Breast Cancer Network of WNY

Coleen, Stephanie & Metastatic Research

Coleen Jones died on September 18, 2013. She was one of over 40,000 women in the United States who died that year as a result of a breast cancer diagnosis. Coleen was a wonderful mother, grandmother, sister, daughter, friend, and my wife of 32 years.

Coleen was 53 when she died. Her initial breast cancer diagnosis came in 2007 and was treated with surgery, chemotherapy, and radiation. Seemingly cancer free after that grueling regimen of treatment, we lived normal lives for the next few years. Then on Labor Day, 2012, she told me that a recent scan she had done to check out her colon uncovered lesions on her liver and lungs. Those lesions were likely to be breast cancer cells that had spread. Metastasis is the actual medical word for it. She had metastatic breast cancer, stage 4, incurable, terminal.

Most people think that breast cancer causes death. The reality is that people don’t die of breast cancer while it is in their breast. They die when it spreads to other organs, most commonly the liver, lungs, brain, and bones. Significant strides have been made over the past several years in early screening and detection. When caught in its early stages, the five year survival rate is as high as 98%. Coleen was in that bracket. Unfortunately for us, she did not get very far past that. One of the breast cancer problems is that up to 30% of women thought to be cured of breast cancer will experience a recurrence of that disease. And most times, that recurrence will be discovered in other organs and will not be curable.

So the medical profession, knowing that there is no cure for metastatic breast cancer, tries their best to manage the disease. Different treatments are attempted and may work for a while. Then when tumor markers elevate or blood work looks unfavorable, they try something different. Doctors do what they can but they are limited because there is no answer. Nobody knows what causes those seemingly dormant breast cancer cells to take up residence in other organs. Nobody knows how to prevent that from happening. It’s probably just me thinking out loud, but doesn’t logic dictate that if breast cancer cells in the breast are not fatal, shouldn’t we be figuring out how to prevent them from traveling? If people die as a result of metastatic breast cancer, shouldn’t money and focus be pouring into learning why the metastasis part happens in the first place? Shouldn’t that be a research priority?

It is estimated that less than 5% (maybe even less) of money spent on breast cancer research is directed to metastatic disease. Emphasis on early detection and awareness are admirable but do nothing for the thousands of women living with advanced stage breast cancer. Or the thousands of women who will develop advanced stage disease. There needs to be a much better balance in allocation of research funds so that finally, someday, answers can be found that will prevent these deaths.

I’m not sure how much Coleen knew about all this but my guess is that she knew all about the disparity. The final few weeks of her life were very challenging for her. After refusing another round of fruitless chemotherapy suggested by her oncologist, we turned to Hospice for end of life care in our home. She eventually lost her voice which was a merciless blow to her. Always quick witted and never at a loss for words, her voice was reduced to a whisper. She could be heard but sometimes it was easier for her to write her thoughts so we had a pad and pen nearby for her. One day, I told her that when she was ready, I wanted to ask her about her wishes.

A few days later, Coleen handed me her pad. She had written, “no open bar at wake, too expensive.” So that was my cue that she was ready to talk about some of her arrangements. We discussed all the important matters and then she told me to ask people to donate to metastatic breast cancer research instead of sending flowers. She was adamant about the metastatic part. I remember her saying it had to be metastatic research. I asked her what organization did that and she said, “I don’t know, you have to find it.”

So that was my indoctrination into this whole metastatic breast cancer research issue. I did find an organization and it was not far away. I contacted The Breast Cancer Coalition of Rochester and was told of their metastatic fund and how they award annual grants to researchers engaged specifically in metastatic disease. I not only requested that people donate there in Coleen’s memory, but I used that as inspiration to create a similar fund for the Breast Cancer Network, which I now work for.

People donate to all kinds of organizations in the name of breast cancer. They purchase things because they are pink and the seller says the proceeds are going to breast cancer. When you and I make those donations and purchases, do we know how much, if any, of our contribution is ever going to see the lab of a researcher? And will that researcher be working on solving the mystery of metastatic disease or will he be working on another facet of early detection?

I was contacted earlier this year by Stephanie Pierleoni who told me that she and her friends were organizing a women’s fishing tournament called “Reelin For A Cure” and wished to donate the proceeds to metastatic breast cancer research. They selected our organization to make the donation to, knowing that we had such a fund. Stephanie recently attended one of our functions and presented a very generous check of $5000 in front of 50 or so of our members. I am so grateful that somehow, Stephanie and her friends found Breast Cancer Network and entrusted us with the proceeds of their hard work. Sometime next spring, their $5000 will become part of a $50,000 grant that will be awarded directly to a researcher in New York state working on metastatic disease. No fees will be deducted, no administrative costs subtracted and it will not be given to an institution to pay their bills with a portion trickling down to research. Every penny of Stephanie’s $5000 will end up in the hands of that researcher working on curing the disease that claims 40,000 people every year.

That’s what Stephanie and her friends wanted, what Coleen wanted, what I want, and what we all should want. Solving the mystery of metastatic breast cancer is like breaking a code. When donating in the name breast cancer, take care to know that your contribution will be used appropriately. Coleen died almost 4 years ago and her request for metastatic research donations has been answered by many, including Stephanie and her friends. It’s my job to get it answered by more.

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