer, being cold is a no-no for me. It’s very painful, so I wear a lot of warm-ups or layers to try and stay warm. Even in the summer, when I feel cold, I’ll be in warm-ups. I tell people all the time to be nice to people in warm-ups because you never know why they’re wearing them even when it’s warm out.
I noticed my appetite was not the same. I’ll crave something because of the steroids, but when I get it in front of me, I might take one or two bites and then I don’t want it anymore.
I like tisotumab vedotin better than traditional chemotherapy. It’s not so hard on my body. Do we know if it’s working? I don’t know if they think it’ll work. They’re buying me more time, so if that’s what it can do, I’m okay with that.
In the African-American community, clinical trials are frowned upon…In our mind, we still think we are being experimented on.
Misconceptions
In the African-American community, clinical trials are frowned upon. I think it goes back to when they were using African Americans for experiments and being the guinea pigs. In our mind, we still think we are being experimented on. If you tell anybody you’re doing clinical trials, they think you’re being a guinea pig.
I didn’t have the support. Everybody supports you when you’re going through chemo, but when it comes to clinical trials, they think you’re letting them experiment on you. They don’t care. I have to keep it to myself. I’ll tell people who are battling cancer that I’m in clinical trials, but other people, I don’t.
When it comes to the medical team, sometimes we feel like we’re not being heard. At first, I felt like my doctor wasn’t hearing me when I said it wasn’t fibroids and that something was going on, but they kept brushing me off.
I thought it was just Black women who go through that. Being in the teal and white community and the Cervivor community, I found out that it’s women as a whole. They are not listening to us.
Insurance Coverage
People think that if you want to be a patient at MD Anderson, you can just show up. It doesn’t work like that. When I first found out I had cancer, I wanted to go to MD Anderson because they’re number one. My insurance wasn’t in their network so they couldn’t take me.
While I was going through all of this, I still had insurance because I was still employed. They took excellent care of me during that time, but they could only take me so far. I was getting temporary disability, but my doctor put “permanently disabled” on my paperwork, so I had to resign from my job. They knew I wasn’t coming back, so they said, “You’re going to have to figure out your insurance yourself.”
Even with insurance, I was paying $2,000 to $3,000 for treatment. I lost everything. I lost my cars and my townhouse. The clinical trial was free for me, so that was good. They just had to make sure everything lined up.
I needed people who understood what I was going through, the stigma that comes with it, and that we have a voice. We didn’t do anything wrong.
Finding Support Online
I felt like nobody understood what I was feeling or going through. My mother kept saying, “It’s going to be okay,” but I told her, “What if it’s not? What if I die? What if this is my story?” But, of course, she didn’t want to hear that. “No, you’re going to be okay.”
My sisters were supportive, but nobody knew what I was going through. The only person that I felt I could talk to was deceased. My father would be the only one that would know what I was going through.
I went online and found Cervivor. I needed them more than they probably knew. I needed people who understood what I was going through, the stigma that comes with it, and that we have a voice. We didn’t do anything wrong.
I went to a retreat because I needed to be around these women. I needed them to love on me and I needed to love on them. They gave me hope. They said, “You can do this. You can fight this. Don’t give up. We support you.” They have a group chat where they talk about whatever they’re going through. If somebody doesn’t respond, they all get nervous.
Words of Advice
Cancer taught me to slow down because I was always on the go. I never slowed down to notice anything. Now I would stop and notice things. “Did you know mom has roses in front of her house?” And then I would stop and smell them.
Everything matters to me now because I don’t know how long I have. When I had my stroke, I couldn’t walk and we take that for granted. Even going to the restroom, I needed someone to help me and I appreciate that so much now.
Clinical trials can save us. I’m doing pretty well. It’s working for me. I’m still alive because of the clinical trial. My brother, who has cancer, is on a clinical trial and doing well too.
A doctor told me, “When you go into the doctor’s office, they are working for you. You are not working for them.” When you have that in mind as you’re going in, it’s different.
If you feel like something is not right, speak up. If there’s a treatment that you don’t want to do, say it. We get so nervous when we go in that we freeze up. Use your voice.
Cancer taught me to slow down because I was always on the go… Everything matters to me now.
In addition to Gwendolyn’s narrative, The Patient Story offers a diverse collection of cervical cancer stories. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.
Symptoms: Intermittent spotting during or after sex, unpredictable menstrual cycle, abdominal pain particularly under the rib cage Treatments: Chemotherapy (cisplatin & paclitaxel), immunotherapy (Keytruda), surgery (total abdominal hysterectomy with bilateral salpingo-oophorectomy & omentectomy) ...
Tony’s Relapsed/Refractory Diffuse Large B-cell Lymphoma (DLBCL) Story
Tony was in peak physical condition, working out several times a day when he suddenly began to struggle with fatigue.
After undergoing scans and tests, he was diagnosed with diffuse large B-cell lymphoma (DLBCL), the most common adult form of non-Hodgkin’s lymphoma. He would later learn that his specific subtype is known as T-cell/histiocyte-rich large B-cell lymphoma (THRLBCL).
Before his diagnosis, Tony was an avid cyclist and fitness enthusiast. He noticed a decline in his physical performance despite his extensive training routine, as well as swelling in his leg. After consulting with his chiropractor and internal specialist, a CAT scan revealed that he had cancer.
Although his blood tests did not indicate lymphoma, the cancer had spread extensively throughout his body, leading his doctor to believe that he may have had it for years without knowing.
Tony made a conscious decision to keep a mindset of strength and perseverance that allowed him to face his diagnosis.
He voices how he processed his diagnosis, how he dealt with the side effects of R-CHOP chemotherapy and CAR T-cell therapy, and what he did to stay mentally and physically strong.
Thank you to Genmab & AbbVie 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.
Name: Tony W.
Diagnosis:
Relapsed T-cell/histiocyte-rich large B-cell lymphoma (THRBCL)
Initial Symptoms:
A lot of effort needed cycling; body wasn’t responding the same
I’m an igniter. I have started several businesses in my career.
I went to North Carolina State University and majored in civil engineering and pre-med. I wanted to be a doctor at some point.
I’m an avid cyclist. I love to work out.
I’m a go-getter. I can’t sit still. I like to initiate things and see things come to fruition.
I’ve always been that person that didn’t need someone else to motivate me. I’ve been highly self-motivated [throughout] my 51 years on this planet. I just love learning new things.
I play the organ, the bass guitar, [and] the saxophone. I love music. I sing [and] write music.
Anything that I put my mind to, I try to do the best that I can do.
My T-cell histiocyte-rich large B-cell lymphoma story
If you ask anyone who knows me, they would say, “No, not him. Can’t be Tony. No, you’re joking.” I lost a lot because COVID hit exactly at the same time. It was rampant when I got sick.
At the time, I had about 200 employees working for me. We lost a lot of contracts and things were just out of my hands. I couldn’t do anything about it because I had to focus 100% on my health.
Cancer doesn’t care [about] your economic background, what race you are. [or] your social status. When it comes for you, it will come for you no matter what you thought you had built up in life.
I thought I was leaving some legacy behind and it came for me. What am I going to do after it comes for me? I never asked myself why. I said, “Okay, why not?” And that was my approach. Why not?
I’m a guy that works hard, does a lot in the community, [and is] active in the church. There’s no discrimination. It can happen to anybody.
Pre-diagnosis
Initial symptoms
I’m an avid cyclist. We ride a lot of miles. At that point, I was doing about 350 miles a week. Being in an endurance sport, you learn [about] your body.
I have this reputation on the team of being pretty fast and pretty fit. I wasn’t giving the guys the business like I normally would be doing. It was just a lot of effort. Something wasn’t right.
They couldn’t really tell any difference because I just won’t stop. I give everything I have, but my body was not responding the same. If I wanted to go an extra five miles an hour, it was a struggle. Coming out the curb or the corner trying to chase somebody down was a struggle.
Then I started noticing that my leg was swelling. I lift weights a lot. I do spin class a lot. I said, “Maybe I hurt my back.” My chiropractor worked on it and she said, “This isn’t getting better. Your leg is swelling.” We thought it was sciatica nerve, but it wasn’t. She said, “Maybe you need to go see your internal specialist.”
I went to the internal specialist. We were thinking maybe I had kidney stones or something bacterial was causing me to experience this. When she checked me out, she said, “You look healthy. There’s nothing wrong. Your blood looks fine. But how about we just do a CAT scan?”
That’s when we had that “Oh my!” moment.
I was 49 going into 50 years old that year. I thought I was going to have this great 50th celebration. I was sitting in a chemo chair on my birthday.
When I first saw my oncologist, the first words that came out of his mouth [were], “If you were not as fit as you are, we would be having a different conversation.” All those miles, all that training, spin class, and gym work, whatever small percentage that was, gave me a jump start and it might have saved my life.
I’ve been an athlete all my life. You develop this push-through-no-matter-what mentality. We push past the threshold. That’s not a good thing all the time.
Think about professional athletes [and] collegiate athletes. Everybody pushes through but they pay for it [in] the end. That’s the mentality that you develop. No matter how you feel, you just push through.
“This hurts.” Push through. “I feel a sore here.” Push through. You develop that mentality that I’m going to beat whatever how I’m feeling and I’m going to still push through. That’s simply what I was doing.
Diagnosis
My blood wasn’t giving them anything. They would run my blood and it would come back good. No signs of lymphoma.
I look at it as if it was the perfect storm. If your body was going to operate in its most perfect form, my lymph nodes did exactly what they were supposed to do.
My cancer was so prevalent that my doctor thought I might have had it for years and didn’t even know it. It had completely taken over my stomach, my lung, everywhere.
I could see the fright in my doctor’s eyes when he saw [the scan], but he could see the tenacity in my eyes. When he told me what it was, [he went] over options.
I had to make a conscious decision. What are you going to do about it? There [wasn’t] any time for tears. I didn’t cry at all. I sat there and made a decision. I looked him in the face and said, “Okay, game on. Let’s go.”
I cried later but [at] that moment, I made a decision. I had to let the cancer in my body know: I’m not giving you victory in my mind this quickly.
I created this alternate reality. I created this warrior mentality. “You coming for me? I’m going to come for you.” No matter what my doctor said, I already told myself that [I’m] going to beat this. I’m going to do whatever I have to do to overcome this.
Breaking the news to family & friends
Initially, I didn’t let anyone know. I’m very methodical and I like to see things through before I bring attention to something. I want to have control of the situation. I wanted to know exactly what was happening because people are going to have a lot of questions.
Going through a chiropractor and my initial doctor locally and even once my oncologist told me, I still didn’t tell them about it. I waited.
I went for a walk. We have a pond in my neighborhood so I sat out there on the pond bench and that’s when I had my moment.
I called my mom. I’m the first child, the oldest grandchild. I remember telling my mom, “I don’t want to die.” She said, “What are you talking about?” I started crying and that’s when I told her.
My wife was there so she knew, but she was frightened. She didn’t know what to say or what to do. Then I told one of my best friends.
It hit me when I was talking to my mom. That’s the person that birthed me. It was devastating.
After that conversation, I zipped those tears up. I said, “It’s not a crying situation. It’s time to go. Time to go to work.”
Drawing boundaries
I said that I will not let family and friends imprint on me. We’re going through enough as is. We know our odds. We know the percentages. We know what we’re facing. Sometimes, [because of] their mere concern for you and all the emotions they bring to the situation, loved ones will compound your situation.
You have to put them at arm’s length. You can’t take on what they’re saying because sometimes, out of love, they will give you bad information or will remind you, “Only 1% of people live from this?” They don’t mean any harm but their words will hurt you.
This is what I did. Love your loved ones, but guard yourself. At the end of the day, it’s a one-on-one thing. You’re battling that cancer. You’re battling everything that comes with it. They’re not doing that with you. They will stand with you, but they’re not here. That’s where your battle is.
The crying was symbolic of accepting what was happening. It’s real. We can create all the alter egos we want, but accept that it’s real. The crying just released that in me.
I felt free. A freeness came over me. It was a calm and peace that came over me. I felt like it was necessary.
A lot of times, men are providers. We like to take care of things. We have our egos. We want to feel important. We validate ourselves by what we can do for you, what we can give you, or how we can protect you.
We’re not conditioned to be as emotional. Women are more emotional incubators and that’s a good thing because you need to have that balance. We need to have that also as men and sometimes we don’t. If you hold that in, [it’s] just adding more stress to your situation.
Crying and releasing helped me further along in my process versus me doing it at a time that wouldn’t be optimal. I was doing soul-searching, too. I thought, “Tony, you have done this. You came through this. You have broken through this ceiling. You have done all of these things. You can do that, too.” That’s how I approached it and it helped me.
Treatment
I had R-CHOP, which was pretty nasty.
I left my local doctor and went to [the] UNC hospital system. That’s where I met Dr. Boles, my oncologist. We talked about my treatment plan. He gave me all the options and encouraged me to get a second opinion.
But I already knew. When you know, you know.
When I look that man in the eyes, I see a caring, compassionate person [who’s] concerned for me. And that’s important because sometimes, a lot of us will get someone [who] doesn’t have [a] good bedside manner, just matter of fact, or [will] bring gloom to your situation and you already know it’s gloomy.
He talked to me almost like the big brother going to the little brother who’s a doctor. You’re putting your trust in the little brother now because he has [the] skill set you don’t have. That’s [the] kind of relationship he and I have. I was the big brother who was relying on him as my little brother to take care of me.
One thing he told me [was], “Tony, by nature, you’re not a selfish person. You employed people, started a cycling club, and you did all these things. You give a lot to people. But I need you to be selfish. This is the one time you will have to be the most selfish in your life.
“You have to block out all the background noise, all the chatter. Stay off of Google. Inundate yourself enough that you understand what’s going on with you, but don’t deep dive to the point that it causes hysteria.”
Keeping physically active during treatment
[During] certain rounds of my chemo, I was walking five miles a day every day and doing my spin trainer 30 minutes a day.
Finally, Dr. Boles said, “Tony, you got to pick one. You can’t keep doing both.” I already made a determination that I wasn’t going to let those chemicals run roughshod in my body and not do something about it.
I’m out there walking when I was feeling sick, made my other body systems kick in, and it made me feel better than just sitting there. Doing pushups gave me something to look forward to. It made me feel defiant. The more I became defiant, the more I start seeing victories.
Instead of losing weight, I was gaining weight. I was gaining muscle when I shouldn’t have been gaining muscle.
When I look sick, it affected everybody around me. They didn’t know how to handle me. They were very cautious because it was just so unnerving. Not only did I have cancer, which was evoking something in them, I now physically looked the part.
When I first got diagnosed, I got down to 167 pounds. I went to my doctor after chemo and one of my PAs said, “Tony, you’re losing too much weight.”
I basically starved cancer. I stopped eating bread [and] sugar. I only ate green greens like spinach and kale. I said, “I’m not giving you anything that you can live off of.” I was losing 6-7 pounds a week. She said, “You can’t do that. You’re losing way too much weight.”
The next time she saw me two weeks later, I was at 190 pounds. When she saw me the next week, I was at 205. I never stopped. I started doing pushups. I start physically challenging myself.
You don’t have to be that extreme, but I didn’t have anything else to do. I do believe that if you’re not physically fit or capable of that, do something. Don’t sit there. Show cancer that you will be defiant.
Dr. Boles told me, “Tony, one of my biggest challenges with my patients is me looking at them and saying, ‘Maybe just walk.’ But I’m looking at a person that never walked in their life so I have to be realistic and say if they weren’t walking before, it’s going to be hard for them to walk afterward. If everybody would just physically move their body, you’re going to move those processes along in your body.”
Chemo is designed to fight cancer, but it wreaks havoc on your organs. That’s a problem for a lot of people. I said to myself, “I need a healthy lung, I need a healthy spleen, I need a healthy heart,” and the only way I knew to keep those things active was to move. That’s what I chose to do.
I’m not trying to be anybody’s superhero. You have a baseline and then you have an extreme. All of us still want the same thing, to be cured and healed. I did, too. I chose the extreme. At the end of the day, we all want to get to the same place. Choose what motivates you to get to that place.
Side effects of R-CHOP chemotherapy
R-CHOP was funny. I’m just an enigma. Because I was doing those things, I’m just breaking all the rules.
I was going every 21 days. After my first R-CHOP session, Dr. Boles and the team would say “How are you feeling? You feel any chills?” No. “Sweats?” No. “Your hair? Well, obviously, your hair is not falling out.” Mm-mm. “You feel nauseous?” Nope.
I had no symptoms that first week. I really believe they didn’t believe me because he dragged me back in there right after the next R-CHOP session to test me. I didn’t feel anything. I was saying, “Oh, this is going to be easy.”
[The] second week, [I] got really sick. I was going into this pattern. [The] first week, I was good. [The] second week, didn’t feel so good. [The] third week, the light came on and I felt like I was back. That was my process all the way throughout like clockwork.
My body is responding pretty well. I had the Red Devil. I’m doing fine.
The right-hand side [of] my initial scan [was] what it looked like when I first walked into the door. A couple of weeks later, on the left side, was my scan after and that was a premature scan because he wanted to see what was going on. You could see how much of that cancer was eradicated just like that.
On my second round of R-CHOP, I see a bunch of needles. I said, “Whoa! Where are the bags?” They started giving me injections in the stomach.
Dr. Boles said, “You responded so well we’re going to go with some direct shots,” and they [were] putting half of my chemo directly in my stomach because I could handle it. That’s how strong my body was.
I have a port. I recommend getting a port because it saves your veins in the long run.
Hair loss from chemotherapy
Hair loss kicked in on my third session. I went to the bathroom, cut my hair, and it just start coming out in globs. It went just like that.
Your hair’s like your badge of honor. You take honor in that until you have that recessive gene and you lose it and can do nothing about it. But that hadn’t hit me so I still had mine.
You’re not going to get through this with no [side effects] at all and hair was one of them. To lose that, I felt like this is real. Cancer is still fighting. The chemo is doing what it’s supposed to do. It just was a reality check for me.
I would cover my head a lot. I didn’t like the bald look so I don’t have a lot of pictures from that. I don’t want to be reminded of that. I started wearing beanies and look more stylish, but there was no hair.
Savoring the small wins
When I started getting little stubble back, I felt good again. It’s funny how that works. You defeat it when you lose your hair, but when it starts growing back, you are so excited. Even if I didn’t have a lot of it, I was happy that it was coming back. It was like a victory.
It’s these small victories you have that you start thinking, I’m getting better. Cherish those moments because any moment that you can have and savor is a win for you.
Post-chemotherapy PET/CT scan
At the end of R-CHOP, Dr. Boles gave me a couple of months off. When I started feeling well, I jumped right back on the bike again. I was feeling good about myself. I thought, “Maybe we won.”
When I had that PET scan, he brought me back in and said, “Well…” I knew. He said, “We’ve got a couple of concerning areas.” I said, “Maybe they’re dead cells, just not giving up.” He said, “No, I don’t think so.”
At that point, I said, “Okay. I got to re-engage.” Dealing with cancer is a battle of engaging and re-engaging. For that brief month or two, I disengaged. But when he told me I had some trouble spots, I had to re-engage all over.
Relapse
Mentally, that was challenging. You have to have a counselor or someone to talk to. I started journaling and I would talk to myself a lot. I would talk to my body and my cells.
He said, “I’m going to send you to the big house, UNC Chapel Hill,” that’s where the teaching hospital is. “I’m going to send you to specialists there.”
He said, “I’ve taken you as far as I can take you, Tony.” [Do] you know how humbling that was to hear a man of his stature saying that? He’s pretty credible. He said, “I’ve got to send you somewhere else, someone that’s better than me.”
So impressed with UNC, so impressed with them. Again, he gave me options. I said, “You know what? The UNC family has been really good to me.”
When I met Dr. Grover, she was just like him. She was amazing. Later on, she said he told her, “When you meet Tony, he’s not going to look like you think he looks. He’s not going to respond like you think he’s going to respond. Just be ready because he’s going to be the opposite of anything that you’ve ever seen.”
CAR T-cell therapy
Early on, I had mentioned to Dr. Boles, “What about CAR T?” I had done a lot of research. He said, “That’s not available at the time,” cause it wasn’t available to my specific type so it wasn’t an option.
In December 2021, CAR T came online for my specific type. When I got to Dr. Grover, she said, “Tony, I have great news. You qualify for it,” so that’s what pushed us into CAR T.
I knew my body needs a break from chemo. That was not going to be an option.
I was very interested in CAR T from a scientific standpoint — taking your cells and modifying them to specifically attack cancer. That’s pretty ingenious.
Cancer is a very smart cell itself. It can change and evolve. Initially, your T cells will jump on it and eradicate it, but cancer will evolve and say, “We’re going to trick you. We’re going to change our makeup so you don’t recognize us,” so the T cells just come cruising right on by it and cancer can still proliferate. I thought it was interesting how they would reprogram ourselves to recognize the tip [of] the cancer.
I said, “This is if insurance would pay for it.” That’s the main thing. They said yes and that’s how we did CAR T. No other options. I wanted to do that one.
Doing research to help with treatment decisions
You have to do an honest assessment of how you’re feeling coming out of this. Chemo can be rough. If you feel like your body can’t handle that, seek second opinions. If your body’s telling you it can’t handle any more of this, it can’t. You may need a break if you can afford to have a break. But if there [are] other opportunities, make sure you understand what they are.
If you don’t feel right and you don’t feel good, you can’t continue down that path. You have to have time where your body can gather itself. That’s what I encourage more so than anything.
Understand your body and understand how much more of this you can take. Pay attention to what your levels are and how your organs are responding and that will tell you what your course of action should be. You have to make sure everything is at a place [where] it could handle another round or another series of chemo.
You have to ask yourself: how am I feeling physically? If your doctors say you’re at a point [where] we’re not as concerned with it spreading rapidly, pause a little bit just to get your mind and body back together so you can engage again. That’s what I would encourage, more so than what treatment you’re seeking.
Don’t be so quick to rush into one treatment, into the next, into the next because that degradation would take place in your body at some point.
Just the word practicing medicine is exactly what it is. It’s practice, unfortunately. They do the best they can through what they’re dealing with, their education, and what they’ve been exposed to, but it’s still practicing medicine.
Holistic care in conjunction with cancer treatment
I found a holistic doctor so I was doing holistic medicine in conjunction with chemo. I was researching holistic doctors in other countries that may not have the scientific approach as developed countries. Some of them rely on Mother Nature who provides us with everything that we need, too. I started looking at plants and herbs that can help me detox.
As quickly as you can detox chemo and chemicals out [of] your body, the more readily your body will be if you have to do it again. I was looking at different options to detox myself outside of traditional medicine.
You don’t want to just keep adding chemicals to your body. They give us chemo then they give us these other pills to help with this and that. But sometimes, Mother Nature gives you that and your body is readily absorbing that versus the tablet.
I would tell them what I’m taking because some of that may affect chemo. Chemo is strong and designed to do what it does. Sometimes you can alter how it works by taking some of these things.
Don’t be a renegade. Do these things in conjunction. Make sure you let them know what you’re taking and then they can tell you. Some things he would say, “I don’t recommend that,” then he will tell me why and it would make sense. Seek other opinions but also validate that versus what you’re already doing. You got to have that balance.
When I would throw all these things at him and he didn’t dismiss me, that’s when I knew he was the doctor for me. Your physician and your team matter. You have to feel good about them. If you don’t feel good about them, find someone that you do. They affect everything about your situation.
If you don’t feel loved or feel like they care, then with the treatment that they’re giving you, you’re not going to have confidence in that. Make sure you feel good about them.
Preparing for CAR T-cell therapy
CAR T was my most difficult time simply because I was just so uncertain. I was saying to myself, “Okay, I went through R-CHOP. What if CAR T doesn’t work? What’s better than that?” For a moment, my mind would go dancing.
The chemo depletion was very hard for me. They take you to the edge. I had three days worth of chemo depletion.
When you’re sitting there, you can be full of life and your eyes could be all bright and bubbly. But when that chemo starts coursing through your veins, it’s almost like a dimness comes over your body and you can feel an extraction of life just coming out of you. It’s like getting close to death.
Chemo depletion is exactly how it sounds. They depleted my body to the point that there was nothing [so] that it would accept those CAR T cells.
The first day hit me so hard. I went through six rounds of R-CHOP and I didn’t feel like that because they would always give me something to try to bring me back. They would give me the white blood cell shot and help me boost myself back. But this time, [there] was none of that. I could feel like my essence leaving me after that first day.
You had to be within 15 minutes of the hospital. I live an hour and something away so I had to move up there. I stayed in a SECU House, which is like a Ronald McDonald House for grown-ups.
They took me through the back entrances of the hospital to get to the CAR T center because you had to be away from people. You had no immune system at that point.
I always would pass the chapel going up. [On] the second day, I went in and broke down crying. I said, “Lord, I can’t do this.” It drained me so bad I felt like I couldn’t do anymore.
I sat in that chapel [for] about 5-10 minutes. Then I got up, dried my tears, sat in that chair, and had my second day. I did the same thing [on] the third day.
I stayed at the SECU House and started my rehab and recovery. The people there were great. They cook for you, you meet other cancer patients in [the] same situation, and you realize that there [are] a lot of people in worse situations than you.
Nurses call me Zeus at the hospital. At the SECU House, I saw people fighting for their life and I’m walking around like I’m going to a training camp somewhere.
Typically, you have to be there [for] 30 days depending on how you respond and you have to go to the hospital every day for labs. [In] my first seven days, I had no symptoms. I was feeling great.
I was sitting there talking to my CAR T cells and said, “You guys are my special forces.” Every night, every day, I would check in with them and say, “Hey, what [are] you guys doing?” They’ll say, “Executing. Executing, boss.”
I would talk to myself like that literally. I thought, “Execute. Go into the highway and the byways in my body and find cancer and kill it.” I was just talking to my body.
After the seventh day, my head nurse said, “You’re doing so well. We’re going to let you go home.” This was a Wednesday. That Friday, I got super sick, wound back [in] the hospital, and stayed for 10 days. My doctor was joking, she said, “You [were] my little superstar and you wound up back in here.”
I didn’t have any other side effects. I was lethargic for a while. The fever was the only thing that showed up. After they determined how to get that down and I actually broke it, they let me go back home and I’ve been home ever since.
Post-treatment scan
I finished the CAR T in December 2022 and had another PET scan [in] January 2023.
We found some cells, but I told Dr. Grover the same thing. I said, “Maybe they’re dead.” She was the same way, “I don’t think so.”
I was very discouraged because I put a lot of faith in the process. But all hope wasn’t lost because we were unsure.
The spot that I still had resonating was in the original area. It was very difficult to get to so she wanted to do a biopsy. They went through my hip to get to it. They took 16 to 18 samples and they were decent samples that we could tell what’s what.
Miracle moment
If you believe in miracles, I would say this is a miracle moment. When I met with Dr. Grover [about] the results, she said, “Tony, it looked like someone had pinched it.”
If you can imagine pinching your cell, smashing it, and just excreting everything in it, like you squeezing something really, really tight, that’s how that cell looked. She said, “The report said no lymphoma found.” I thought, “That’s a miracle, right? That’s a miracle.”
But doctors don’t deal in those terms so they’re not going to say certain things. They’re not going to give you certainty or anything because they don’t know. But we both were smiling. No lymphoma found. It was inconclusive.
I have another PET scan to prove whether or not those cells were active, dead, or whatever they were. We will know more.
I had another moment of victory. Typically, when they give you that report, it’s a whole page. When the radiologist gave the report, it was only five lines. That’s all he said. It looked like this and no lymphoma found so that was a win for me.
At that moment, I didn’t want to talk about the what-ifs because now, my faith is renewed again. I’m engaged.
I’m telling myself, “When we have this next PET scan, it’s going to reinforce what we already thought. Those cells are going to be dead.” That’s what I’m saying to myself.
Now, what if it’s still there, right? But it’s the same what-if that we had before. We never did targeted radiation, stem cell transplant is still on the table… A whole lot of stuff is on the table because of how my body responded. My organs are super healthy so they feel confident that I could withstand something if we had to.
I ask my body to respond every time I get knocked down. I think that’s just my faith. That’s the promise that I believe, that I hold on to.
A lot of times, it [doesn’t] have to make sense to a lot of people. It just has to make sense to you because that’s what’s keeping you going. If you’re putting your faith in that, that’s what’s keeping you going. I don’t care what nobody else thinks. Eliminate the background noise.
Words of advice
You have to cry. Go somewhere alone. I was alone, out in nature, crying, [and] talking to my mom. You can’t do that amongst other people. There are moments for that.
You need to have that alone time so you can get yourself prepared for what’s to come. It’s going to help you because it makes them stronger.
Listen to what your body is telling you
Get checked. Do your yearly checkups. Go beyond that. Get your blood analysis done. Take more control of your health.
Sometimes if you feel pain, it’s for a reason. Just go get checked out. I was one of those ones that, “I don’t need to go do that. I know what to do. I’m just going to put some ice on it. I’m going to get a massage. I’m going to do this.”
Go get checked because sometimes, there are things going on in your body that you can’t see that need to get checked. For all the athletes, for mom and dad sitting on the couch, your kids, get checked out and go a little further.
Sometimes the basic check is not enough. Add extra to that. Get your prostate checked if you’re a man. Get [a] mammogram if you’re a woman. Get the blood test done so you can see what’s going on in your body. Those things matter. I would definitely do that over because I didn’t do a great job of that at all.
Make the most of your hospital stay
I made a lot of friends in the hospital. Try to make the most out of it. The nurses and I would have fun. I used to tease them all the time.
You would think, I’m here for my care. They’re giving me chemo. They’re taking care of me. Then they ask you if you’re hungry and they give you some cookies. Like, “What? Cookies? Where [are] the oranges and apples?” They give you all this stuff that you shouldn’t be eating.
I had a good time. I bonded with my team doing R-CHOP. I am thankful for every nurse because they are doing God’s work. It goes unappreciated [and] devalued sometimes, but they work long hours and they legitimately care for you.
That is your frontline. You’re not going to see your oncologist in there with you. You’re going to see the nurse and you’re going to see them all the way through the end. Don’t be nasty and bad to your nurses. Love them. Encourage them.
I would do little things for them just to give them a ray of cheer because they’re taking care of me and they’re breathing life into my situation. They’re making sure I’m taken care of and I appreciate that. You got to appreciate that.
Cancer is bigger than you
This is bigger than you. Why are you in it? It’s not all about you. It’s bigger than us. When you help other people and pour into other people, it will come back to you. The more you give, the more you will receive.
You have to be selfish to protect yourself while you’re going through this, but you also have to accept that maybe [you] can help somebody. Maybe I can do something. Maybe I can [make] a difference in somebody else’s life while they’re going through this. Maybe I can volunteer at the cancer ward.
Keep yourself engaged not so much on your situation but think about someone who’s doing worse than you.
My biggest impact was when I stayed at the SECU House and I saw so many people that were worse than me; that encouraged me. People that could barely move were cooking breakfast for us, making lunch and dinner for us. They were giving back. In spite of their situation and no matter how they felt, they were willing to give back.
I said, “My life will not be the same. I’m going to give back. I can’t wait till I get some clearance runway.” We’re at the hospital a lot dealing with this. I can’t wait till my doctor says, “You don’t have to come as often. We’ll do it every quarter.” That gives me more time to get activated and start doing stuff because people need that.
Have faith
Sometimes, you just take [the] faith that you have. Faith is something that you really can’t see, so you’ve got to put it in something. Either you’re going to believe in a doctor or you’re going to rely on your faith in God. I chose to rely on that and held on to that
As a result, every time I get low [and] feel like I can’t make it, I just recall that. I’m hoping and believing in the outcome that I want to see happen.
I encourage everybody [to] grab faith and believe because that’s where the battle starts. It starts right [in the mind]. Physically, you can do all you can, but if you lose the battle [in the mind from] the very beginning, you’re fighting an uphill battle. Now you’re battling your belief that you can even be healed from this or that you can be cured from this.
When you can look beyond your situation and into somebody else’s life and try to help them, it will help your situation. It’s that faith — believing in something strong enough that you know the outcome of this end will be for you.
My wing is being fixed so I can fix somebody else’s wing and say, “You know what? At one point in time, I had a broken wing, too.”
We have our tribe. When we move and make an assault on this, together is so much better than going lone wolf. You got an army behind you so it’s not over.
Stay steadfast, everybody. It may seem difficult. It may seem bleak at times, but stay steadfast. Don’t let outside sources influence you. Stay steadfast even in your darkest moments.
Listen to The Patient Story. That’s what I did. One of my favorite stories was Nina. Those are the things that get you by.
We all have our faith, but sometimes you got to put your hands on something. You have to put your eyes on something so guard what you see [and] protect what you hear.
Special thanks again to Genmab & AbbVie for their support of our independent patient education content. The Patient Story retains full editorial control.
Stephanie Chuang, founder of The Patient Story, celebrates five years of being cancer-free. She shares a very personal video diary with the top lessons she learned since the Non-Hodgkin lymphoma diagnosis.
The Latest in Breast Cancer with Dr. Lola Fayanju at San Antonio Breast Cancer Symposium (SABCS) 2022
Interviewed by:
Stephanie Chuang
The San Antonio Breast Cancer Symposium (SABCS) provides the latest information in research, prevention, diagnosis, and treatment of breast cancer.
Dr. Oluwadamilola “Lola” Fayanju is the Helen O. Dickens Presidential Associate Professor in the Perelman School of Medicine at the University of Pennsylvania, the Chief of Breast Surgery for the University of Pennsylvania Health System, the Surgical Director of the Rena Rowan Breast Center in the Abramson Cancer Center, and an innovation faculty member at the Penn Center for Cancer Care Innovation (PC3I).
Dr. Fayanju’s focus as an academic breast surgical oncologist is on health disparities, patient-reported outcomes (PROs), and aggressive breast cancer variants.
Dr. Fayanju sat down with The Patient Story to discuss some of the latest news coming out of SABCS 2022.
discusses breast cancer, PROs, the language used around racial health disparities, and the importance of conferences like SABCS.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Introduction to Dr. Fayanju
Dr. Fayanju: I’ve always been interested in women’s health. [I was] one of those kids who always wanted to be a doctor and actually was really leaning towards OB-GYN. [I] was always interested in women’s reproductive rights.
Then when you go to medical school, you find out which parts of the body kind of attract you more. I have to admit, I was actually really attracted to surgical disease, found myself really gravitating towards surgical disease, and really got interested in general surgery.
As often happens, you are drawn into things because of the patients who move you and the mentors who inspire you. I was really moved by a patient who was a lot like me when I was a third-year medical student. She was about my age. She was actually also Nigerian.
She was presenting with a large triple-negative breast cancer, and she was alone. She had no family in the United States. I actually remember her starting to cry as I was examining her. I was seeing her in a safety net clinic. That is a clinic that was staffed primarily by trainees overseen by altruistic attendings at my medical school, who then connected those patients to tertiary care.
[I had] a wonderful couple of mentors, including Julie Margenthaler, who is the Chief of Breast Surgery at Washington University, and Ira Kodner, who was a colorectal surgeon but became very famous in the world of medical ethics, as well as care for the underserved.
Working with them, [I came] to realize that patients who presented through the safety net clinics were more likely to present with delayed care and more likely to present with a more advanced stage. That really launched, I would say, my career as a health services researcher and as someone interested in care that really reflected disparities in our society and our ability to provide equitable care.
I became interested in surgery because of the disease, I became interested in breast cancer because of the patients, [and] I also became inspired by having great mentors.
It all seems very linear, finding myself here now as a breast surgeon, but it was actually multifactorial and looks more clean and neat than it felt in the moment. But here I am today with the privilege of being a breast surgeon.
How did you feel meeting that patient who had delayed care?
I felt anger. I felt frustration. I felt the beginnings of despair, but then held myself back, thinking, “How could I make a difference?” Her experience and my experience working with the safety net clinic there actually led to a research project.
What was exciting about that [research project] is that it actually led to a change in the way that care was provided in St. Louis. It used to be the case that patients who were seen in one of the clinics that were treating patients who had no healthcare or who are underinsured — those patients often had to go back to their primary care providers to get referred to the tertiary clinic to get cancer care.
In fact, through research that we conducted, we were able to demonstrate that this led to delays because of having to redo imaging [and] because of missed appointments. It led to a change through the St. Louis Health Commission in the way that care is provided for these patients.
For me, it was a way to show that research didn’t have to be something that was localized to the ivory tower. It could actually be impactful. It could actually translate into policy and into real-world effectiveness. That was really exciting for me.
The importance of SABCS and other conferences
The importance of conferences like San Antonio, ASCO, ACR, or Society of Surgical Oncology is that we who are engaged in the scientific process take what we learn and implement it in our everyday care.
The tragedy of it is that often it takes too long. We know that the average amount of time it takes for our innovation to be implemented in routine clinical care is about 9 years.
One of the things that are really exciting [is] the field of implementation science, which at my institution, Penn Medicine’s Abramson Cancer Center, we actually have a funded implementation science center, which I’m a part [of].
That works to bridge the disconnect between discovery and delivery to ensure that what is found, what is discovered, and what is innovated by scientists actually makes it to patients.
What I would say is important about San Antonio is one, announcing new medications, devices, or approaches to care that will make a difference in the lives of patients with breast cancer. Two, updates on trials that were announced in the past that we now know more about. Then, three, ways in which we can take knowledge that has been kind of assumed to be standard and how we can actually apply that and update that in regular practice.
[Here are] examples of each of those 3 things. One, we are increasingly weighing the results of trials that will tell us how best to manage HER2-low disease. That is patients who have some HER2 expression, but where they don’t rise [to] the level of expression that we used to think was needed to benefit from targeted therapy.
An example of the middle one is the reporting of our understanding of Oncotype DX as both a prognostic and predictive tool for helping us better treat patients with estrogen-receptor-positive disease.
Then a third example is a talk that I’m giving today as part of a panel on patient-reported outcomes. [PROs] are opportunities for patients to describe how they’re feeling, what symptoms they’re experiencing, [and] what psychosocial challenges they might have that might prevent them from optimizing their breast cancer journey.
Those are 3 ways in which conferences like this allow us to communicate new findings, update knowledge we already have, and translate information and approaches we have into the clinical realm for the benefit of patients. Those are some examples of why San Antonio is important.
HER2-low breast cancer
The way to think about it is we’re looking for more opportunities for treatments. I think of HER2 targeted therapy as really an ideal within oncology because it really has changed our ability to achieve pathologic complete response — that is, eradication of tumor prior to surgery just through the use of systemic therapy.
It really has represented a gold standard that we’re trying to achieve for other types of molecular subtypes. Really, [what] we’re trying to figure out more and more is which types of HER2-low can be treated with systemic therapy. In whom can we deescalate other types of treatment? We know that some of the targeted therapy is very hard on the body, and so that’s something that we’re hoping to learn more about.
What are the new emerging treatments for breast cancer?
One of the big trials that came out several years ago was TAILORx, which allowed us to understand how well Oncotype DX, which is a genomic test that allows us to understand whether or not women with estrogen-receptor-positive breast cancer would benefit from chemotherapy in addition to endocrine therapy in the adjuvant — that is, post-operative setting.
Yesterday, an update on that was provided. It was very important in that it showed that women who had low or intermediate-risk Oncotype scores did not benefit substantially from additional chemotherapy beyond just getting endocrine therapy, except for women who were 50 years or younger. If they had an intermediate risk score, those individuals had some potential benefit from getting chemotherapy.
Worse outcomes reported for people of color
What was an unfortunate finding within the study was that Black women had worse outcomes even when you controlled for other factors. The way that was communicated was, I think, in a way that unfortunately is often communicated when trials are described.
Black race was communicated as an adverse factor, which is really not the way in which we want to describe these types of outcomes in minoritized groups. We know that race is a social construct.
As Dr. Lori Peirce, a very prominent radiation oncologist at the University of Michigan and former president of ASCO, described immediately before that presentation, race is a social construct that nonetheless has power and it is notable that in African Americans for many years, there was the one-drop rule in effect.
It was used to justify the enslavement of children of miscegenation in order to keep those children enslaved. It is also used to withhold rights from people of Native American ancestry by having it be that you have to have a certain minimal amount in order to claim Native American ancestry and take advantage of certain rights that are ascribed to them through the U.S. government.
Again, the use of ancestry is often political; it is not biological. When we ascribe risk or we describe disparities that are observed in certain groups, we need to really tease apart when we’re talking about genetic ancestry and when we’re talking about the systemic racism, bias, and the structures that contribute to seeing untoward outcomes in those groups. That, unfortunately, was not really described in the relaying of those results.
Language around racial disparities in healthcare
\We should never use language that Black race is an adverse factor or Hispanic ethnicity is an adverse factor. People’s identity is not an adverse factor, even if we find disparate results in that group.
The way I would describe those results is to say that, unfortunately, we continue to find worse outcomes amongst Black women. This is an important subject of future inquiry that hopefully will be better understood if we deliberately target Black women for enrollment in these trials, as they continue to be under-included and underrepresented in clinical trials.
Why is there a lack of diversity in clinical trials?
Many of the women who choose not to participate in clinical trials, who are African American, it’s not because they can’t afford to do so. It’s that they have a justified mistrust in the system, a system that has not earned the trustworthiness of people of color.
I think that descriptions of trial results matter. Words matter. As clinical trialists [and] as scientists, we need to think about how the words we put out there will influence [the] future behavior of the people we’re trying to attract to science.
Patient-reported outcomes
Dr. Fayanju: Patient-reported outcomes allow patients to communicate their feelings, sensations, [and] experience without the filter of the physician’s perspective. We know through some landmark work that it may actually improve survival, being able to communicate those experiences directly to their clinicians in a timely fashion.
We also know it is associated with improved shared decision-making, and improved quality of life. In vulnerable populations, it may even allow us to anticipate potential delays in receipt of care and receipt of treatment.
The difficulty is that there’s already a lot of pressure on the patient encounter with regard to what patients are trying to communicate and what doctors are trying to achieve. It’s not that doctors or clinicians as a whole aren’t trying to hear what their patients are trying to say. It’s often you have 15 to 30 minutes to accomplish all of those things.
What I’m hoping to communicate is how best to do that. What are some strategies for collecting that data prior to the patient encounter, during the patient encounter, and potentially afterward? Does it have to be limited to the cancer setting? Are there ways in which we can potentially engage primary care?
Additionally, what are the modalities in which we need to engage patients? How can we it feel less like work? One of the things that we need to think about is how to engage behavioral economics to make it feel easy, both for clinicians and patients. We need to make this not feel like homework, both for patients and for providers.
How can the patient-doctor experience be improved?
We need to be multifaceted. We need to recognize that our patients don’t all engage with patient portals. Many of them have smartphones, but levels of comfort vary. We also don’t want to exacerbate existing disparities by giving some patients a lot of opportunity to communicate with us and other patients the minimal opportunity to communicate with us.
Being able to use both smartphones and simple phones, being able to take advantage of opportunities to communicate in the waiting room, being able to sometimes rely on paper and pencil, and also making sure that we have culturally humble as well as linguistically diverse opportunities for collecting that data are really important.
Looking forward to future research on breast cancer
I’m really excited about the idea [of] precision oncology, which right now focuses on the kind of molecular milieu.
I think it also needs to think about the social milieu of the patients. How can precision oncology take into account the specifics of a patient’s social context and tailor their care to their lives, not just the cells in their body and the DNA of their tumor?
With the increased attention, the social determinants of health that COVID-19 really caused all of us to really focus on, I hope that there’s more research. I hope it’s sustained interest in making all of us believe that data that’s important to collect, act upon, and incorporate into our sense of what health should look like and how we can promote cures by incorporating the whole human into our care of the patient.
When Marsha Calloway-Campbell learned her husband was diagnosed with multiple myeloma, it turned her world upside down. But since his diagnosis, she’s rarely left his side, which at times takes a toll on her health. A myeloma caregiver, she’s learned how to find community support and advocate for her husband.
As the Program Director of HealthTree’s African American Multiple Myeloma initiative, Marsha has a passion for empowering others. She works to address the many obstacles African Americans face in myeloma diagnosis and treatment.
She voices how she took on the role of caregiver by taking on many burdens, how she made sure her husband was getting the best care and treatment, and how she got through the heavy emotions weighing on her.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
I’m a mother of three daughters and a grandmother of a grandson.
Professional, career-oriented, type A overachiever, a Christian, a believer, [and] a family woman.
Pre-diagnosis
[Our] household was crazy busy. [Out of the] three daughters, one dances competitively. We drove all over the US with her. Six years later, her sister came and 20 months later, another sister came.
The two younger ones were athletes. They played basketball, soccer, volleyball… We let them try everything. Then we got into travel ball. There were times that he would put one in the car to go to Atlanta. I would put another in the car to drive to Chicago.
We were gym rats. He was an athlete. I played ball in high school. It continued even into college for the two younger ones. They were student-athletes. That’s the synopsis of us before. Let’s call it 2016. And that’s when he started not to feel well and things started changing.
Initial myeloma symptoms
Armaray is a Black man. I say that because many Black men don’t go to the doctor, but he did. He got yearly physicals.
In 2016, he had gotten a physical, probably July-ish. August [and] September came. He started not to feel well. He started seeing other doctors. He was 57 at the time. They said he had a slightly enlarged prostate. They said, “Go to a urologist.”
Nothing was making him feel better. We get to Thanksgiving. He stayed in bed the whole weekend. We just knew something was going on. We went to his general doctor.
Right around Christmas is when I started getting real concern and pushing his primary care. He told me, and I remember it like it was yesterday, “It looks like Armaray has some compression fractions in his spine.” We’re like, “Why? Where is that coming from?” He had been an athlete and had had some surgery in 2015, but for an L4 and L5. Everything was fine.
He started wondering, Is it related to that? Still, no one knew. They said, “Okay, let’s get scans. Let’s do physical therapy.” Put him in physical therapy. “Let’s get that TENS unit for the pain.” We did all of that. Armaray trying to stretch his back out, thinking that will help.
New Year came and [on] January 12th, he almost collapsed as we were about to go to physical therapy. Instead of driving him to physical therapy, I drove him to the ER. Pulled up at the door, went in, and said, “I need a wheelchair,” and that was that’s the beginning of that story.
Within an hour and a half or so, I heard that ER doctor say, “Put him in room 10.” I go up and say, “Oh, good. You’re admitting him.” He just looked at me [and] said, “Oh, yeah.” I saw the concerned look. He said to me, “How long has he had kidney disease?” I said, “He doesn’t.” And he said, “Well, he does. His kidneys aren’t working.”
Armaray, even at 57, was still the athlete. He worked out four, five, or six times a week. [At] 6’2” and 195 pounds, [he] ate better than anybody in the household. He took care of himself, was not on any kind of medication, no blood pressure medication, nothing.
The nephrologist was called in and they ended up saying to me, “His creatinine is 14.” That didn’t mean anything to me. But she looked at me and said, “It should be under 1. I don’t know how he’s standing.” That’s when the ER doctor looked at me and said, “It might be multiple myeloma.”
I was like, “Okay, but what is that?” I remember saying inquisitively, “Is that cancer?” And he said, “Yeah, I’m not sure yet.” Then he tried to walk it back a little bit, but the nephrologist was standing there and she said to me, “One of my nurses has it.” She needed to let me know that it was not necessarily a death sentence.
She said, “We’ll figure all this out later. I have to get him into dialysis.” They worked their magic. They got that catheter put in and he was [put] in dialysis that night. We stayed in that hospital for one solid month because things were happening fast.
I slept in that hospital every single night, but two nights. I was afraid that if I left, a doctor was going to come in and tell him something else.
Realizing he had to be admitted to the hospital
[With] all of those things they were doing, I knew I had to call people. At that time, the oldest daughter was a senior in college, living in the city. The two were in school, one was a senior [and] one was a sophomore in the middle of basketball season.
I knew I had to tell my mom, who was in her 80s at the time. Keep in mind, she’s known him since he was 17. He’s like a son.
He was admitted bright and early the next morning. Here comes the nephrologist and her nurse practitioner. He looks even better from just that one dialysis session. Every single morning that we were in that hospital, the two of them showed up to say, “Here’s what’s going on.”
Imagine being in the hospital [for] a month. There were many doctors [and] many specialists. They would come in and give me, “Okay, he’s probably going to have a blank test today,” or “This is probably what’s going to happen.” It kept me [in the know].
My sorority sister gave me a binder that first week. She said, “Listen, it’s going to be a journey. Take this binder. Write everything down. When doctors come in, write down their names and who they are.” I did exactly what she told me. But things started to happen.
They would talk to me. “He needs this surgery.” His lesions were up and down his spine. He needed to have what’s called a kyphoplasty to shore up the spine to make it more stable. He was too sick to give consent so, of course, I had to do that.
We had the pulmonary doctor looking at him. We had a cardiologist looking at him. They finally confirmed the diagnosis and they started to treat him.
We thought he was getting better. [Then] his lungs started to bleed. It was a reaction to the treatment. Now I have pulmonary, cardiology, and hematology kind of pointing the finger at each other like, “What’s going on?” The hematologist was like, “It wasn’t what I did.” It was just all of that.
I sat in that hospital and with all of that going on, I could not leave. I slept in that hospital every single night, but two nights. I was afraid that if I left, a doctor was going to come in and tell him something else.
We knew nothing about multiple myeloma. It still didn’t make sense to me. All I knew was he was not getting better. Things are happening. I need somebody to please, please figure this out.
‘If it is that, here’s the deal. It is incurable, but it is treatable.’ I remember those words distinctly.
Diagnosis
Taking on the myeloma caregiver role
In the beginning, things were happening so fast that I couldn’t fall apart. I had to get the information. I didn’t cry when the doctor would tell me whatever. My crying took place at night when I’m on that couch in the hospital room [where] they made my bed.
He’s sleeping. I’m crying and praying. Prayer got me through. I would leave his room sometimes and sit out in the lobby area. I would call close friends. I have some close friends that are like sisters to me.
I called my own doctor, who’s a very close friend of mine. Doctors just tell you matter-of-factly and that’s how she did it. She was like, “Look, if it is that, here’s the deal. It is incurable, but it is treatable. It’s going to be rough in the beginning.” I remember those words distinctly.
I was having those kinds of conversations with my mom, with my sorority sisters, a friend from church, and my pastor was also dropping in. He would show up at the hospital [late] at night because he could always get in.
I was running on adrenaline. I was in survival mode and all I knew is what I had to do.
Getting help
My pastor was saying to me, “Marsha, you need to stop it. What are you doing? You are not Wonder Woman. You do so much for other people in our congregation. Let somebody help you. What do you need?”
I was exhausted by then. I had dropped 27 pounds or so in 4-5 weeks because I was running on adrenaline. I was in survival mode and all I knew is what I had to do. But it wasn’t good for me. That was how things were.
I knew that I needed to talk to somebody. I’m sitting in this hospital room. He can’t communicate with me. The kids weren’t in a position. I knew I had to reach out to my closest circle.
My village is amazing. What I got from them was talking. I would advise [you]: talk to somebody. Talk to somebody that you can trust, whomever that might be. Trust is a huge thing in our culture. We don’t always trust. That’s how I got through it.
I started to make notes to myself about the business [and] things that needed to be taken care of. That’s when the shift happened. Crying, sitting in that hospital, we had no idea how long we would be there. I knew that I had to take care of some things.
I’m a lawyer. I have been for 37 years. I also have a market research consulting business. I used to work at Procter & Gamble when I was in law school. Meanwhile, I’m sitting in a hospital room, thinking I have a mortgage to pay.
Financially, I had to make sure we were good. But I also knew that there were things like disability. At some point, the diagnosis came so I’m like, “I should probably check about disability.”
I had a fight with an insurance company that I won’t name because they started sending me letters saying you took him to this hospital and it is out of network. I’m like, “You must be kidding me. I don’t know if he’s going to walk out of here and you’re talking about out of network?” I won that fight because I took him to [the] ER and when you go to an ER, who cares about [the] network?
The doctors were cheering me on. I started establishing relationships with all of them. “Marsha, what’s going on today?” They were asking me about the business of it all. “Did you beat the insurance company yet?” “What about Medicare? What about Medicaid? What about disability?” That was the relationship and that was the environment in that room.
If I leave the hospital to come home to shower, to lay down for a minute, a nurse would have my phone number and would promise to call me if anything went down in that hospital room.
My pastor was saying to me, ‘Marsha, you need to stop it. What are you doing? You are not Wonder Woman. You do so much for other people in our congregation. Let somebody help you. What do you need?’
Reaction to the diagnosis as a myeloma care partner
I decided that I have to be part of this medical team.
As lesions were up and down his spine, it affected his entire body. He couldn’t even move his arms. He couldn’t lift them. [On] the hospital bed, he was more comfortable with pillows under each of his elbows. But I had to do the lifting. At times, the nurses wanted to, but they were not gentle enough for me so I did that.
That’s when advocacy started for me. When the doctors would come in, I would connect the dots for them because [there were] so many of them.
Talk to somebody that you can trust, whomever that might be. Trust is a huge thing in our culture. We don’t always trust.
Treatment
The doctors said to me, “We want to start treatment,” which they did, and that was the treatment he was allergic to. It was two shots that I remember that nurse coming in one shot one week, came back, and gave a shot the next week. Then his lungs started bleeding. They figured out that’s what it was.
I have to say that those two shots knocked much of those bad cells out tremendously. There’s always a good and a bad. I’m thankful because it knocked the M protein way down, but they had to stop it.
He had to stop all treatment for some months until his lungs got clear and they figured it out. But the doctor said, “Here’s what can happen. We need to treat him. It could be we’ll never give him that again, but it could be pills.” My big question was always: is it chemotherapy?
They were throwing around the word “immunotherapy” and they had to explain that to me. When they started treatment again, they did start him on a regimen of some of the therapies, the pills.
I had to be very careful with those. Those things were scary. When I came home, they were like, “Don’t touch them, and don’t let anybody who might be pregnant or would get pregnant in the future touch them.”
Pretty early, they started talking to us about a stem cell transplant. He was diagnosed [on] January 17. By March 18, he had a stem cell transplant.
Making medical decisions
The decision was pretty much mine. I share it with him as much as I could, but I didn’t want to burden him with anything. I needed him to concentrate on getting well.
I said, “Listen. He’s not going to worry about anything. He’s not going to worry about finances. He’s not going to worry about this treatment. I’ll tell him what he needs to know.”
Role as care partner post-transplant
Love the team that we worked with. We met a lot beforehand.
He stayed in a wheelchair for a while. He had to learn to walk all over again. But by the time [of] his transplant, he was walking again.
I would take him to the doctor and they explained exactly what was going to happen. “We have to collect those cells. We have to go in the hospital then we’re going to give him this heavy dose of chemo and all of his numbers are going to bottom out.”
That transplant was tough, but he did it. God brought him through that. It was hard. It happened exactly like they told us.
I will say I thank God for that transplant. Put him in complete response. There’s no spike detection, no protein detection. He gets a check every month.
Just a multitude of emotions. It’s a journey. It’s up and down. We’re hopeful.
That transplant was tough, but he did it. God brought him through that. It was hard.
Advocacy
What was the shift for you?
My husband started getting better. That was when it switched in my mind. You can be an advocate for other people because home is taken care of to a degree. Things have settled down. You need to give back.
The advocacy that I do now is the “give back” part. I never want anyone to be caught off guard [by] multiple myeloma. I know there are a lot of other things out there to be caught off guard about, but for me, it’s multiple myeloma.
If you know what it is, know enough to ask your doctor what it is, that is what I’m trying to do. I share with people what it’s about.
Once you are taking care of someone with myeloma, be their advocate because it’s a journey. It can be challenging at times so they need somebody.
We are often diagnosed with low risk. However, we’re dying more.
Learning more about multiple myeloma
In the beginning, I didn’t want to know the details about the disease, let alone how it affects anybody. I just did not. At some point, I decided [I] need to know.
I happened across HealthTree and other organizations that had information about myeloma. What I learned was that Blacks are predisposed to the diagnosis two to three times more likely than Caucasians to be diagnosed with multiple myeloma.
Honestly, my reaction was, “Of course, we are, like other stuff, like everything else.” That was a turning point for me.
The other thing I learned was more men than women are usually diagnosed. I learned that African Americans are, on average, four to five years younger being diagnosed.
The thing that really got me was that African Americans quite often have lower-risk genetic myeloma. There are lots of kinds — low risk, high risk. We are often diagnosed with low risk. However, we’re dying more.
The doctors are saying you’re diagnosed with low risk, more likely, if — and that is the operative word, if — you can receive equitable treatment — the treatment that’s best for you, just like Caucasians would receive the treatment that’s best for them — your outcomes could be better.
Then we’re into the whole health equity, disparities, and inequities space. When I look for people to collaborate with, I’m looking for people in those spaces because those organizations and those people get it. If we could just get equitable treatment, we could have better outcomes.
Now I want to be clear. I want everyone to have great outcomes, but I also want African Americans to have outcomes that could be greater because we’re getting the same care or equitable care.
It goes back to awareness. We don’t know there’s such a thing so that’s where it starts.
I’m doing a campaign now. “Doctor, could this be multiple myeloma?” If I could teach everybody [that] if you’re not figuring out what the diagnosis is, you don’t know what’s wrong, [and] you have these symptoms, to say to your doc, “Doctor, could it be multiple myeloma?” Because then the testing could start.
The first thing is we just don’t know about it so we’re not aware of it. We’re not educated about it. But then even when you think about diagnosis, there [are] still these disparities.
Before a diagnosis, there are disparities because we’re not always taken seriously when we present our symptoms to a hospital, to a doctor, or to a nurse. Our complaints about what’s going on are sometimes minimized. We’re not heard. Testing is not being done proactively to figure out. That’s even before diagnosis.
Then after diagnosis, we have all these social determinants of health that are still there. We might live in an area where social socioeconomics [is] low. We might not live in an area where an academic cancer institution is. We may not have transportation to get to these academic centers. We may not know. We don’t get that influx of information. It can be all kinds of things.
Then when you talk about clinical trials for African Americans, I might not be in a financial situation [where] I can take off X number of weeks to travel to wherever to be in this trial. We might not have as simple as Internet in [our] homes.
Those are the things that I’ve learned. Myeloma is already a tough journey and now we have to add these kinds of inequities on top of it to try to get through myeloma.
I want everyone to have great outcomes, but I also want African Americans to have outcomes that could be greater because we’re getting the same care or equitable care.
Importance of testing
It’s huge. Those are difficult medical things. Some stuff still just kind of goes over my head and I’m just like, “Oh, I can’t even understand that.” But what I do know is: ask. Know enough. For instance, know the common signs and symptoms.
You get your blood work done. It could be high calcium, there could be renal dysfunction so your kidney numbers might not be right, you might be anemic, and you could have bone pain. Those are the big ones. The acronym for that is C.R.A.B.
Know enough about that that if you’re going through something, you ask your doctor. “Doctor, could it be multiple myeloma? Can you test me for it?” You don’t even have to know what the tests are.
Here’s one thing that happens in our community. Everybody Black is told that we’re anemic. At some point, all five of us in our house have been told that we’re anemic. And I heard one of the Black myeloma specialists say, “We’re not anemic just because we’re Black. We’re not anemic because we have this melanin in our skin.”
Push back on your doctor because it could be something very simple — you need to take iron pills — or it could be something very serious — like myeloma.
That’s what I say to people. You don’t have to be a doctor. You don’t have to know every single thing but ask questions, demand time to be heard, and push for testing.
I always say to people who are then diagnosed: have somebody go to appointments with you or somebody to be there for you [to] take notes because you can’t get everything. I automatically take notes because that’s what I do, but not everybody does that. You can even take notes on your phone. There has to be a level of self-advocacy in this space that will serve you well.
Myeloma is already a tough journey and now we have to add these kinds of inequities on top of it to try to get through myeloma.
Distrust of the medical system
There’s distrust for good reasons. When I think about my grandparents, that generation was like, “Absolutely not. You will not use me as a guinea pig.” Those were the words because there were situations where Blacks were not done right. We lost lives and it was just a terrible situation.
Those events are in history. We know what they are. It wasn’t even done in a manner that tried to make Blacks feel like we were trying to do the right thing. It just was not right.
Then when I look at my mom’s generation, she still has a lot of distrust. “I’m not sure what these doctors are doing.” You look at my generation, it’s carried down. It’s even carried down when I look at my kids.
Now, I think it’s getting better as we go down the chain. But it’s still very real.
You don’t have to know every single thing but ask questions, demand time to be heard, and push for testing.
Importance of having family conversations
[In] the Black community, we don’t always openly share. It’s not because we don’t want to help our families. I’m thinking about my generation. We were taught that what goes on in our household stays in this household. You will not go out of this household talking about what goes on.
When my husband got sick, my first go-to was we will not play this out [on] social media. Even my generation, that’s what I think about. That can be a concern in the Black community because we absolutely need to share, especially with our immediate families.
I just say to families: share as much as you’re comfortable with. Send this brochure out to your circle. It’s about myeloma. Just share that. You don’t have to share anything about [yourself], personally, but share the information.
Words of advice
This is the work that just brings me joy. I’ve never shared information with people. They thanked me and hugged me.
When I think about [my] career, I’ve talked to a lot of people. I run my businesses. I would have to share about my business. “Come to me. As a lawyer, I can do this for you. I can do that for you.”
Although I was helping people, it pales in comparison to [saying] to someone, “Have you ever heard of multiple myeloma?” “No. What is it?” And I tell them and they’re like, “Ooh. Is there a test? Can I get screened? What do I need to know about it?” That brings me joy that I feel like I’m impacting lives one at a time.
As I look at other people who are doing the same thing and other organizations who are doing the same thing, I’m like, “Yeah, this is the important work.”
I have to thank my family and my close circle. Especially, my family, I can’t do what I do without them. I’m still working my job. My consulting and practice are there for me when I need them. My close circle, that village, is always there.
Barbara Kivowitz, Caregiver Expert & Author “A critical ingredient we need throughout our lives in all circumstances is hope. Hope can exist and persist even when a cure is not possible. You can attach hope to anything.”...
Multiple Myeloma: How Your Race and Age Can Affect Diagnoses and Treatment
Valarie Traynham
Multiple myeloma is the most common blood cancer among Black patients in the U.S., but many of those patients have an entirely different experience.
Studies show that Black patients respond better to newer treatments but are still twice as likely to die from the disease.
Patient advocate Valarie Traynham speaks with Shakira Grant, MBBS, of the UNC Medical Center. They discuss the barriers many Black patients face, how it impacts their care, and what can be done to help improve their outcomes.
Newly diagnosed patients [need] someone [who] they can ask questions [and] find out information and where to go for good relevant resources.
Valarie Traynham
Introduction
Valarie Traynham: I was diagnosed with multiple myeloma in 2015. Being a patient advocate, I want to be able to guide others through the process. When I was diagnosed, I did not have someone to go to and I think that’s very important. Newly diagnosed patients [need] someone [who] they can ask questions [and] find out information and where to go for good relevant resources.
I’m just so excited at the work that Dr. Grant is doing because it’s much needed. It’s an area that needs focus and she’s doing a wonderful job [of] getting that focus out there.
She focuses on a population of patients in the myeloma world that oftentimes [is] overlooked. It’s very important for that population of patients to be looked at and cared for and really understand what they are going through.
Dr. Grant is from the University of North Carolina and she focuses on geriatric multiple myeloma, health, and research.
Unfortunately, because multiple myeloma is also a disease that impacts older adults, we see this compounding effect, especially for Black older adults with multiple myeloma.
Dr. Shakira Grant
Dr. Shakira Grant: I’m primarily here to talk a little bit about our research and how this fits into sharing stories of patients and caregivers, which our team is really passionate about.
What really drew me to this type of work was this love for trying to bridge this gap in terms of the disparities that we see existing within not only outcomes but also survival for Black and white patients with multiple myeloma.
Unfortunately, because multiple myeloma is also a disease that impacts older adults, we see this compounding effect, especially for older Black adults with multiple myeloma. It’s really important for us as a research team to address some of these healthcare access barriers, which largely drive the disparate outcomes that we see in multiple myeloma.
We presented two studies. For the first one, we wanted to understand what barriers patients and their caregivers encounter when trying to seek care for multiple myeloma.
The top takeaway from that study is that many of our patients report that there’s really a delay in getting the diagnosis of myeloma and this results in them going to multiple specialists with their symptoms. Often, patients reported being dismissed by their doctors and being chalked up to just getting older and then repeating labs again in three months.
From this particular study, while we identified other barriers, including financial barriers, we do recognize that there is a need to focus on how we make the diagnosis, ensuring that patients are getting the diagnosis on time, which would allow them to enter into a care pathway where they can begin their treatment and minimize any chances that they will have any poor or adverse effects from multiple myeloma.
In terms of the other study, we wanted to look at factors that influence the participation in clinical trials for Black patients in particular. We did this by looking at the perspectives of patients with multiple myeloma as well as their hematologists.
One of our main takeaways from this is that the patient and their relationship with their doctor is really critical when trying to decide if a patient is going to be offered the opportunity to participate in a trial. Based on these findings, we do recognize that there is a need for more targeted interventions that address several steps in terms of communication between patients and their doctors to ensure that we have the best chances of offering clinical trials to a diverse patient population.
Many of our patients report that there’s really a delay in getting the diagnosis of myeloma and this results in them going to multiple specialists with their symptoms.
Dr. Grant
How do we get more diversity in clinical trials?
Valarie: I heard a lot about clinical trials. How can we get more minorities involved? What is that like for the older population that you see in the clinic?
Dr. Grant: Overall, when we think about increasing representation in clinical trials, we are coming up against two compounding factors. One is the older adult and then it’s the older adult who also identifies as having Black race.
For me, in clinical practice, one of the things that we try to do is to not only look at [the] patient’s chronologic age, but we also look at the functional age of patients. How well are they able to do their activity and to get around day to day? I believe that [is] probably better to assess eligibility for these particular patients for clinical trials in terms of Black representation or increasing representation of minoritized populations.
It is important for us to realize that myeloma does tend to affect an older adult population. We cannot really distill out and think about age and race separately, but we really should be thinking about these two things together. Our efforts to increase representation should be geared towards the older adult population, as well as thinking about the racial, ethnic, and minoritized populations.
We cannot really distill out and think about age and race separately, but we really should be thinking about these two things together.
Dr. Grant
How would you advise older multiple myeloma patients to stay positive?
Valarie: For a newly diagnosed older patient, how would you advise them? [There’s] so much going on. They’re getting the diagnosis. They’re trying to make it to the clinic. How would you advise them to stay positive and look for the good in the situation that they’re facing?
Dr. Grant: The thing that is really important that I’ve seen come out not only [from] our research but in my own clinical practice is the need to have a social support system. In our study, we looked at informal caregivers who were oftentimes spouses and, in some cases, adult children.
I really do think that having that support when you’re first diagnosed is really critical because you have, in essence, [a] second set of ears, [a] second set of eyes to help you with the amount of information that you’re getting, scheduling, [and monitoring] any potential treatment-related side effects.
I think [it’s] really important for patients to also seek knowledge about multiple myeloma from credible resources. Read as much as possible what you can about this disease, about things that you can expect, and then come to your provider’s visit prepared with those questions ready.
Having that support when you’re first diagnosed is really critical because you have, in essence, [a] second set of ears, [a] second set of eyes to help you.
Dr. Grant
Ask [about] things like clinical trial participation, if your doctor hasn’t mentioned it. It’s really important for patients to take that first bold step and say, “I’ve read about clinical trials. Do you think this could be a potential option for me?”
This really moves into this idea that we want our patients to not only have a really great social support system but also to be empowered to be able to ask the questions that they need of their physicians without feeling fearful or intimidated.
Valarie: I’m so glad you said that because that is one thing that I always try to tell newly diagnosed patients as a patient advocate. Find reputable material. Find out everything that you can about the disease. Don’t be afraid of it. It’s something that you’re going to be living with indefinitely.
We want our patients to not only have a really great social support system but also to be empowered to be able to ask the questions that they need of their physicians without feeling fearful or intimidated.
Dr. Grant
How do you build medical trust in Black communities?
Valarie: We know that trust in the African-American community is a big deal and that’s what we are focusing [on], too: raise trust and build trust in the community. As a physician, what are some of the things that patients are mainly dealing with?
I was listening to something and they talked about words matter — how you talk to patients, understanding patients, words that you use, words that the patient uses, and understanding and gathering information. Tell me [about] your thoughts on that.
Dr. Grant: What we’ve seen in our studies time and time again is that there is this legacy of medical mistrust that has been brought on by past research events where Black patients were intentionally harmed by the research enterprise and so it takes quite a while to be able to reverse those effects.
Things that we’ve learned from talking to patients [and] caregivers that can help close that trust gap is really working on our communication style as physicians, making sure that we’re using empathic communication, [and] letting our patients see that beyond the doctor title, we also are real people with real lives and lived experiences.
Don’t be afraid to pull back that curtain sometimes and let patients see that that relationship between patients and providers really helps to build up trust.
Find reputable material. Find out everything that you can about the disease. Don’t be afraid of it. It’s something that you’re going to be living with indefinitely.
Valarie
I think of a particular quote from one of our studies where a patient said that it’s all about [the] relationship and if we need to build trust, we really need to be focused on the relationship. That particular participant went on to say that really they believe that the physicians could benefit from relationship-building training.
That really stuck with me because I recognized that trust is so difficult to address. These are some strategies that, as a physician, we can do to at least start to build that and close that potential gap.
When it comes time to think about the research, there are different strategies that our team [uses] to really help foster trust and to help engage Black participants in our study. Some of those strategies have been described in the literature, but really it’s about having a team that is representative of the population that we’re trying to engage and helping them realize the value of this research and why we need to do this, especially for the Black community.
Trust is so difficult to address. These are some strategies that, as a physician, we can do to at least start to build that and close that potential gap.
Dr. Grant
We need to recognize that access to healthcare is dependent on several steps. This includes the patient’s ability to perceive their need for healthcare. Then they need to be able to seek out those services, reach the services, pay for the services, and engage with their healthcare provider.
I would encourage patients: if you are experiencing symptoms you’re concerned about and you’re seeing your provider and you don’t think your provider is necessarily answering or addressing those questions, don’t be afraid to talk to somebody else. Talk to another provider and do some additional research and see if there is potentially another option for you to have your symptoms examined.
They have to think about [the] costs of medications but also when they’re coming to the cancer center, the cost of parking, the cost of gas… all these things are really additive for patients, especially when they’re on a fixed income. This idea about having to pay twice was centered around the need to pay for all of these other healthcare services while also attending to the high cost associated with paying for parking at the health center.
In terms of other economic impacts, things like parking, don’t be afraid to tell your provider, “This is challenging for me to pay for parking,” or, “I’m having challenges just paying for my medications.” Because honestly, sometimes the visit time is so short that we don’t always have the time to ask if you are having financial concerns. We don’t want that. These financial challenges are a limitation to you getting your care on time.
Don’t be afraid to talk to your providers if you have concerns. Make those concerns known… If you’re having financial challenges, continue to share those concerns and ask about available resources.
Dr. Grant
Barriers patients face that prevent their care
Valarie: How often do you have patients that [face financial limitations?]
Dr. Grant: We actually see this, in my practice especially, quite often. It’s not uncommon at all for patients to be concerned about the cost of parking. Patients would express concerns about their ability to pay for parking. Sometimes it’s a bit of a challenge knowing what to do in those scenarios.
There are some efforts now at our cancer center to try to provide more accessible parking in terms of financial costs and reducing the cost of that, but it’s not always widely available to patients.
Don’t be afraid to talk to your providers if you have concerns. Make those concerns known. That goes from even when you’re first presenting, before you’re diagnosed and you’re concerned about it, keep sharing those concerns with your provider.
If you’re having financial challenges, continue to share those concerns and ask about available resources. There are more resources out there than sometimes patients may actually think or may actually have knowledge about.
Conclusion
Valarie: Thank you for joining us today and going over all of this. It’s so important what you do in the field of myeloma.
What we’re dealing with is meaningful. It’s life-impacting so it’s very important that you understand if you’re not being treated right or you feel that something is not right, say something because it’s not okay.
You have the right as a patient to have something done about that. You are in control of your health. Don’t settle. Without you, it would just be a missing piece.
Dr. Grant: Thank you for having me.
If you’re not being treated right or you feel that something is not right, say something because it’s not okay. You have the right as a patient to have something done about that. You are in control of your health. Don’t settle.
Valarie
Special thanks again to AbbVie for its support of our independent patient education content. The Patient Story retains full editorial control.
