Posts Tagged ‘Resources’

Resources for Women with Triple-Negative Breast Cancer from Living Beyond Breast Cancer  

Order Guide to Understanding Triple-Negative Breast Cancer, created by LBBC in partnership with the Triple Negative Breast Cancer Foundation (download brochure, order brochure).

“This publication offers helpful information, whether you have just been diagnosed or you are moving forward after treatment. Learn common terms your doctor may use and what might increase your risk for developing this type of breast cancer. Get the facts on treatments, and find out how to deal with myths about this diagnosis. If you have finished treatment, sort through post-treatment concerns, including follow-up testing and managing the fear of recurrence. Read the experiences of real women affected by triple-negative breast cancer and tips from healthcare professionals.”

“Read our publication on Triple-Negative Breast Cancer: Treatment Update and Tools for Healthy Living with Lyndsay N. Harris , MD, and Suzanne Dixon, MPH, MS, RD (transcript, audio recording). Hear the latest news on triple-negative breast cancer from medical and nutrition experts. Dr. Harris gives an overview of the biology of triple-negative breast cancer and explains how it differs from other types of breast cancer, who is at high risk and targeted treatments in the pipeline. Ms. Dixon explains how a low-fat diet and vitamin D may affect your risk of recurrence.”

“Listen to an audio recording on Triple-Negative Breast Cancer: Understanding Treatment Options and Post-Treatment Concerns (audio recording) with Ramona F. Swaby, MD. Learn which groups are affected more often by triple-negative breast cancer and why. Dr. Swaby discusses available treatment options including a review of the latest research in targeted and biological therapies, how to manage follow-up care and the importance of participating in clinical trials to further research development.”

Living Beyond Breast Cancer

Triple Negative Breast Cancer Foundation


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Twitter Yuma Survivors http://www.twitter.com/yumasurvivors

This is a group of patients, survivors, caretakers, agency representatives, health care workers, community volunteers, Relay for Life coordinators, hospice workers, medical care professionals, nonprofit organizations and American Cancer Society workers. We first met as a group in October 2008 to address access to information and resources, including LOCAL resources for cancer patients and survivors, and to collaborate with local fundraising efforts.

Not everyone is that excited about using twitter yet – especially really busy people. And some of the group are not online. But we are starting where we are and we are going to use this to keep in touch, share information and resources as we develop.  http://www.twitter.com/yumasurvivors.

We are attracting some attention from outside resources, and that’s GREAT!

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The group that got together in October to do community advocacy and resource directory for local cancer patients and survivors is waiting for the rest of us survivors to keep moving along.

We’re having an informal breakfast meeting next week at the local cafe on Main Street at 8 a.m. We’ll talk about the goals: create a directory of local resources and insert it into the state directory; recruit volunteers who will be trained by ACS to be in (the hospital/ clinic) (other place?) two or three mornings a week to answer questions and provide resource information and materials; recruit volunteers ACS will train for Reach for Recovery; help two local groups raising funds for research and treatment coordinate their efforts to continue $ for research AND keep some $ in the local community to help patients with the expense of accessing treatments and appointments out of town.  Some survivors also want to start a support group.

Since we are 2 – 2.5 hours from the front range where radiation treatment centers and other resources are located, we need to have some funds available to help folks get there, and improve the prognosis for people who otherwise might just skip treatment, or have a mastectomy instead of lumpectomy so they don’t have to have radiation, and to get to other facilities, when needed, in addition to the one the local hospital has contracted with. 

This community has raised enormous sums for Relay for Life, but none of that money stays in the community as dollars a local organization can distribute when needed to access tests, treatment and other appointments.

We have a LOT of enthusiasm in this new blended community group, so we need to keep focused and moving forward.  In the meantime, working on this has meant some of us survivors have talked to each other more often, which is functioning as the foundation for a support group, I think.

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I just read in the latest issue of AARP magazine about a new treatment advance called image-guided radiation therapy.  A doctor was quoted as saying, “I would guess almost everyone living in the U.S. is now within an hour of a center that has this.”   The system is supposed to give radiologists a more accurate picture of a tumor, which allows them to target it more accurately and reduces the number of treatments needed. 

Not only is our area not within an hour of a treatment center with image-guided radiation therapy, it is at least 2 hours to the nearest radiation treatment center of any kind.   I’m thinking there are lots of rural places that are not within one hour of treatment. 

The first radiation oncologist I saw said treatment was 5 days a week for 6 weeks, but it only took a few minutes, so I would have the rest of the day free.  Yes, I said, unless you counted the 5 hours it would take to drive there and back.

She said,

Oh, yes. There is that.

WWAMI Rural Health Research Center  has several access to care studies, including rural access to radiation oncology centers. 

This study will use cancer registry data from 10 U.S. states to examine which rural cancer patients are receiving recommended radiation therapy and what factors influence receipt of recommended treatment. Identifying gaps in radiation therapy will inform cancer centers, rural program planners, and policy makers in rural cancer service location and cancer support program development. This project is expected to be completed by August 2008.
I would like to hear comments from rural women cancer patients on how far it is to treatment and how you overcame the distance barrier.  Were there organizations that provided transportation or financial assistance with transportation costs? Did you have to stay out of town during treatment? Was there any help with those associated costs?

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