Tag Archive for: Latina

Un diagnóstico de linfoma difuso de células B grandes: el viaje de un paciente

Un diagnóstico de linfoma difuso de células B grandes: el viaje de un paciente from Patient Empowerment Network on Vimeo.

Después de que los síntomas comenzaron con sudores nocturnos y dolor de estómago, a Tina se le diagnosticó linfoma difuso de células B grandes (DLBCL). Ella comparte algunas de las cosas que ha aprendido en su viaje DLBCL, que incluyen: “Tenga cuidado donde busca información sobre el cáncer” y la importancia de contarle a un círculo de seres queridos de confianza sobre su diagnóstico. Vea la historia de DLBCL de Tina.

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Transcript:

Mi nombre es Tina y me diagnosticaron linfoma difuso de células B grandes a finales de los cuarenta. Por desgracia, me diagnosticaron erróneamente dos veces antes de que me hicieran suficientes pruebas para diagnosticarme de DLBCL y nunca había conocido a nadie con cáncer cuando recibí el diagnóstico.

Mis síntomas empezaron con sudores nocturnos y dolor de estómago. Pensé que mis sudores nocturnos podían ser el inicio de la perimenopausia, así que mi médico me recetó un medicamento contra el reflujo ácido para el dolor de estómago.

Luego, el dolor se trasladó a uno de mis costados, en mi cintura. El médico de urgencias me diagnosticó gases y, un par de semanas más tarde, otro médico de una clínica me volvió a diagnosticar gases. Cuando insistí en que no tenía gases, el médico simplemente lo descartó como una distensión muscular.

Un par de meses más tarde, vi a otra doctora por mis dolores y decidió hacerme un análisis de sangre que arrojó resultados preocupantes. También me hizo otras pruebas por vía rápida, incluyendo una tomografía computarizada y una biopsia. Aunque me sorprendió el diagnóstico, también me sentí aliviada de saber por fin qué me estaba pasando. También tuve la suerte de contar con una oncóloga excelente que fue la combinación perfecta de apoyo y claridad sobre el tratamiento y las perspectivas del linfoma B difuso de células grandes.

Aunque el DLBCL es un cáncer agresivo, la doctora señaló que es muy curable. Recibí seis ciclos de quimioterapia junto con epoetina alfa (Procrit) para prevenir la anemia. Desde que terminé el tratamiento, me encuentro bien y me he sometido a exploraciones periódicas que han salido bien. Me siento afortunada y me complace compartir mi experiencia con el cáncer para ayudar a otros pacientes y a sus seres queridos.

Algunas de las cosas que he aprendido en mi viaje por el linfoma B difuso de células grandes son:

  • Empodérate haciendo preguntas a sus médicos sobre las opciones de tratamiento y lo que puede esperar antes, durante y después del mismo.
  • Ten cuidado con dónde buscas información sobre el cáncer, ya que algunas fuentes pueden ser demasiado negativas sobre tus posibilidades de supervivencia. Utiliza recursos fiables como Patient Empowerment Network, The Lymphoma Research Foundation y The Leukemia & Lymphoma Society. 
  • Infórmate sobre las opciones de ensayos clínicos. Puede haber programas que te ayuden con los gastos de viaje, alojamiento y otros gastos no cubiertos.
  • No sientas que tienes que contarle a todo el mundo sobre tu cáncer. Puede contárselo sólo a aquellas personas con las que se sienta cómodo, aunque sean pocas.
  • Escucha a tu intuición y a tu cuerpo. Yo sabía que algo iba muy mal, pero los médicos me ignoraron durante meses antes del diagnóstico.

Estas acciones fueron clave para mantenerme en mi camino hacia el empoderamiento.


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A Diffuse Large B-Cell Lymphoma Diagnosis: One Patient’s Journey

A Diffuse Large B-Cell Lymphoma Diagnosis: One Patient’s Journey from Patient Empowerment Network on Vimeo.

After symptoms began with night sweats and pain in her stomach, Tina was diagnosed with diffuse large B-cell lymphoma (DLBCL). She shares some of the things she has learned on her DLBCL journey that include:” Be careful about where you search for cancer information” and the importance of telling a trusted circle of loved ones about your diagnosis. Watch Tina’s DLBCL story.

See More from [ACT]IVATED DLBCL

Download Resource Guide

Download Resource Guide en español

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What Promising Treatments Are Available for Diffuse Large B-Cell Lymphoma Patients

What Promising Treatments Are Available for Diffuse Large B-Cell Lymphoma Patients

How Can Patients Overcome Noted Diffuse Large B-Cell Lymphoma Disparities

How Can Patients Overcome Noted Diffuse Large B-Cell Lymphoma Disparities

Will Newer Therapies Be Curative for Diffuse Large B Cell Lymphoma Patients

Will Newer Therapies Be Curative for Diffuse Large B Cell Lymphoma Patients


Transcript:

My name is Tina, and I was diagnosed in my late-40s with diffuse large B-cell lymphoma. Unfortunately, I was misdiagnosed twice before I received enough testing to be diagnosed with DLBCL and I’d never known anyone with cancer when I received my diagnosis.

My symptoms began with night sweats and pain in my stomach. I thought my night sweats could be the start of perimenopause, so my doctor prescribed an acid reflux medication for the stomach pain. 

Next, the pain moved to one of my sides at my waist. The doctor at urgent care diagnosed the pain as gas, and then a different doctor at a clinic diagnosed me with gas again a couple weeks later. When I insisted that I wasn’t experiencing gas, the doctor simply dismissed it as a muscle strain.

A couple months later, I saw another doctor about my pain, and she decided to run a blood test that came back with concerning results. She also fast-tracked some other tests for me including CT scans and then a biopsy. Even though I was shocked with my diagnosis, I also felt relieved to finally know what was wrong. I was also fortunate to get an excellent oncologist who was the perfect combination of supportiveness while also being clear about my diffuse large B-cell lymphoma treatment and outlook. 

Even though DLBCL is an aggressive cancer, she pointed out that DLBCL is highly curable. I received six rounds of chemo along with epoetin alpha (Procrit) that prevented anemia. Since I finished treatment, I’ve been feeling good and have received regular scans that have all been clear. I feel fortunate and am happy to share my cancer journey to help other patients and their loved ones.

Some of the things I’ve learned on my diffuse large B-cell lymphoma journey include:

  • Empower yourself by asking your doctors questions about treatment options and what to expect before, during, and after treatment.
  • Be careful about where you search for cancer information, since some sources may be overly negative about your chance of survival. Use credible sources like Patient Empowerment Network, The Lymphoma Research Foundation and The Leukemia & Lymphoma Society. 
  • Learn about clinical trial options. There may be programs that will help you with travel, lodging, and other uncovered expenses.
  • Don’t feel like you need to tell everyone about your cancer. You can tell only those you feel comfortable sharing with even if that’s only a small number of people.
  • Listen to your intuition and body. I knew something was seriously wrong but was dismissed by my doctors for months before my diagnosis.

These actions were key for staying on my path to empowerment.


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How Can BIPOC Breast Cancer Patients Overcome Health Disparities?

How Can BIPOC Breast Cancer Patients Overcome Health Disparities? from Patient Empowerment Network on Vimeo.

How can BIPOC breast cancer patients help overcome health disparities? Experts Dr. Nicole Rochester and Dr. Regina Hampton share ways to be more proactive with breast cancer screening, in interaction with healthcare providers, and in sharing breast cancer stories.

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How Can Breast Cancer Patients Connect to Patient-Centered Care?


Transcript:

Dr. Nicole Rochester:

You alluded to the different care sometimes that patients of color receive. So I want to shift and talk about racial and ethnic inequities, and unfortunately, we know that with every other illness, unfortunately similarly with breast cancer, there’s a long history of women, particularly in BIPOC communities receiving disparate care, a lot of times they are not offered some of these treatment options, maybe they don’t have access to some of the breast cancer centers, so can you just share some information about some of the disparities that we see, in breast cancer? And then I’m curious to know how you specifically address them being a Black woman breast surgeon 

Dr. Regina Hampton: 

So, one of the things to know is that as African American women, we tend to get breast cancer at younger ages, and not a lot of physicians know and can recognize that, so it is very important that when a young African American woman has a breast complaint that that’s taken seriously and worked up to make sure that we’re not missing a breast cancer. So, I think it’s important again to have those conversations talking about family history, because we don’t talk about family history, in our families. I’ve had a patient just come in and say, Yeah, well, grandma had a breast missing, no no nobody said cancer, well they probably should’ve said cancer, so we’ve gotta have those health conversations in our family, so I think it’s important for patients to really be their advocate because many times these young women are dismissed and thought, “Oh, you’re too young,” and I’ve even been kind of fooled myself by some of the young women, so knowing that younger women get breast cancer at younger ages, if you think something is going on, you need to really take that seriously. And then I think it’s also talking about the options, we do tend to get a more aggressive form of breast cancer, but the treatments have changed, and while chemotherapy may be indicated for many patients, it’s not for all patients, and so really taking that time to understand what all the options are, “Well, why are you recommending chemotherapy? What’s going to be the benefit for me? What’s the survival benefit for me? What are the side effects? How this going to affect my sex life? How is this going to affect me and my relationship with my children, with work?” 

So really just asking all of those important questions, I think it’s also important to ask for what you want. I don’t think we speak up enough, there was actually a study that I was looking out that shows that we don’t get offered reconstruction as often as our white counterparts. The disparity is about 24 percent, and that’s really huge. That’s important. So, we really need to ask those questions and to know, well, maybe I can’t get reconstruction at this juncture, but can I get it in the future, there’s a federal law that covers all of those for all breast cancer patients, no matter what color you are, so again, it’s just asking those questions. Sometimes taking somebody and having somebody else ask the questions can be helpful. 

Dr. Nicole Rochester: 

Yeah, making somebody else the bad guy, so to speak. Absolutely, any time I have a conversation about health disparities and health and inequities, honestly, I get a little angry inside because for you to share that statistic that we’re not as often offered reconstructive surgery, that is a huge part of our identity as women. Our appearance, our self-esteem, and I just want to point out for our viewers that unfortunately, as Dr. Hampton has stated. A lot of times, these disparities are sometimes due to lack of knowledge, so Dr. Hampton mentioned that Black women tend to get breast cancer at a younger age, and you need to know that if you’re seeing a breast surgeon or even an internist or oncologist who is not a person of color or who is not up-to-date on that information, they may not know those statistics, but unfortunately, there also is this bias that you’ve talked about as well, and we know that we all have bias, we are exposed regularly to negative images, negative stereotypes of African Americans, Latino, Native Americans, and doctors are not immune to that bias and we carry those biases into the exam room, and so for people of color with breast cancer, it is particularly important that you follow these recommendations that Dr. Hampton has mentioned, and I just love that really all of them center around advocacy and speaking up for yourself and standing up for yourself. Are there any other things, Dr. Hampton in closing that you can think of specifically for patients of color, things that they can do to really protect themselves from these inequities that exist in breast cancer care. 

 Dr. Regina Hampton: 

I think we have to really start at the beginning and being more proactive about our screening, making sure that we’re getting those mammograms, making sure that when we get a mammogram, we’re asking for the best mammogram if there’s new 3D technology, making sure that you get that so that we can find things at an earlier stage, and I think also we have to call it kind of throw out all the myths. We got to let them go people, we got to let them go. And I know there have been some challenges and we have had some historical issues, I think Dr. Rochester and I both agree and acknowledge that, but at some point, we have to move forward and be more proactive and really knock down some of those barriers and not let some of those old things that happen hold us back from the new technologies that are available. So, I think the good thing, we’re in a day and age where most early-stage cancers are not a death sentence and we find them early, we can treat them early, and I think we have to just talk in our community, I’m always amazed that many Black women still don’t share their stories. 

So, you have women who are in the same circle and don’t realize that the person two seats down went through breast cancer, and you all still go to coffee, and she didn’t share her story. And now you’re facing breast cancer, you’re thinking, “Wow, I’m just alone.” And so, I think we have to really share that, not only in our families, but we’ve got to share it with our sisters, because you never know who you’re going to be helping through that journey. I find it interesting that there’s really a difference between how African American women take a breast cancer diagnosis and white women take a breast cancer diagnosis, and we’re getting ready to really look at this, and I’m really excited about it because I really want to know what is it and why is there such a difference? But I think we have to not hide, we have to really share our stories, and sharing your story is going to help somebody else. 

Dr. Nicole Rochester: 

Absolutely, I think part of the hiding and even what you mentioned about the family history not being shared as part of this kind of myth that we have to be strong or that Black women are invincible and that we can’t be vulnerable. And you’re absolutely right, we need to talk about this in our circles, we need to talk about it with our daughters or nieces, all of our family members, so that we’re all educated and empowered.  

Dr. Regina Hampton: 

It’s funny you mentioned that because that’s one of the first things I tell patients to do. I say, “Look, you’ve got to let other people take over, because we’ve got work to do, and kids have got to eat peanut butter and jelly, they’ve just got to eat some peanut butter and jelly, they’ll be all right, but you’ve got to put yourself first.” And I think if we put ourselves first, put our screenings first, we’re good about getting our kids, getting them to their health appointments, we as women have got to get ourselves to our health appointments and put ourselves first, so that we can be there for our families. 

Dr. Nicole Rochester: 

You just reminded me of something we as women, are really good at taking care of our kids and our spouses and other members of our family, but then we do that at the expense of ourselves, and I can say when I used to practice as a pediatrician, we were trained to address postpartum moms, and people realize early on that, hey, okay, they may not have their postpartum visit for six weeks, but they’re taking that baby to the pediatrician in two or three days, and so we would talk with the postpartum moms about screening them for depression and things of that nature, but I never thought about…you literally just gave me this idea that maybe pediatricians should also be checking in with our patients’ moms and asking them about their screening, I don’t know if they would be offended by that, but it truly takes a village, and so maybe we need to be encouraging the parents of our patients and making sure that they’re getting their regular screenings and their health maintenance as well, because you’re right, we will look out for the babies, and we will put ourselves on that back burner every single time.