My Cancer Story -- Continues

My original diagnosis of ER/PR positive, Her2 Negative Stage2b - BRCA1+ with 5 positive nodes was in 2014. I had Chemotherapy, 4 AC and 4 Taxol, Bilateral Mastectomy, Oophorectomy, Hysterectomy, Expanders and full reconstruction - along with 35 radiation treatments. I was then declared "Cancer Free" in March 2015.

I was on Letrozole, daily, which I was told I would remain on it for 5 to 10 years.

However, on Groundhog Day 2017, I was re-diagnosed with Stage IV Triple Negative (TNBC) Metastatic Breast Cancer with a breast cancer tumor in my liver. As my first line of treatment, I joined a Clinical Trial - TOPACIO sponsored by Tesaro, which is a combined treatment of Immunotherapy and a Parp Inhibitor. The drugs are Niraparib (Parp) and Pemprolizumab (Immunotherapy). I have been on this trial since March 2017. ... Read More

Tuesday, November 6, 2018

Where is the OUTRAGE???

In 1995, if there was a terriorst attack in the United States, that slowly began to kill approximately 40,000 women annually and disabled approximately 150,000 women, who may die from this disability. AND this continued year after year for the next 23 years to today with no end in sight, no way to stop it. You can be sure everyone would be motivated to find a way to stop it immediately, before more women die and more are affected. Politians, celebrities, major corporations, Charities, and the public, would join together to find a way to stop it.  These are huge numbers of people per year and is unacceptable in the United States to not do everything to stop it. 

However, this scenario exists, with these exact tragic number of deaths annually (approximately 40,000) and another 150,000 living with Stage IV Metastatic Breast Cancer, dying for a cure in just the United States. The CDC has tracked and reported the cause of deaths since 1995 to date, and as you can see in the graph attached, these numbers have remained unchanged for breast cancer deaths for more than 2 decades.

Where is the outrage?  Where are the politicians, corporations, celebrities and just the citizens of the United States coming together to fund, research, and find a cure for those already effected and researching to create a vaccine to completely eradicate this horrible disease.

I have sat in meetings and telephone calls with various “activists” over the past few weeks and am so discouraged and disappointed but also MOTIVATED even more to be a part of the change.

I will be posting over the next few days, my thoughts on what needs to be done. I have struggled with  my platform for my personal advocacy and I think I have some more clairty now.

Know this, there are a lot of Breast cancer charities out there, many do great things for research and to help patients financially and emotionally while fighting this disease at all stages. However, the field is littered with charities all focused on the same features and getting on the “Breast Cancer Awareness” band wagon, accepting that what they are all doing today, as a group and individually, is making an impact. We have made huge strides in early detection but are leaving behind the Stage IV Metastatic women fighting, losing their lives and/or accepting a quality of life less than what they deserve. It seems to me that it has been decided that the numbers of people in this group of MBC, is not large enough to dedicate much more to. Only 5% of all the donations raised across all breast cancer charities are donated to Stage IV Metastatic research and a cure.

Change is needed- who will be the first National Breast Cancer charity to step out of the pack, and focus on finding a cure and saving women! And take their research to the next step, Find a CURE  AND develop a vaccine that can eradicate breast cancer, like we have done with other horrible diseases in the past.  A cure and finding a way to eradicate the disease do not have to be mutually exclusive, we can and should be focused on both!

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