DURHAM, N.C. (WTVD) -- Pam Kohl remembers being told of her stage four metastatic breast cancer diagnosis.
"(I) was told that I had maybe two to three years to live and celebrated in January seven years," said Kohl.
The disease, which has spread to her hips and rib area, and has caused two vertebrae fractures, is still a constant presence in her life.
"I'm in treatment, (and) will be in treatment forever," said Kohl.
However, Kohl's outlook has changed drastically.
"There's a lot of reasons to be optimistic even in the face of a terminal diagnosis," said Kohl.
"No longer are we talking about these brain and spine metastases as being essentially dire in nature. We're actually starting to talk about legitimate cure rates in patients that have developed late stage cancer like this," added Dr. Peter Fecci, who serves as Director of the Duke Brain and Spine Metastasis Center.
Fecci noted there are few centers specifically designated towards brain and spine metastasis.
"Incentives towards health care systems to build multidisciplinary care teams, which can be done financially and also towards multidisciplinary research, collaborative research, those types of foci would be really important. When you think about the research realm, there are not a lot of dollars necessarily allocated towards research on brain and spine metastases per se. The simple fact is that researchers do tend to go where the money becomes available, so having more money available means that more people will focus on those areas," said Fecci.
Kohl, who previously served as Executive Director of Susan G. Komen, North Carolina Triangle to the Coast Affiliate, discussed the importance of how doctors approach treatment.
"I just didn't realize the new drugs and certainly didn't understand what was happening in terms of personalized medicine. And that's a huge breakthrough for so many of us, especially with breast cancer," Kohl shared.
Despite these advancements, Fecci said public awareness remains limited.
"A lot of people give up and don't seek out the types of care that might actually be available, including here at Duke, but at a variety of other institutions that are also just starting to develop a focus on this disease stage. And so we've gone from a period of time where we used to not offer much and feel like there was not much to be done to now having a variety of options for care," said Fecci.
"Education around brain and spine, metastatic disease still represents a glaring disparity," said Congresswoman Valerie Foushee, who represents the state's Fourth District.
Monday, Rep. Foushee introduced a resolution to designate June as Brain and Spine Metastasis Awareness Month.
"I believe that the time is now that Congress needs to act to recommit to improving and advancing life-saving treatment," said Foushee.
According to NIH, more than 600,000 Americans are living with metastatic cancers, a figure that is set to approach 700,000 next year.
"This resolution will call on the Department of Health and Human Services to increase education and awareness about their treatment options, support resources for establishing support centers for brain and spine metastases, and provide resources to increase access to dedicated clinical trials, which we know is very important. In addition to that, invest in research specifically into the biology and the treatment of brain and spine metastasis," Foushee explained.
"There are a variety of chemotherapeutics now, especially I would say in breast cancer in particular, that increasingly have excellent access to the brain. The other thing that I think has really been a major advancement in the last decade or so, our types of radiotherapy, radiosurgery in particular, that are really, really effective at keeping metastatic disease at bay in the brain, and stereotactic radiosurgery, which is really a focused beam of radiation that targets only the area where the lesion is can be something like 85 to 90% effective at locally controlling that disease. That is the most important element of treatment for brain metastases. It is increasingly becoming an important component of spine metastatic disease as well," said Fecci, who added the advent of certain immunotherapies have also been an important tool.
Kohl is hopeful for both more advancements and more attention to this work, as she makes sure to enjoy every moment.
"We're going to in August (to see) Bruce Springsteen for the third time this tour. So we just move forward."
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