Stage IV Breast Cancer Resources for Spanish Speakers

 

The Metastatic Breast Cancer Network (MBCN) offers brochures in English and Spanish for people living with  Stage IV breast cancer. Special thanks to our friend Sandra Bishnoi and the Center for Language and Intercultural Communications and the students in SPAN322–Medical Professions, Rice University, Fall 2015, for preparing the Spanish versions.

You can download a copy of  Diagnostico: Cancer de mama metatasico .

….and here is the English version: Diagnosis: Metastatic Breast Cancer

MBCN also offers Conozca Los Datos as well as the English version: Get the Facts

 If you’d like hard copies of the above brochures, drop us a line.

Learn more about SHARE’s helpline, support groups and education programs for Latinas. 

You’ll find Komen en Espanol here. 

This handout offers an overview of MBC in Spanish..  And here are questions you can ask your doctor about MBC.

BreastCancer.org has articles and discussion forums for Spanish speakers.

 Here is a list of nationwide MBC  support groups–the majority of which are in English. But there are are some Spanish speaking Stage IV groups–here is a fairly new one:

CALIFORNIA: Mission Viejo
“Nuestro Camino Juntas”
3rd Tuesday of each month
11:30-1:00
Mission Women’s Wellness Center
26732 Crown Valley Parkway, Ste 171A
Mission Viejo, CA 92691
Contact: 949-481-4145 – Marilyn Viera, LCSW, Support Group Facilitator

Are there additional Stage IV materials/resources in Spanish we should know about? Let us know–we are happy to add them.

Clinical Trials: Special Stage IV Search Engine, a great book and more

See Metastatic Trial Search

 

Are you looking for a metastatic breast cancer clinical trial? A new search engine makes it easy to quickly identify trials appropriate to your situation. The Metastatic Trial Search , powered by BreastCancerTrials.org, also translates the trial descriptions into plain English.

Although I am not currently looking for a trial, I was curious to see what a search would yield. I filled out the required engine fields (only five). The results returned 180 possibilities. I quickly scanned through the listings–and I found a couple I will keep on my radar. Why not take a look? Just click here: Metastatic Trial Search

Another valuable resource is this book, Cancer Clinical Trials by Tomasz M. Beer, M.D.  and Larry W. Axmaker, Ed.D. I found this 160-page soft cover book at my local library. I was surprised, because I live in a small town and the selection of cancer books is limited. I also wondered if the authors would have enough material for a book-length manuscript. It turns out they did!

This is a great book–very easy to read and the reader can easily browse through the chapters to find the material of greatest interest to him or her. The book is divided  into four parts: Cancer and Cancer Treatment Basics, What Are Clinical Trials and How Are They Organized, Deciding Whether to Participate in a Clinical Trial, Medical Treatment of Cancer Now and in the Future.

Although I was familiar with some of the material, there was quite a lot I didn’t know. I knew some of the history behind the evolution of the clinical trial system, but I came away knowing a lot more. I also appreciated the chapter on drugs currently in testing. Categories of chemotherapy drugs include antimetabolites, alkylating agents, DNA cross-linking derivatives, antitumor antibiotics, miotic inhibitors. Hormonal agents are also covered: testosterone and estrogen lowering drugs, hormone blocking drugs and testosterone conversion/activation blockers. But wait, there’s more: small-molecule targeted drugs, monoclonal antibodies, immunotherapy, differentiation therapy and gene therapy. Obviously, not all of these drugs have application to metastatic breast cancer but I appreciated the clear explanation of what they are and how they work.

You can read an excerpt from “Cancer Clinical Trials: A Commonsense Guide to Experimental Cancer Therapies and Clinical Trials” here.

While you cannot know the results of a clinical trial that has not been completed, it’s important to thoroughly understand why the trial is being conducted (the hypothesis) and how it’s going to be conducted (the experiment). You’ll also want to know how the clinical trial might benefit you: what is the expected—or hoped for—result. We will help you learn to ask the right questions of the right people to get these answers more quickly.–Dr. Tom Beer and Larry W. Axmaker

 

Cancer Clinical Trials Cover Final

–-Katherine O’Brien, August 2016

Notes for Those Newly Diagnosed With Metastatic Breast Cancer

Learning you have metastatic breast cancer can unleash a tsunami of emotions. Fear, panic, anxiety and anger are just a smattering of common responses. How can you deal with these feelings?

 

 

 Living Beyond Breast Cancer (LBBC) and MBCN have worked together to produce a  Guide for the Newly Diagnosed. See http://www.lbbc.org/get-support/print/guides-to-understanding/metastatic-breast-cancer-series-guide-newly-diagnosed

 

Talk to your oncologist--he or she may prescribe Ativan or other anti anxiety medications. Many treatment centers also have counselors on staff who specialize in helping those dealing with a cancer diagnosis. Ask if your center has a support group for metastatic breast cancer patients. Your oncologist also may be able to connect you with someone dealing with a similar diagnosis. Oncologists–like all medical professionals–must respect privacy laws.

 

If your doctor can’t suggest a local contact, you can reach out to a peer matching program and/or metastatic breast cancer hotline.

 

Here are several to check out:
SHARE hotline and phone support groups: http://www.sharecancersupport.org/share-new/support/groups/#metastatic

Living Beyond Breast Cancer helpline and other resources: http://www.lbbc.org/node/1578

Young Survival Coalition SurvivorLink is here: https://www.youngsurvival.org/survivorlink

 

Support Connection provides emotional, social and educational support here: http://supportconnection.org/contact-us-for-support/

 

BreastCancer.org has excellent information as well as  a dedicated Stage IV discussion forum. Here you will find others with MBC  https://community.breastcancer.org/forum/8

 

BCMets was among the first online forums for people living  with metastatic breast cancer:https://www.bcmets.org

 

Inspire.com hosts an Advanced Breast Cancer board: https://www.inspire.com/groups/advanced-breast-cancer/

Most people are familiar with early-stage breast cancer. Just what is metastatic breast cancer? Here is a concise overview:

 http://www.uptodate.com/contents/treatment-of-metastatic-breast-cancer-beyond-the-basics

…and here: https://medium.com/@ihatebreastcanc/metastatic-breast-cancer-the-missing-manual-from-a-stage-iv-patient-f8420a5a817d#.spajn14ks

NCCN Guidelines for Stage IV breast cancer treatment can be found here: http://www.nccn.org/patients/guidelines/stage_iv_breast/files/assets/common/downloads/files/stage_IV_breast.pdf   ( This PDF was issued in 2014; several new drugs have come out in the interim.)

BreastCancer.org has a detailed guide on understanding your pathology report: http://www.breastcancer.org/Images/Pathology_Report_Bro_V14_FINAL_tcm8-333315.pdf

How do you find an oncologist? You can ask your primary care doctor for a referral. Also: consider working with an NCI designated cancer center. Here  is a list: http://www.cancer.gov/research/nci-role/cancer-centers/find

Receiving the NCI-designation places cancer centers among the top 4 percent of the approximately 1500 cancer centers in the United States. More here: https://en.wikipedia.org/wiki/NCI-designated_Cancer_Center

 

Finally, we urge both the newly diagnosed and “veteran” patients to watch

Dr. Don Dizon’s EXCELLENT presentation from MBCN’s 2013 national conference: https://www.youtube.com/watch?v=5RKCGEpk2po

Dr. Dizon’s PRO approach (Pragamatic, Realistic and Optimistic) resonates with patients. Hopefully after watching this video you will feel informed, uplifted and empowered!

RIP Holley Kitchen, the MBC Mom Who Reached Millions

We were so very sorry to learn Holley died today, January 12, 2016.  She was 43 years old.

“Our hearts are broken as we share the news that Holley peacefully passed away early this morning,” writes Holley Facebook page friend and administrator. “She was surrounded by love, as she has been in every moment of her life. . .Details regarding Holley’s services will be forthcoming. Please respect the privacy of those closest to Holley as they grieve and make all the necessary arrangements. Thank you for your unending support and love.”  ‪#‎Lifer‬

Anyone who wishes to support the Kitchen family financially, can find the links here. Our hearts go out to Holley’s family and friends. She was a true gem.

“I didn’t know my risk for reoccurrence or what metastatic disease even meant,” she told PEOPLE magazine about the impetus for her famous video. “I didn’t want someone feeling like I did upon reoccurrence,” she said. “You get a cancer diagnosis and then you get a re-diagnosis and it’s a punch in the gut.”

Millions of people around the world learned what metastatic breast cancer is thanks to Holley’s decision to share her story.

Thank you, Holley. May God bless and keep your family.

 

Here’s our original post about Holley’s video:

Holley Kitchen’s viral video tells her metastatic breast cancer story…and is educating millions of people around the world about Stage IV breast cancer. Since being posted on June 5, the video has gotten more than 10 million views and 400,000 shares. You can watch it on YouTube here.

Holley’s metastatic breast cancer video has been seen by millions.

Holley lives in Cedar Park, Texas. She told her story to KVUE’s Terri Gruca. “Holley was diagnosed with stage 3 breast cancer at age 39,” Gruca told viewers. “After a double mastectomy, chemo and radiation she thought she was cancer free. A year later she found out it had spread to her spine and bones.”

“I think it resonates with people because it’s honest,” Holley told the reporter. ” It’s what people don’t want to say and what people don’t want to hear,” she said.

We love Holley’s sense of humor and how she personalized her story. She’s also self-deprecating–she stresses that she’s not trying to make people feel bad–her mission is education. Like so many of us, Holley didn’t know what metastatic breast cancer was or how people got it until her own diagnosis.

Holley’s video shows what one person can do. Holley did a great job of educating herself about metastatic breast cancer. She is obviously very familiar with “The 13 Facts Everyone Should Know About Metastatic Breast Cancer.” Thank you,  Holley,  for the shout out to MBCN.org at the very end of the video!

We also love Holley’s term for someone living with metastatic breast cancer: #lifer. You can find Holley’s group” Facebook page here.

 

….and now BuzzFeed has picked up Holley’s story: http://www.buzzfeed.com/juliegerstein/this-womans-breast-cancer-journey-will-leave-you-speechless