Us Breast Cancer Patient's Voices Will Be Heard Within Komen

Komen Scholars Dr. Neil Spector, Dr. Priscilla
Brastianos and Peggy Johnson

Being a guest at Komen's Blogger Summit 2014 in DC was a honor for me where I learned of much greater extent of the successes of Susan G. Komen's Mission in the past 30+ years and moving forward with their new CEO and President, Dr. Judith Salerno.  The one thing I kept hearing over and over during Komen's discussions is "IMPACT", a strong word that shows that we all have the same passion and dedication, to end breast cancer forever. Komen is the largest research funding outside of government.  I learned that Komen has a process of reviewing and approving grants and funds only the best possible researches in breast cancer with $800 million invested thus far in research since 1982. I also learned that Komen's research is  presently focusing in on Inflammatory Breast Cancer and Metastatic Breast Cancer and also, it is the voice of the patients that will be heard within Komen. After experiencing this inspiring "behind the scenes" of Komen's Mission, it reaffirms my trust in Komen with their commitment to us breast cancer survivors and Nancy Brinker's continued fulfillment of her promise that she made to her dying sister, Susan, to do everything in her power to end breast cancer.

Nancy's Promise...

Community Outreach...

Lifesaving Breast Cancer Research...

Shift in Research Focus...

Advocacy and Global Programs...

National Cancer Survivors Day 2014

Celebrating "Life and Hope" on National Cancer Survivors Day 2014 with the ladies of the Victory Center.  Fun beautiful picnic day at Wildwood Park hanging out with my pink sisters as we ate and played a game of balloon toss. I stood proud as a survivor amongst other survivors of various different kinds of cancers and different milestones in years.

My Pink Sisters: Karen, Melissa J.,  Lori, Beth,
Jyll, Joyce, Melissa P. and Diane

Melissa and Jyll

Ugh! I dropped and broke the water balloon!

TNBC Metastatic Disease... New Hope for Breast Cancer Patients

Thank you Brenda Rehnke Beguin for sharing your amazing story of strength, determination and hope with us all. You are a walking testament that you can live with TNBC metastatic disease, thank you! Lots of love and hugs
New hope for breast cancer patients (Click link)

2014 Peace Love and a Cure Anthem Video

My friend and TNBC Survivor Roxanne Martinez was honored with the 2014 Courage Award, Please watch her amazing story of hope  ...and at 3:47, you'll see a photo of Roxanne and me in the video, "Sisterhood"

Congratulations Roxanne Martinez on receiving this year's Peace, Love and a Cure 2014 Courage Award. You give so much of yourself and encouragement to us TNBC sisters. Thank you for being our voice of TNBC and inspiring us to grasp on to hope, it's within our reach. xoxo

Roxanne Martinez's acceptance speech

Vote for Lori Flowers of Triple Step Towards the Cure for $10,000 Lady GODIVA Grant

“You have to bloom where you are planted.” This was my sister’s mantra, even after her diagnosis with triple negative breast cancer (TNBC), a disease many people have never heard of. Co-founding Triple Step Toward the Cure was my way of ‘blooming’ after losing her by raising awareness of TNBC and actively supporting those diagnosed. Treatment options are still limited and many women we work with are struggling just to make ends meet. We have a ways to go. However, I believe the steps we are taking add to collective efforts being made to better treat and ultimately end this disease." ~ Lori Flowers

Vote now through May 16, 2014:
http://ladygodivaprogram.com/finalists/entry/8668

Susan G. Komen Global Race DC May 10, 2014

Meeting Nancy Brinker, Founder of Susan G. Komen and her son Eric Brinker

Susan G. Komen Blogger Summit DC 2014

I'm very honored to be apart of this great event learning the direction of Komen's mission moving forward to a world without breast cancer. I was among 8 other bloggers who were selected to be a part of Komen's Blogger Summit in Washington DC on May 9th, 2014.  I've met speakers of the Mission team where science researchers and a patient advocate explained the process of reviewing Komen grants to ensure that only the best research is funded.  I was impressed in how the Komen Mission Team is committed to helping women in our communities and supporting outreach programs to encourage and empower women to be aware of their own bodies at an earlier age.  Komen's main focus continues to be in research to find a cure to end breast cancer forever.

Komen Blogger Summit's Agenda

Tumour Cell Genome Studies Give Rise to Individualized Therapy

" ...have documented 80 different types of an aggressive form of breast
cancer, called triple negative, defined by the absence of three hormone
receptors. Triple negative breast cancers represent about 16 per cent of breast cancers and, until the BC Cancer Agency’s work, had been treated as a single disease, often with little success. “The great advance of genomics is that we can now see how different they all are,” said Marra. Marra and Aparicio also found that cells within a single breast cancer tumour may contain different mutations, thus creating a mosaic of cells all evolving independently that each respond to treatment differently. That means drugs that kill cells with a specific mutation could easily leave other cancer cells unscathed to start new tumours. Cancer treatments would have to be targeted to the genome of all the cancer cells in a tumour to be effective, he said."

Click link to read full story:
Tumour cell genome studies give rise to individualized therapy

TNBCDay 2014 with Dr. Mohamed at UTMC

What started as an email I sent to my oncologist seeking their input of what more can we do to raise awareness of Triple Negative Breast Cancer for TNBC Awareness Day... 
Dr. Mohamed and the University of Toledo Medical Center (UTMC) put together a very well-organized and educational program with several speakers sharing information on various survivorship topics. I was excited when my Oncology Nurse had asked me to be one of the speakers and talk about moving pass breast cancer and being a voice for TNBC. I had a few of my TNBC sisters present from our support group which was very nice. Thank you Dr. Mohamed, Jan Tipton and all of the UTMC speakers in making this conference a success in bringing awareness to our local community.

My Story...
My name is Melissa and I am a 4 year Triple Negative Breast Cancer Survivor. In 2009, I found my lump by chance when I felt something under my breast. My mammogram did NOT detect my 2cm tumor because of having dense breast tissues. It was thought to be just a cyst, but I insisted on a needle biopsy right then and there. Then I received the dreaded call from my doctor. I'm 41 and I have breast cancer.  I learned that I had a rare and aggressive form of cancer that doesn't respond to hormone therapy, Triple Negative Breast Cancer. 
I spoke of early detection and the importance of self-breast exams and that TNBC tumors are not always detected on mammogram.  I spoke of TNBC is striking young women as early as age 24 that I personally know of. 

Moving forward after cancer... 
Nearing the end of my treatments I felt lost, life after cancer treatments was a lot harder than when I was going through it. People seem to think that when you're done with treatments and is cancer free that it's done and over, put it behind you, things can go back to normal... Only if it was that easy. I've struggled some... the life I once had, there's no going back to...

The Victory Center...
I turned to a local cancer wellness center for support, trying to figure out my new "normal" and live again.  I immediately got involved in their Breast Cancer Support Group where I was surrounded by people who didn't mind talking about cancer, sharing stories and who "get it."  The support group has helped me rejuvenate my self-image and ease the transition that I've been going through.

People I've met along the way...
I have met several other TNBC Survivors through an online support group and bonded with several of the women. I have met up with TNBC Sisters at different conferences, support groups and have traveled from as far as Maryland, Kentucky, North Carolina and California to meet up with my TNBC ladies.

My Blog...
I have created a blog, "Triple Negative Breast Cancer, I Won't Back Down!" documenting my journey to keep my family and friends informed of my prognosis. Journalizing was therapeutical for me as a way of expressing my feelings on the journey I'm on. My blogs expresses how I moved forward with postings and photos of breast cancer events that I participated in, meeting other breast cancer survivors and living life again. After treatments were over, I wanted to turn my blog into a more of an informational and inspirational site for TNBC awareness; posting latest research articles, inspiring stories and memorials on my TNBC pink sisters.  With my blog site, I have reached out to people all over the world reaching many countries in every continent with over 133,000 views to my site. My hope is that my site will help others to have hope, give them the strength to fight and to provide resources to get them the information they need to know about this TNBC subtype.

Our Sisterhood... 
We are an unique Sisterhood that are bonded by our uncommon disease.
I keep fighting for those that are still fighting, those that are too weak to fight and those that can no longer fight. I stand next to each and everyone of you sisters and fight, my fight is not over till all of my sisters are safe. Never lose sight of hope.  Have hope for a targeted therapy, and hope for more tomorrows. 

Quote from TNBC sister who passed at the age of 35:

"Our support group, we are never just one alone... The fears, the tears, the stress, the anxiety, the worry, and the pain are shared among all of us women in our group."

Dr. Mohamed

Melissa showing where she found her lump

YES!

Pink Sisters, Jyll and I LIVING LIFE!

My pink ladies Jyll, Melissa, Rita and Diane

Lego Kid's Fest 2014, Novi Michigan

Thinking of my TNBC sisters while I'm at play...

Remembering Triple Negative Breast Cancer Sister, Kady Haynes Cosio

Kady

Loss of another lady in our support group to TNBC. Kady Haynes Cosio, Age 30, departed on April 22, 2014 after fighting breast cancer for 2 years. Kady was originally diagnosed January 2012 with Triple Negative Invasive Mammary Carcinoma, (TN IMC) Stage 2b. One year later, January 2013, Kady had a (TN IMC) local recurrence and metastasis to liver that was estrogen positive. I barely crossed paths with Kady for we were both at the same C4YW 2014 Conference in Orlando in February. I remember seeing her dancing at the survivor party not knowing she was the Kady that I knew from our online group. So disheartening to hear of another young woman passing from this disease... our targeted therapy and/or cure just has not come quick enough for too many ladies that I have met through our online TNBC groups. We need to continue to fight for these ladies and hope for more tomorrows that are still battling. Rest peacefully Kady.

There is Life After Breast Cancer...

Melissa Paskvan on bottom pic

Survivors Rock!

Thanks so much for coming to THERE IS LIFE AFTER BREAST CANCER's booth at the YSC 2014 Conference in Orlando. It was fun meeting each and every one of you! 

We have uploaded the amazing and spectacular bubblegum ribbon photos to our  FACEBOOK page  Be sure to like us, then tag yourself and your friends. 

We look forward to connecting with all you warriors again!

XOXO, 

Hayley Townley & Margerie Manning

There Is Life After Breast Cancer 

An Empowering Site for Breast Cancer Survivors and Their Loved Ones. 

https://www.thereislifeafterbreastcancer.com

Triple Negative Breast Cancer, a Medical Update 2014

Rita Nanda, M.D.
Assistant Professor of Medicine
Co-Director, Breast Medical Oncology Program
University of Chicago Medicine 

April 17, 2014 

http://www.lbbc.org/Event-Archive/2014-04-17-TNBC-Medical-Update (Click link to download Podcast and Powerpoint)