Breast Cancer

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discussion forums.

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Hello Natalieaster, Welcome to Grace. I hope your stay with us is short, but we are always here to answer, listen and share.

Since your doctor didn't seem too worried...

Foro en Español Sobre Terapias Dirigidas para el Cáncer de Pulmón

2025 HPV Advances Patient Education Program-Sponsored by Merck

August 9, 2025, Foro de Pacientes sobre Terapias Dirigidas en Cáncer de Pulmón 2025 (Webinar en Vivo)

2024-2025 PEA Program Videos-Thank You Exelixis and Janssen for Your Sponsorship

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JOIN THE CONVERSATION

another question about Tagrisso not working and alternatives

Hello Natalieaster, Welcome…

By JanineT GRACE … on Mon, 09/22/2025 - 14:30

The information you share is…

By LibbieRohan on Sun, 09/21/2025 - 20:55

Hi Mel, I'm sorry for the…

By JanineT GRACE … on Thu, 08/28/2025 - 11:26

Clinical Trials Storytelling Application - Downloadable Document

Hello.
I know this post is…

By mel on Wed, 08/27/2025 - 08:20

Applications are now closed!... Be a Part of the Patient Perspectives: Clinical Trials Storytelling Program - 2024-25

dbrock — Wed, 04 Sep 2024 19:58:52 +0000

Applications are now closed!... Be a Part of the Patient Perspectives: Clinical Trials Storytelling Program - 2024-25 dbrock Wed, 09/04/2024 - 12:58

Article and Video CATEGORIES

Cancer Journey

Applications are now closed!... Be a Part of the Patient Perspectives: Clinical Trials Storytelling Program - 2024-25

dbrock

Wed, 09/04/2024 - 12:58

Applications have closed for this program. Keep your eye on next year to be a part of this paid program - Patient Perspectives: Clinical Trials Experiences - Storytelling Program - 2024-25

Author

Denise Brock

Tell your story and help us help others!

The application process is now closed. Thank you for your interest!

GRACE Patient Perspectives: Clinical Trials Storytelling Program - 2024-25 - Overview

The goal of this Patient Perspectives program is to give a voice to those who have experience in participating in a clinical trial for a cancer diagnosis. By telling your story, you can educate others on the process, discuss your difficulties, and share your accomplishments. Your voice helps to educate and advocate for others who are in or who may be considering a clinical trial. This is a paid opportunity and you will receive a stipend for your participation!

Storytelling will take the form of written, video, and/or audio/podcast to reach the largest audience. GRACE staff will coach and support participants on digital outreach and advocacy.

Who is GRACE?

Benefits of Participation

Participants will receive a stipend, training in communication and media platforms and a tech ‘package’.

Expectations

Participants will work with GRACE to develop program formats and production and will present a proposal based on their experience in a clinical trial program. Participants will be expected to attend (via ZOOM) regular meetings throughout the program year to learn and to discuss their ideas. A minimum of three (3) media productions per participant will be expected by the end of the program.

Ideal Candidates

Applicants should have a particular interest and passion for communications, sharing experiences, storytelling, and patient education. People looking for a way to give back to the cancer community, who exhibit strong written and oral communication skills coupled with a passion for sharing experiences to educate and advocate will thrive in this program. GRACE will guide them through boosting their voice to advocate for themselves and others in the cancer community.

2024 is our fourth year for this program, and we are excited to continue to generate a platform for patient advocacy and sharing patient education in the area of clinical trials.

The application due date has been extended to October 25, 2024 for consideration. Applicants will be contacted by November 8, 2024, with information regarding acceptance and the next steps.

To apply online please click here OR download the above attached pdf form and email it to dbrock@cancerGRACE.org.

Any questions, please contact Denise Brock at dbrock@cancergrace.org or 888-501-1025 x2.

Video Language

Please feel free to offer comments and raise questions in our
discussion forums.

Online Community

Hello Natalieaster, Welcome to Grace. I hope your stay with us is short, but we are always here to answer, listen and share.

Since your doctor didn't seem too worried...

Foro en Español Sobre Terapias Dirigidas para el Cáncer de Pulmón

2025 HPV Advances Patient Education Program-Sponsored by Merck

August 9, 2025, Foro de Pacientes sobre Terapias Dirigidas en Cáncer de Pulmón 2025 (Webinar en Vivo)

2024-2025 PEA Program Videos-Thank You Exelixis and Janssen for Your Sponsorship

Recent Comments

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another question about Tagrisso not working and alternatives

Hello Natalieaster, Welcome…

By JanineT GRACE … on Mon, 09/22/2025 - 14:30

The information you share is…

By LibbieRohan on Sun, 09/21/2025 - 20:55

Hi Mel, I'm sorry for the…

By JanineT GRACE … on Thu, 08/28/2025 - 11:26

Hello.
I know this post is…

By mel on Wed, 08/27/2025 - 08:20

Early Detection: The Importance of Testing in Breast, Lung, and Skin Cancer

JanineT GRACE Community Outreach — Mon, 25 Mar 2024 16:17:33 +0000

Early Detection: The Importance of Testing in Breast, Lung, and Skin Cancer JanineT GRACE Community Outreach

Posts:710

GRACE Community Outreach Team

Mon, 03/25/2024 - 09:17

JanineT GRACE Community Outreach

Posts:710

GRACE Community Outreach Team

Hello,

Today I'd like to share a new playlist on our youtube channel, Importance of Testing. These videos cover prevention, screening, and early detection of skin, lung and breast cancers.

To further your understanding and that of others, you are always welcome to post questions, thoughts, replies, and experiences.

Be safe,

Janine

I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.

Forums

General Discussion!

The Importance of Testing 2023

dbrock — Mon, 25 Mar 2024 15:27:03 +0000

The Importance of Testing 2023 dbrock Mon, 03/25/2024 - 08:27

Article and Video CATEGORIES

Cancer Journey

The Importance of Testing 2023

dbrock

Mon, 03/25/2024 - 08:27

Oncologists and patient advocates discuss the importance of early detection and treatment across cancer types, including skin, lung, and breast.

Author

Doug Micalizzi, MD, PhD - Guest Faculty

Drs. Meredith McKean, Dr. Doug Micalizzi and patient advocate and lung cancer survivor, Ivy Elkins, discuss the importance of early detection and treatment across cancer types, including skin, lung, and breast.

To watch the complete playlist click here.

Video Language

Please feel free to offer comments and raise questions in our
discussion forums.

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Hello Natalieaster, Welcome to Grace. I hope your stay with us is short, but we are always here to answer, listen and share.

Since your doctor didn't seem too worried...

Foro en Español Sobre Terapias Dirigidas para el Cáncer de Pulmón

2025 HPV Advances Patient Education Program-Sponsored by Merck

August 9, 2025, Foro de Pacientes sobre Terapias Dirigidas en Cáncer de Pulmón 2025 (Webinar en Vivo)

2024-2025 PEA Program Videos-Thank You Exelixis and Janssen for Your Sponsorship

Recent Comments

JOIN THE CONVERSATION

another question about Tagrisso not working and alternatives

Hello Natalieaster, Welcome…

By JanineT GRACE … on Mon, 09/22/2025 - 14:30

The information you share is…

By LibbieRohan on Sun, 09/21/2025 - 20:55

Hi Mel, I'm sorry for the…

By JanineT GRACE … on Thu, 08/28/2025 - 11:26

2023-24 GRACE Patient Perspectives_ Clinical Trials Experiences - Program Application update.pdf

Hello.
I know this post is…

By mel on Wed, 08/27/2025 - 08:20

Please note! We have extended the application period - apply before July 15 to be a part of the Clinical Trials Experiences Through Storytelling - Patient Perspectives 2023-24 Program

dbrock — Wed, 05 Jul 2023 21:59:31 +0000

Please note! We have extended the application period - apply before July 15 to be a part of the Clinical Trials Experiences Through Storytelling - Patient Perspectives 2023-24 Program dbrock Wed, 07/05/2023 - 14:59

Article and Video CATEGORIES

Cancer Journey

Please note! We have extended the application period - apply before July 15 to be a part of the Clinical Trials Experiences Through Storytelling - Patient Perspectives 2023-24 Program

dbrock

Wed, 07/05/2023 - 14:59

We have extended the application period for this program! Apply before July 15 to be considered for participation in this paid program - 2023-24 Patient Perspectives Program - Clinical Trials Experiences Through Storytelling

Author

Denise Brock

Please note! We have extended the application deadline! Apply by July 15, 2023 to be considered!

We are excited to launch our third year of this program; tell your story and help us help others!

Apply Online Now for this paid opportunity to tell your story!

GRACE Patient Perspectives: Clinical Trials Experiences Storytelling Program Overview

The goal of this Patient Perspectives program is to give a voice to those who have experience in participating in a clinical trial for a cancer diagnosis. By telling your story, you can educate others on the process, discuss your difficulties and share your accomplishments. Your voice helps to educate and advocate for others who are in or who may be considering a clinical trial. This is a paid opportunity and you will receive a stipend for your participation!

Storytelling will take the form of written, video and/or audio/podcast to reach the largest audience. GRACE staff will coach and support participants on digital outreach and advocacy.

Who is GRACE?

Benefits of Participation

Applicants selected for this year’s program will work closely with GRACE staff to develop new educational content and learn new communication skills through the storytelling process.
Participants will receive training on digitally distributed content, social media and other platforms. Participants work will be highlighted and shared by GRACE, our network of established leaders in the oncology community, and GRACE board members with an array of interests and connections.

Participants will receive a stipend, training in communication and media platforms, and a tech ‘package’.

Expectations

Participants will work with GRACE to develop program formats and production and will present a proposal based on their experience in a clinical trial program. Participants will be expected to attend (via ZOOM) regular monthly meetings throughout the program year to learn and to discuss their ideas. A minimum of three (3) media productions per participant will be expected by the end of the program.

Ideal Candidates

Applicants should have a particular interest and passion for communications, sharing experiences, storytelling, and patient education. People looking for a way to give back to the cancer community, who exhibit strong written and oral communication skills coupled with a passion for sharing experiences in order to educate and advocate will thrive in this program. GRACE will guide them through boosting their voice to advocate for themselves and others in the cancer community.

2023 is our third year for this program, and we are excited to continue to generate a platform for patient advocacy and sharing patient education in the area of clinical trials.

All application forms must be submitted by July 15, 2023 for consideration. Applicants will be contacted by August 15, 2023, with information regarding acceptance and the next steps.

To apply online please click here OR download the above attached pdf form and email it to dbrock@cancerGRACE.org.

Any questions, please contact Denise Brock at dbrock@cancergrace.org or 888-501-1025 x2.

Video Language

Please feel free to offer comments and raise questions in our
discussion forums.

Online Community

Hello Natalieaster, Welcome to Grace. I hope your stay with us is short, but we are always here to answer, listen and share.

Since your doctor didn't seem too worried...

Foro en Español Sobre Terapias Dirigidas para el Cáncer de Pulmón

2025 HPV Advances Patient Education Program-Sponsored by Merck

August 9, 2025, Foro de Pacientes sobre Terapias Dirigidas en Cáncer de Pulmón 2025 (Webinar en Vivo)

2024-2025 PEA Program Videos-Thank You Exelixis and Janssen for Your Sponsorship

Recent Comments

JOIN THE CONVERSATION

another question about Tagrisso not working and alternatives

Hello Natalieaster, Welcome…

By JanineT GRACE … on Mon, 09/22/2025 - 14:30

The information you share is…

By LibbieRohan on Sun, 09/21/2025 - 20:55

Hi Mel, I'm sorry for the…

By JanineT GRACE … on Thu, 08/28/2025 - 11:26

Download Hardcopy Application Here

Hello.
I know this post is…

By mel on Wed, 08/27/2025 - 08:20

Apply Now! Be a Part of the Clinical Trials Experiences Through Storytelling - Patient Perspectives 2023-24 Program

dbrock — Fri, 19 May 2023 18:08:40 +0000

Apply Now! Be a Part of the Clinical Trials Experiences Through Storytelling - Patient Perspectives 2023-24 Program dbrock Fri, 05/19/2023 - 11:08

Article and Video CATEGORIES

Cancer Journey

Apply Now! Be a Part of the Clinical Trials Experiences Through Storytelling - Patient Perspectives 2023-24 Program

dbrock

Fri, 05/19/2023 - 11:08

Applications are now open to be a part of this paid program - 2023-24 Patient Perspectives Program - Clinical Trials Experiences Through Storytelling

Author

Denise Brock

We are excited to launch our third year of this program; tell your story and help us help others!

Apply Online Now for this paid opportunity to tell your story!

GRACE Patient Perspectives: Clinical Trials Experiences Storytelling Program Overview

The goal of this Patient Perspectives program is to give a voice to those who have experience in participating in a clinical trial for a cancer diagnosis. By telling your story, you can educate others on the process, discuss your difficulties and share your accomplishments. Your voice helps to educate and advocate for others who are in or who may be considering a clinical trial. This is a paid opportunity and you will receive a stipend for your participation!

Storytelling will take the form of written, video and/or audio/podcast to reach the largest audience. GRACE staff will coach and support participants on digital outreach and advocacy.

Who is GRACE?

Benefits of Participation

Applicants selected for this year’s program will work closely with GRACE staff to develop new educational content and learn new communication skills through the storytelling process.
Participants will receive training on digitally distributed content, social media and other platforms. Participants work will be highlighted and shared by GRACE, our network of established leaders in the oncology community, and GRACE board members with an array of interests and connections.

Participants will receive a stipend, training in communication and media platforms, and a tech ‘package’.

Expectations

Participants will work with GRACE to develop program formats and production and will present a proposal based on their experience in a clinical trial program. Participants will be expected to attend (via ZOOM) regular monthly meetings through the program year to learn and to discuss their ideas. A minimum of three (3) media productions per participant will be expected by the end of the program.

Ideal Candidates

People who are navigating a cancer diagnosis, who are currently or have been involved in a clinical trial, and who have a passion for helping others and telling their story are ideal for this program.

Applicants should have a particular interest and passion for communications, sharing experiences, storytelling, and patient education. People looking for a way to give back to the cancer community, who exhibit strong written and oral communication skills coupled with a passion for sharing experiences in order to educate and advocate will thrive in this program. GRACE will guide them through boosting their voice to advocate for themselves and others in the cancer community.

2023 is our third year for this program, and we are excited to continue to generate a platform for patient advocacy and sharing patient education in the area of clinical trials.

All application forms must be submitted by July 1, 2023 for consideration. Applicants will be contacted by August 1, 2023 with information regarding acceptance and the next steps.

To apply online please click here OR download the above attached pdf form and email it to dbrock@cancerGRACE.org.

Any questions, please contact Denise Brock at dbrock@cancergrace.org or 888-501-1025 x2.

Video Language

Please feel free to offer comments and raise questions in our
discussion forums.

Online Community

Hello Natalieaster, Welcome to Grace. I hope your stay with us is short, but we are always here to answer, listen and share.

Since your doctor didn't seem too worried...

Foro en Español Sobre Terapias Dirigidas para el Cáncer de Pulmón

2025 HPV Advances Patient Education Program-Sponsored by Merck

August 9, 2025, Foro de Pacientes sobre Terapias Dirigidas en Cáncer de Pulmón 2025 (Webinar en Vivo)

2024-2025 PEA Program Videos-Thank You Exelixis and Janssen for Your Sponsorship

Recent Comments

JOIN THE CONVERSATION

another question about Tagrisso not working and alternatives

Hello Natalieaster, Welcome…

By JanineT GRACE … on Mon, 09/22/2025 - 14:30

The information you share is…

By LibbieRohan on Sun, 09/21/2025 - 20:55

Hi Mel, I'm sorry for the…

By JanineT GRACE … on Thu, 08/28/2025 - 11:26

Nutrition during cancer treatment

Hello.
I know this post is…

By mel on Wed, 08/27/2025 - 08:20

Information everyone should have :)

JanineT GRACE Community Outreach — Sun, 30 Apr 2023 18:01:23 +0000

Information everyone should have :) JanineT GRACE Community Outreach

Posts:710

GRACE Community Outreach Team

Sun, 04/30/2023 - 11:01

JanineT GRACE Community Outreach

Posts:710

GRACE Community Outreach Team

Below are patient advocate info links that you may have missed. They were recorded during our targeted therapies forum but these pieces are valuable to anyone.

Finding resources for patient and caregivers

Talking to loved ones about your diagnosis

Advice for newly diagnosed patients

Handling the stress of scans

An advocate's story: Finding your community Tons of good info from Terri Conneran from KRAS Kickers

Traveling for a clinical trial

We welcome discussion, questions and input on anyone of these subjects, here or a new thread.

Here's to today,

Janine

Forums

Whole Person Care

Reply # - September 8, 2023, 02:36 AM

Valuable share!

drpriyankachiripal

Posts: 2

I have been in the medical profession for more than 10 years and have extensive experience treating Breast Cancer. I am an oncoplastic breast surgeon with the Zydus Cancer Centre, in Ahmedabad, India, and I work closely with breast cancer patients. You may PM me.

Valuable share!

Cómo apoyar a tu pareja - Cuidando al cuidador - Parte 2

AlexandraGBeneke — Fri, 24 Mar 2023 18:44:58 +0000

Cómo apoyar a tu pareja - Cuidando al cuidador - Parte 2 AlexandraGBeneke Fri, 03/24/2023 - 11:44

Article and Video CATEGORIES

Cancer Journey

Cómo apoyar a tu pareja - Cuidando al cuidador - Parte 2

AlexandraGBeneke

Fri, 03/24/2023 - 11:44

El papel de la pareja y del cuidador cuando se le diagnostica un cáncer

Author

Sharika Amin, GRACE Guest Faculty

Formas de hacer frente a las consecuencias del cuidado de otras personas

En esta sección, analizamos posibles medidas que podemos tomar para apoyarnos en las luchas que supone ser cuidador.

Tomarse un descanso/ Encontrar el "tiempo para mí"

Cuidar de alguien parece una ocupación a tiempo completo, pero no tiene por qué serlo. Cuidar de uno mismo nos prepara para desempeñar mejor nuestro papel.

La mayoría de los cuidadores dudan a la hora de tomarse un descanso de sus responsabilidades, ya que se sienten culpables por alejarse, aunque sea temporalmente. Sin embargo, negar sus necesidades de salud física y mental durante un tiempo prolongado trastocará su identidad.

Intenta salir de casa y estar solo a diario, aunque sólo sea unos minutos. Puede ser algo tan sencillo como dar un paseo o comprar comida. Algunos cuidadores trabajan a tiempo completo mientras atienden a su ser querido. Aunque esto puede ser un descanso necesario, también puede añadir estrés a la situación. Cualquier actividad que te permita la independencia de ser tu mismo, por pequeña que sea, puede ayudarte a centrarte y evitar el agotamiento.

Conoce tus limitaciones: no puedes verter de una jarra vacía

Los cuidadores también son individuos que tienen sus propias necesidades, deseos y anhelos. También disponen de una cantidad determinada de recursos.

Actuamos como cuidadores de personas que suelen estar cerca de nosotros y, por tanto, nos sobrecargamos de responsabilidades. A veces nos sentimos culpables y tememos no estar dando lo mejor de nosotros mismos.

Una persona sólo puede dar hasta cierto punto. Después, necesita reponerse. Es importante recordar que la incapacidad de dar en un momento dado no se traduce en fracaso.

Poner límites es sano y pedir ayuda también lo es. Establecer límites realistas sobre lo que puedes hacer se convierte en algo esencial. Por ejemplo, si tienes una lesión de espalda y tu ser querido es demasiado grande para que lo levantes, puedes ayudarle a darse la vuelta en la cama, pero no intentes levantarlo tú solo ni cogerlo si se cae. Puedes acabar gravemente herido e incapacitado para ayudar a alguien. Aquí es donde se necesita la ayuda de expertos; las enfermeras de atención domiciliaria o los fisioterapeutas pueden enseñarte a trabajar con seguridad. También pueden ayudarte a conseguir equipos especiales si los necesitas. Tu propia salud y seguridad deben ser lo primero si quieres seguir ayudando a tu ser querido.

Cómo encontrar apoyo para ti mismo

Lo más sorprendente del apoyo es que te ayuda a "compartir". Compartir la carga, las responsabilidades, el trabajo. No promete quitártela, pero sin duda ayuda a aliviarla compartiéndola. Algunas posibilidades pueden ser:

1. Familia y parientes - Tradicionalmente, el apoyo se encuentra en la familia, los parientes y los amigos, que proporcionan un espacio seguro para sentir las diversas emociones que surgen en el viaje del tratamiento contra el cáncer.

2. Grupos de apoyo - Algunos de nosotros podemos encontrar más consuelo en compartir y buscar el apoyo de personas que se encuentran en una situación similar a la nuestra, lo que te hace sentir realmente comprendido. Hablar con otras personas que se encuentran en situaciones similares a la propia puede ayudar a aliviar la soledad. También se obtienen ideas útiles de los demás que pueden ser de ayuda. GRACE tiene un foro activo para aquellos que buscan apoyo, y se puede encontrar aquí.

3. Asesoramiento individual - Otra opción es hablar con un profesional capacitado para ayudar, apoyar y proporcionar atención en la situación para aumentar la auto-eficacia.

Prepárate para que algunas personas no te ayuden

Cuando alguien padece una enfermedad grave como el cáncer, los amigos y la familia suelen tender la mano para ayudar. A veces, personas a las que no conoces muy bien también quieren echarte una mano. Sin embargo, es importante darse cuenta de que hay otras personas que tal vez no puedan o no quieran ayudarte. Puede que te preguntes por qué alguien no se ofrecería a ayudarte a ti o a tu familia cuando estáis lidiando con tantas cosas.

Algunas razones comunes son:

Enfrentarse a sus propios problemas
Falta de tiempo
Miedo al cáncer o haber tenido ya una mala experiencia con el cáncer; no querer implicarse y volver a sentir el dolor.
Creer que es mejor mantener las distancias cuando la gente lo está pasando mal.
No darse cuenta de lo difíciles que son realmente las cosas para ti, o no entender que necesitas ayuda a menos que se la pidas directamente.
Sentirse incómodos porque no saben cómo demostrar que se preocupan por ti.
Diferencias culturales en cuanto a la conveniencia de ofrecer atención

Si alguien no te ofrece la ayuda que necesitas, puedes hablar con él sobre tus expectativas, sobre todo si la relación forma parte de tu vida. Es muy posible que estén abiertos a discutir el tema y te permitan ver su punto de vista. También puedes optar por aceptarlo. Sea cual sea tu elección, tratar el tema puede evitar que se acumulen el resentimiento y el estrés.

Auto-compasión

Los sentimientos no son inherentemente "buenos" o "malos"; simplemente existen y hay que entenderlos. El primer paso para comprender tus sentimientos es saber que son normales y, lo que es más importante, válidos.

Algunos sentimientos que pueden aparecer y desaparecer son:

Tristeza. Está bien sentirse triste. Sin embargo, si dura más de dos semanas y te impide hacer lo que necesitas, habla con tu médico.
Enojo. Puede estar enojado contigo mismo o con miembros de tu familia. Puedes estar enfadado con la persona a la que cuidas. Debes saber que la ira suele ser consecuencia del miedo, el pánico o el estrés. Intenta ver qué hay detrás de la ira.
Duelo. Puede que sientas la pérdida de lo que más valora. Puede tratarse de la salud de tu ser querido o de la pérdida de la vida cotidiana que tenías antes de que le detectaran el cáncer. Permítete llorar estas pérdidas.
Culpabilidad. Sentirte culpable también es habitual. Puedes pensar que no estás ayudando lo suficiente, o puedes sentirte culpable de estar sano.
Soledad. Puedes sentirte solo, incluso con mucha gente a tu alrededor. Puedes sentir que nadie entiende tus problemas. También es posible que pases menos tiempo con los demás.

Experimentar estos sentimientos sólo significa que eres humano y que necesitas la misma atención y los mismos cuidados que tú, como cuidador, extiendes a los demás a tu alrededor.

Cuidar tu cuerpo

Puede que te sientas demasiado ocupado o preocupado por tu ser querido como para pensar en tu propia salud. Sin embargo, es habitual que los cuidadores tengan problemas de sueño, dolores de cabeza y ansiedad, además de otros cambios físicos.

¿Tenías problemas de salud antes de convertirte en cuidador? Si es así, ahora es aún más importante cuidarte. Además, añadir factores estresantes a tu vida puede causarte nuevos problemas de salud. Asegúrate de informar a tu médico si notaa algún cambio nuevo en tu cuerpo. Manténte al día con tus propias necesidades de salud.

Intenta lo siguiente:

Acudir a todas tus revisiones
Tomar tus medicamentos
Comer saludablemente
Descansar lo suficiente
Hacer ejercicio
Dedícate tiempo a relajarte

Encontrar el sentido a todo durante el cáncer

El cáncer hace que muchos cuidadores vean la vida de nuevas maneras.

Piensan en el propósito de la vida y a menudo se centran en lo que más valoran. Es posible que tu y tu ser querido se pregunten por qué el cáncer ha llegado a sus vidas. Puede que anhelen que las cosas vuelvan a ser como antes de la enfermedad. También es posible que vean cosas buenas, como por ejemplo, que el cáncer les une más. Es normal ver la enfermedad tanto en positivo como en negativo.

Habla con tu pareja

Muchos de los miedos e inseguridades que surgen tras el diagnóstico

pueden estar centrados en los retos asociados a la toma de decisiones y el bienestar de nuestra pareja enferma de cáncer. A veces, mantener una conversación sincera y empática puede ayudar a apaciguar los temores.

Algunas sugerencias son:

Hablar de cómo se siente cada uno
Compartir cómo lo está afrontando cada uno
Analicen las cosas que les causan estrés a ambos
Hablen de las decisiones que pueden tomar juntos.
Intenten estar agradecidos el uno por el otro
Dediquen tiempo a otras cosas aparte del cáncer

El tratamiento y la recuperación del cáncer es un proceso que requiere apoyo, paciencia, atención y amabilidad, tanto para el paciente como para su cuidador. Sé amable contigo mismo como cuidador y nunca dudes en pedir ayuda, ya sea profesional o personal. No estás solo.

Sharika se licenció en Psicología Clínica en el Hospital Dr. Ram Manohar Lohia (PGIMER) y obtuvo un máster en Asesoramiento Clínico y Psicología Aplicada en la Universidad de Delhi. Agradecemos a Sharika su voluntariado y su ayuda a la comunidad GRACE.

Please feel free to offer comments and raise questions in our
discussion forums.

Online Community

Hello Natalieaster, Welcome to Grace. I hope your stay with us is short, but we are always here to answer, listen and share.

Since your doctor didn't seem too worried...

Foro en Español Sobre Terapias Dirigidas para el Cáncer de Pulmón

2025 HPV Advances Patient Education Program-Sponsored by Merck

August 9, 2025, Foro de Pacientes sobre Terapias Dirigidas en Cáncer de Pulmón 2025 (Webinar en Vivo)

2024-2025 PEA Program Videos-Thank You Exelixis and Janssen for Your Sponsorship

Recent Comments

JOIN THE CONVERSATION

another question about Tagrisso not working and alternatives

Hello Natalieaster, Welcome…

By JanineT GRACE … on Mon, 09/22/2025 - 14:30

The information you share is…

By LibbieRohan on Sun, 09/21/2025 - 20:55

Hi Mel, I'm sorry for the…

By JanineT GRACE … on Thu, 08/28/2025 - 11:26

Hello.
I know this post is…

By mel on Wed, 08/27/2025 - 08:20

Cómo apoyar a tu pareja - Cuidando al cuidador - Parte 1

AlexandraGBeneke — Wed, 22 Mar 2023 16:14:29 +0000

Cómo apoyar a tu pareja - Cuidando al cuidador - Parte 1 AlexandraGBeneke Wed, 03/22/2023 - 09:14

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Cancer Journey

Cómo apoyar a tu pareja - Cuidando al cuidador - Parte 1

AlexandraGBeneke

Wed, 03/22/2023 - 09:14

El papel de la pareja y del cuidador cuando se le diagnostica un cáncer

Author

Sharika Amin, GRACE Guest Faculty

El apoyo y el cuidador

Cuidando a un cuidador

Cuando llegan los informes de las pruebas y la creciente expectación confirma los peores temores con un diagnóstico de cáncer, sin duda a quien más afecta es al individuo. Sin embargo, sus ondas son de gran alcance; lo compartimos con nuestros padres, familiares, parejas, hijos o amigos, y casi cualquier persona en la que podamos confiar en busca de apoyo.

Estas personas se convierten en la columna vertebral de la lucha contra el cáncer, que puede ser un camino largo y aparentemente solitario. La presencia de un sistema de apoyo sólido puede hacer que resulte más fácil. En este viaje, los "cuidadores", nuestros seres queridos que nos apoyan, a menudo pasan desapercibidos en su lucha diaria para los médicos, los familiares e incluso para ellos mismos.

Para ayudar a combatir esa sensación de fatiga del cuidador, compartimos algunas estrategias útiles para apoyar a un ser querido y, de paso, comprender también el papel y los retos de un cuidador.

¿Quién es un cuidador?

Si estás ayudando a un ser querido durante el tratamiento del cáncer, tú eres es un cuidador.

Parece algo natural: cuidar de un ser querido. Sin embargo, "cuidar" adopta diferentes formas y versiones durante las distintas etapas del proceso.

Los cuidadores pueden ser familiares, amigos o cualquiera que cuide de una persona con una dolencia. Dado que cada situación es diferente, los cuidados también serán diferentes en cada caso, y no hay una única forma que funcione mejor. Por ejemplo, los cuidados pueden incluir:

- Ayudar con las necesidades personales y las tareas domésticas

- Gestionar las finanzas de la persona

- Organizar servicios externos

- Visitas periódicas

- Planificar las visitas al médico y garantizar el cumplimiento del tratamiento

- Gestionar el malestar emocional y psicológico escuchando, hablando y apoyando

- Ser la persona de contacto para mantener informados a los demás.

El impacto del diagnóstico: la perspectiva de la pareja

La idea del cáncer es aterradora, y en el tiempo posterior al diagnóstico de un ser querido, puedes experimentar una serie de sentimientos diferentes. Algunas reacciones comunes son:

- Sentirte ansioso y asustado, o quizás alterado o emocional

- Sentimientos de conmoción y entumecimiento

- Sentirte confuso, especialmente al intentar comprender información médica compleja

- Sentirte abrumado por la responsabilidad de ayudar en la toma de decisiones sobre tratamientos médicos

- Sentimientos de impotencia y frustración al ver que tu pareja se somete a muchas pruebas y procedimientos médicos

- Sentirte enfadado porque tu ser querido haya sido diagnosticado con cáncer, o desear que el cáncer se hubiera detectado antes.

Las reacciones anteriores son extremadamente normales y esperables al conocer un diagnóstico. Es importante validar nuestros propios sentimientos y abordarlos sin juzgarlos. Sin embargo, también es esencial tener en cuenta los posibles retos que pueden encontrar los cuidadores. Ser consciente de ello ayuda a prepararse mejor y, por tanto, a mitigar el estrés asociado.

Retos a los que se enfrentan los cuidadores

- Procesar emocionalmente el diagnóstico inicial o la recurrencia

- Gestionar los aspectos prácticos y emocionales del cuidado del paciente

- Afrontar un futuro incierto

- Enfrentarse al sufrimiento relacionado con los síntomas.

Consecuencias psicológicas de los cuidados

La experiencia de cuidar varía en función de cada cuidador, por lo que sus consecuencias también forman parte de un espectro. Algunos cuidadores informan de resultados positivos, mientras que otros informan de experiencias negativas, y algunos se encuentran en una combinación. No hay una forma única de experimentar este proceso.

Resultados positivos de la prestación de cuidados

Muchos cuidadores son capaces de encontrar el lado positivo en esta experiencia y se ha descubierto que los siguientes temas son los más comunes:

- Mayor aprecio de la vida

- Aclaración de las prioridades vitales

- Aumento de la fe

- Mayor empatía hacia los demás

- Mejores hábitos de salud

- Visión positiva de sí mismo

- Establecimiento de nuevas prioridades

- Mejora de la relación con el cuidador

- Aumento de la autoeficacia y sensación de recompensa

- Sensación de crecimiento personal y percepción de satisfacción personal

Consecuencias negativas del cuidado

En el otro extremo del espectro se encuentran las "consecuencias negativas". Es imprescindible entender que el término "negativo" no significa algo que no deba experimentarse o que deba ser motivo de vergüenza. Más bien, el cuidado crea exigencias que pueden superar los propios recursos y, en última instancia, causar consecuencias psicológicas negativas. El objetivo es tener una idea de los resultados negativos esperados para ayudar a encontrar la fuente de ayuda adecuada.

- Ansiedad

- Depresión

- TEPT

- Ansiedad por la salud

- Disminución de la calidad de vida del cuidador

El miedo, la desesperanza, la culpa, la confusión, la duda, la ira y la impotencia pueden pasar factura tanto a la persona con cáncer como al cuidador. Aunque la atención suele centrarse en el paciente, todo esto afectará también a la salud física y mental del cuidador.

Los cuidadores también pueden llegar a un punto en el que sientan que han fracasado de alguna manera, lo cual es un sentimiento natural y esperable. Sin embargo, este sentimiento agudo puede gestionarse en una fase temprana y mejorar la calidad de vida en general.

*Sharika Amin es psicóloga clínica licenciada y trabaja en Cachemira con Médicos Sin Fronteras.

Please feel free to offer comments and raise questions in our
discussion forums.

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How to Support a Partner - Caring for the Caregiver

dbrock — Fri, 06 Jan 2023 20:44:44 +0000

How to Support a Partner - Caring for the Caregiver dbrock Fri, 01/06/2023 - 12:44

Article and Video CATEGORIES

Cancer Journey

How to Support a Partner - Caring for the Caregiver

dbrock

Fri, 01/06/2023 - 12:44

The role of a partner and caregiver when diagnosed with cancer

Author

Sharika Amin, GRACE Guest Faculty

Download Article Here

Support and the Caregiver

Caring for a Caregiver

When test reports come in, and the building anticipation confirms the worst fears with a diagnosis of cancer, it certainly affects the individual the most. However, its ripples are far-reaching; we share it with our parents, family, partners, children or friends, and almost anyone that we can rely on for support.

These individuals become the backbone of one’s journey to fighting the battle with cancer, which can be a long and seemingly lonely road. The presence of a strong support system can make it feel easier. In this journey, the “caregivers”, our loved ones who are supporting us, often go unnoticed in their daily struggle by the doctors, relatives, and even themselves.

To help combat that sense of caregiver fatigue, we are sharing some useful strategies to support a loved one, and in the process, also understand the role and challenges of a caregiver.

Who is a Caregiver?

If you are assisting someone you love during cancer care, you are a caregiver.

It feels like something natural to do—taking care of someone you love. However, “taking care” comes in different forms and versions during different stages of the journey.

Caregivers can be family members, friends, or anyone who cares for a person with an ailment. Since every situation is different, caregiving will also look different for every case, and there isn’t one way that works best. For example, caregiving may include:

Helping with personal needs and household chores
Managing a person's finances
Arranging for outside services
Visiting regularly
Planning doctor’s visits and ensuring adherence to treatment
Managing emotional and psychological distress by listening, talking, and supporting
Being the contact person to keep others updated

The Impact of Diagnosis – A Partner’s Perspective

The thought of cancer is frightening, and in the time after diagnosis of a loved one, you may experience a range of different feelings. Some common reactions include:

Feeling anxious and scared, or perhaps upset or emotional
Feelings of shock and numbness
Feeling confused, especially when trying to understand complex medical information
Feeling overwhelmed with responsibilities about helping in the decision-making of medical treatments
Feelings of helplessness and frustration in response to seeing your partner undergo many medical tests and procedures
Feeling angry that their loved one got cancer, or wishing that the cancer had been found earlier

The above reactions are extremely normal and expected upon hearing a diagnosis. It becomes important to validate our own feelings and approach them without judgment. However, it is also essential to consider the possible challenges caregivers might encounter. Awareness about such challenges helps better prepare and hence mitigate the stress associated with it.

Challenges Faced by Caregivers

Emotionally processing the initial diagnosis or recurrence
Managing the practical and emotional aspects of patient care
Facing an uncertain future
Encountering symptom-related suffering

The Psychological Consequences of Caregiving

The experience of caregiving varies by each caregiver, hence its consequences also fall under a spectrum. Some caregivers report positive outcomes, while others report negative experiences, and some find themselves in a combination. There is no singular way to experience this process.

Positive Outcomes of Caregiving

Many caregivers are able to find the silver lining in this experience and the following themes have been found to be the most common:

Greater appreciation of life
Clarification of life priorities
Increased faith
Increased empathy for others
Better health habits
Positive self-view
Reprioritization
Enhanced relationship with the care-receiver
Increased self-efficacy and the feeling of being rewarded
A sense of personal growth and a perception of personal satisfaction

Negative Consequences of Caregiving

On the other end of the spectrum lie the “negative consequences”. It is imperative to understand that the term “negative” does not mean something that shouldn’t be experienced, or should be a cause of shame. Rather, caregiving creates demands that may exceed one’s resources and ultimately cause negative psychological consequences. The aim is to have insight into expected negative outcomes to assist in finding the right source of help.

Anxiety
Depression
PTSD
Health anxiety
A decline in caregiver quality of life

Fear, hopelessness, guilt, confusion, doubt, anger, and helplessness can take a toll on both the person with cancer and the caregiver. While the focus tends to be on the patient, all of this will affect the caregiver’s physical and mental health, too.

Caregivers can also come to a point where they feel that they’ve failed in some way, which is a natural and expected feeling. However, this acute feeling can be managed at an early stage and improve the overall quality of life.

Ways to Cope with Consequences of Caregiving

In this section, we discuss possible measures we can take to support ourselves with the struggles of being a caregiver.

Taking a Break/ Finding the “Me Time”

Caregiving feels like a full-time occupation, but it does not have to be. Caring for one’s self actually equips one to perform the role better.

Most caregivers might hesitate to take a break from their caregiving responsibilities, as they feel guilt for stepping away, even temporarily. However, denying your physical and mental health needs for an extended time will upend one’s identity.

Try to get out of the house and be on your own daily, even if just for a few minutes. This could be as simple as taking a short walk or shopping for food. Some caregivers also work full-time jobs while taking care of their loved one. While this can be a needed break, it can also add stress to the situation. Any activity that also allows you the independence to be just you, no matter how small, may help center yourself and prevent burnout.

Know Your Limitations- You Cannot Pour from an Empty Jug

Caregivers are also their own individuals who have their own set of needs, wants, and desires. They also have a set amount of resources.

We act as caregivers for people who are often close to us and hence overburden ourselves with responsibilities. Sometimes, we are riddled with guilt and fears that we are not doing our best.

A person can only give so much. After that, you need to replenish. It is important to remember that the inability to give at the moment does not translate to failure.

Drawing boundaries is healthy and asking for help is healthy too. Setting realistic limits on what you can do becomes essential. For instance, if you have a back injury, and your loved one is too big for you to lift, you may be able to help them roll over in bed, but don’t try to lift them alone or catch them if they fall. You may end up seriously injured and become unable to help anyone. This is where expert help is needed; home care nurses or physical therapists can show you how to work safely. They can also help you get special equipment if needed. Your own health and safety must come first if you want to keep helping your loved one.

Finding Support for Yourself

The most striking thing about support is that it helps you to “share”. Share the burden, the responsibilities, the toil. It does not promise to take it away but definitely helps unburden by sharing it. Some possibilities can be:

Family and Relatives - Traditionally support is found from family, relatives, and friends which provide a safe space to feel the various emotions that erupt from the journey of treatment for cancer.
Support Groups - Some of us might find more solace in sharing and seeking support from individuals who find themselves in a similar situation as ourselves, which makes you feel truly understood. Talking with others who are in situations similar to your own can help ease loneliness. One also gets useful ideas from others that might be helpful. GRACE has an active forum for those looking for support, and it can be found here.
One-on-One Counseling - Another option is speaking to a professional who is trained to assist, support, and provide care in the situation to increase self-efficacy.

Be Prepared for Some People Not to Help

When someone has a serious illness such as cancer, friends and family often reach out to help. Sometimes people you don't know very well also want to give you a hand. However, it's important to realize that there are others who may not be able or willing to help you. You may wonder why someone wouldn't offer to help you or your family when you're dealing with so much. Some common reasons are:

Coping with their own problems
Not having the time
Fear of cancer or having already had a bad experience with cancer; not wanting to get involved and feel pain all over again
Believing it's best to keep a distance when people are struggling
Not realizing how hard things really are for you, or not understanding that you need help unless you ask them for it directly
Feeling awkward because they don't know how to show they care
Cultural differences in appropriateness of offering care

If someone isn't giving you the help you need, you may want to talk to them about your expectations, particularly if the relationship is an integral part of your life. They may very well be open to discussing the issue and allow you to see their point of view. Or, you can choose to let it go. No matter your choice, dealing with the issue can prevent resentment and stress from building up.

Self-Compassion

Feelings are not inherently “good” or “bad”; they simply exist and need to be understood. The first step to understanding your feelings is to know that they’re normal, and, more importantly, valid.

Some feelings that may come and go are:

Sadness. It’s okay to feel sad. However, if it lasts for more than 2 weeks, and it keeps you from doing what you need to do, talk to your doctor.
Anger. You may be angry at yourself or family members. You may be angry at the person you’re caring for. Know that anger often comes from fear, panic, or stress. Try to look at what is beneath the anger.
Grief. You may be feeling a loss of what you value most. This may be your loved one’s health, or it may be the loss of the day-to-day life you had before the cancer was found. Let yourself grieve these losses.
Guilt. Feeling guilty is common, too. You may think you aren’t helping enough, or you may feel guilty that you are healthy.
Loneliness. You can feel lonely, even with lots of people around you. You may feel that no one understands your problems. You may also be spending less time with others.

Experiencing these feelings just means that you are human, and you need the same attention and care that you as a caregiver extend to others around you.

Caring for Your Body

You may feel too busy or worried about your loved one to think about your own health. Yet it’s common for caregivers to have sleep problems, headaches, and anxiety, along with other physical changes.

Did you have health problems before you became a caregiver? If so, now it’s even more important to take care of yourself. Also, adding extra stressors to your life can cause new health problems. Be sure to tell your doctor if you notice any new changes in your body. Keep up with your own health needs.

Try to:

Go to all your checkups
Take your medicines
Eat healthy meals
Get enough rest
Exercise
Make time to relax

Finding Meaning During Cancer

Cancer causes many caregivers to look at life in new ways.

They think about the purpose of life, and often focus on what they value most. You and your loved one may question why cancer has come into your lives. You may long for things to be like they were before the disease. You may also see good things that come out of it, such as it bringing you closer. It’s normal to see illness in both good and bad ways.

Talking With Your Partner

A lot of fears and insecurities that arise after the diagnosis may be centered around the challenges associated with decision-making and the well-being of our partner suffering from cancer. Sometimes having an honest and empathetic conversation can help appease fears. Some suggestions are:

Talk about how each of you are feeling
Share how you are each coping
Look at things that are causing you both stress
Talk about choices you can make together
Try to be grateful for each other
Make time to focus on things besides cancer

Treatment and recovery from cancer is a process that requires support, patience, care, and kindness, both to the patient and their caregiver. Be kind to yourself as a caregiver, and never hesitate to reach out for help, whether professional or personal. You are not alone.

*Sharika Amin is a licensed Clinical Psychologist working in Kashmir with Doctors Without Borders.

Sharika received her MPhil in Clinical Psychology at Dr. Ram Manohar Lohia Hospital (PGIMER) and Masters in Clinical Counseling and Applied Psychology at Delhi University. We thank Sharika for volunteering and helping the GRACE community!

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Please feel free to offer comments and raise questions in our
discussion forums.

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Hello Natalieaster, Welcome to Grace. I hope your stay with us is short, but we are always here to answer, listen and share.

Since your doctor didn't seem too worried...

Foro en Español Sobre Terapias Dirigidas para el Cáncer de Pulmón

2025 HPV Advances Patient Education Program-Sponsored by Merck

August 9, 2025, Foro de Pacientes sobre Terapias Dirigidas en Cáncer de Pulmón 2025 (Webinar en Vivo)

2024-2025 PEA Program Videos-Thank You Exelixis and Janssen for Your Sponsorship

Recent Comments

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another question about Tagrisso not working and alternatives

Hello Natalieaster, Welcome…

By JanineT GRACE … on Mon, 09/22/2025 - 14:30

The information you share is…

By LibbieRohan on Sun, 09/21/2025 - 20:55

Hi Mel, I'm sorry for the…

By JanineT GRACE … on Thu, 08/28/2025 - 11:26