[00:00:00] Adam Walker: In honor of national breast cancer awareness month. If you’d like to join the fight against breast cancer, please go to www.komen.org and donate today.
From Susan G Komen. This is real pink, a podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room. This week on the real paint podcast, we are having real conversations about metastatic breast cancer. We’ll be welcoming people living with metastatic breast cancer to share their stories, their experiences, and their words of encouragement.
Everyone can make a difference in the life of someone living with the disease by donating to breakthrough research. Thousands of families lives will be changed forever by an NBC diagnosis this year. Sadly, 44,000 lives are at risk this year. And the five-year relative survival rate for metastatic breast cancer is only 27%.
The Susan G Komen Metastatic Breast Cancer Collaborative Research Initiative is a first of its kind effort that is bringing together the best and brightest researchers at Duke Cancer Institute and UNC Lineberger Comprehensive Cancer Center to find breakthrough discoveries to end metastatic breast cancer.
Research will cure this disease. Until then, research will transform MBC from a terminal diagnosis to a chronic disease, giving patients and their families the priceless gift of time. Today’s guest, Pam Kohl is here to tell us more about the NBC Collaborative Research Initiative, as well as her own personal story of living with stage four metastatic breast cancer, Pam, welcome to the show!
[00:01:51] Pam Kohl: Great to be here. Thank
[00:01:52] Adam Walker: you. Well, this is important to talk about. And, and so, uh, but before we dive into the details, let’s start with your story. So I recall you were diagnosed with early stage breast cancer, and then years later had a recurrence and you’re now living with stage four metastatic breast cancer.
Just tell us all about that.
[00:02:10] Pam Kohl: Okay. Well, I was diagnosed with, as you say, early stage breast cancer. Less than a centimeter tumor, no lymph node involvement, estrogen positive, all the great things. If you have to have breast cancer, I would still all the right cards, uh, had lumpectomy, radiation and stayed on endocrine therapy for five years.
At the end of those that five years was, uh, told that I was cancer free and we had lots of celebration and very thrilled to know that I was cancer-free. And that, uh, the treatment that I had were three years later during October when I had my annual mammogram, because we all know October is breast cancer awareness month.
So that’s when I get my mammogram, there was something suspicious. I had to go through all of that. Well, let’s take another picture and another picture and another picture. And at that, after the third picture, that day I knew, I don’t know, this may not be good. So I was diagnosed with a recurrence of breast cancer in the same breast.
And because that breast had been radiated already, I needed. Have a mastectomy after the mastectomy, the pathologist, the pathology was a little funky and there was some things we didn’t quite know. And so I had, I, at that point I had, was working at Komen and I always say the good news is I work at Komen and I know a lot.
And the bad news is I work at Komen and I know a lot. So I asked for pet scans. Make a long story. Short, went through a lot to get that pet scan. Cause my doctors kept saying, I didn’t need a pet scan, et cetera, but I advocated for myself because I knew enough. And, uh, I had the pet scan and there were two suspicious areas that then required a biopsy.
And, um, that biopsy showed, uh, stage four metastatic breast cancer that was in January. Uh, this coming January, it’ll be five years. So I’m one of those 27%, um, that hopefully is gonna make it to, um, my five-year mark, which, you know, I have enormous gratitude for the incredible care that I’ve received here in research triangle park in North Carolina.
[00:04:35] Adam Walker: Hmm, that’s great. And so important, you know, that you advocated for yourself. I mean, we talked about that on this show over and over and over again that you know, your body, you know, you know, if you do the research, you know, the research and if you have that, a lot of times, if you have that, that sense, you’ve got to advocate for yourself.
So, so glad to hear you. And then we
[00:04:53] Pam Kohl: say all the time. Now those of us who, especially who are living with metastatic disease, you know, if you feel something, say something that if you’ve had breast cancer at any time in your life, you are at risk of becoming metastatic. Some of us are more at risk than others.
And it’s about, oh, I don’t know. I think there’s debate about the numbers that we think it’s around 30%. That’s going to end up with a recurrence of metastatic breast cancer. So as I said, some are at a lot more risk than others. So if you’ve had breast cancer and you feel something and you feel it for two weeks, say something and don’t allow yourself to be dismissed.
It’s critically, critically. That’s
[00:05:36] Adam Walker: right. Be, be that advocate for yourself. So. All right. Well, so, so let’s talk about treatments. What, what gives you hope you talked about, you know, you’re, you’re one of the five-year people. What gives you hope that there will be more treatments for people living with MBC and then eventually a cure?
[00:05:54] Pam Kohl: So, I mean, I think what gives me hope is what I’ve seen in my own personal experience. When I was first diagnosed with metastatic breast cancer. That day. I was told that my life expectancy expectancy was two and a half to three years at best. Um, and, but they said. Uh, the FDA has approved a new drug that we’re going to put you on that, you know, we hope will slow progression for maybe two years, maybe two and a half.
And I stayed on that drug for four and a half years with minimal progression. I had a little bit, you know, I’d get a new med or a new tumor, um, every now and then, and we would go in and treat that tumor. Up until really about three months ago, I have been pretty stable, but I’ve been getting pet scans and CT scans every three months.
And my last, um, scan, I had some new tumor, so, um, cha I had to change treatment. And so for me, what gives me hope is that these new drugs that are coming on the market all the time, whether you’re estrogen positive or her to pause. Are keeping us alive longer and the longer we can stay alive, the more hope that we have is that when the drug that we’re currently on fails, we’ll have another line of treatment and another line and another line.
So I’m just starting my second line now after five years, which is almost unheard of. Um, and you know, we’re hoping that this line will keep it stable for a year. And then we know there’s another line. Hopefully by the time that one fails, there’ll be something that will be approved. And you know, the fact that we can stay alive longer just enables our quality of life, as well as our hope that if we can’t find the cure right away, Trust me, my family.
We would be happy for this to be a chronic disease. So, um, we keep working on that and keep hoping to just have another line of treatment. It’s a hard thing. It’s a very random disease. It is. Metastatic breast cancer is smart and tenacious, and it does not like to give up it’ll switch types. And so you’re, we are always on the hunt for do I have new tumors?
And if I do, are they still estrogen positive? And if they’re not, then we definitely need to change treatments. And it’s so random, you know, somebody who is in the same circumstance as I was. Didn’t I, the drug that I was on didn’t work for them. It only lasted two years. We have no idea. Those are the kinds of things we need to understand.
Why did I, why did my drug work for me for five, almost five years and for another woman or man, it may only be one year. Those are one of the million things we need to find out. The fact that we do have these new drugs is enabling more and more research.
[00:09:06] Adam Walker: Yeah. Wow. That’s great. So now you do work with the Komen metastatic breast cancer collaborative research initiative.
How did this come about and what have you been working?
[00:09:16] Pam Kohl: Yeah, so this was pretty exciting. And another kind of amazing thing, you know, I’ve been at Komen 10 years and as the executive director of a common affiliate in, um, Raleigh Durham, chapel hill, I knew the common scholars at duke, and I knew the common scholars at UNC, and I knew the kinds of research, breast cancer research that was being done in both institutions.
And I was aware of the recent. That was similar. I knew there were researchers at both institutions working on a vaccine. I knew there researchers in both institutions that are working on immunotherapy, and I also knew of research that was being done at UNC and duke. That was very different and very unique.
And then their particular, what I called tunnels and all of it was very exciting, but. Also frustrating knowing that I knew both ends of this and saw amazing things and brilliant people working in their own silos. And so I kept thinking my goodness, if we could bring together the most brilliant minds from duke and UNC they’re eight miles apart.
If we could bring them together to focus on metastatic breast cancer, the only chance of breast cancer that kills. If we could bring these minds together, we would have impact. I had no doubt about that and I understand, uh, the rivalry on the basketball court I’m, uh, you know, true Carolina blue fan. My son’s first words were go heal.
Um, so I understand that and I’m treated at duke and I understand that as well, but I never had any doubt that regardless of that rivalry, if we came together, we would find treatments. And so, you know, the first thing I had to do was see whether duke and UNC would play in this arena, um, and whether they would even consider these are academic institutions that have all kinds of guidelines and rules and regs, when it comes to.
Research and they compete in research and they compete for dollars. And here I am trying to find a way to get them to work together. And, and I talked to, uh, actually Dr. Lisa Carey at UNC and said, am I completely crazy? Um, or could this actually happen? And what would it take? And she just looked me right in the eye and she said, Pam, it’s going to take money on the test.
And I went, okay, how much money would have to be on the table? And she said a minimum of a million dollars to get us both at the table to begin talking. And I said, well, that doesn’t scare me. Let’s see what we can do. And at that point I talked to national Komen about, could we free up my time so that I could focus on this.
And then I talked to the development people at duke and UNC and to the CEOs at Lineberger and duke cancer Institute. A lot of conversations about this. And we kicked off this initiative, um, on January 15, which was my birthday in, um, 29th, 20, 20, um, little did we know that we were going to kick that off in January and in March we were going to be facing.
The pandemic that, uh, we are still facing with our goal. When we kicked it off was to raise a million dollar milestone. Let’s raise that first million dollars, which we did independent. And, you know, there was just so much enthusiasm for the concept of putting a laser focus on metastatic breast cancer and putting money on the table to find the treatments and cures for metastatic disease.
And everybody loves the concept of bringing duke and UNC together to work together, to find those treatments and cures. So we raised the money. We, um, hosted the first metastatic breast cancer collaborative summit, where we invited researchers from duke and UNC to come together to begin the conversation we hoped we get 50 researchers to attend and we had over a hundred.
And we ended up having to do it virtually, but that was fine. And we presented a request for proposal, for people to think about what they might want to do together to find the cures. And we were hoping that at the end of the summit, that several folks from each institution would decide on having a first state to have a conversation.
And we were hoping that we would get maybe five. Team proposals and we’ve got 10 letters of intent. And nine full proposals. So we far exceeded our expectations.
[00:14:33] Adam Walker: Wow. That’s amazing. I mean, I love that you brought those two, two schools together. I also love that you mentioned the school that you root for and that kind of stuff.
So that’s a, I love, that’s just fantastic. And I love the work that you’re doing. It’s, it’s such a such important work. So speaking of that, today is a big announcement for the initiative. Do you want to tell our listeners what Komen will be?
[00:14:56] Pam Kohl: Right. So we got 10 proposals, collaborative research proposals from duke and UNC.
There are code, uh, PIs, et cetera. And Coleman’s very robust. Yeah. Uh, nationally regarded peer review process, reviewed each of the proposals and scored each proposal. And we are announcing today the recipients of two collaborative metastatic research projects. Um, that we’ll focus on, obviously finding the treatments and cures for metastatic disease.
These are two $500,000 grants. So each team will be awarded a $500,000 grant to focus on finding treatments and cures for metastatic disease.
[00:15:44] Adam Walker: Wow. That is fantastic. I love that. I can’t, I can’t wait to for the announcement. That’s going to be great. That’s gonna be great. Yeah, we
[00:15:51] Pam Kohl: are beyond excited. We believe with all of our hearts that these two, uh, research grants will be transformation.
One of the grants is funded by blue cross blue shield of North Carolina. And it is targeted specifically to address disparities. The fact that black women are 42% more likely to die from metastatic breast cancer is unacceptable. And one of these collaborative research projects is focusing specifically on disparities.
So we have no doubt that by working together. Um, these two institutions with Comans Machinal worldwide, worldwide understanding of what the most critical and urgent questions are that we must answer. If we’re going to find tweets and treatment and cures that the synergy between the three of us is going to have huge impact on the lives of people like.
[00:16:50] Adam Walker: There’s no doubt. There’s no doubt that it will. It’s going to have a massive, massive impact. And I still appreciate the work that you’re doing. So it’s obvious that you’re passionate about research. So how can our listeners support that? How can they support the work that Komen is doing with the NBC collaborative research?
[00:17:08] Pam Kohl: Well, we are very busy right now raising the second million. Uh, we had nine proposals and they were all good. And we know that if all it takes, we have fundable proposals from teams, from duke and UNC. All it takes is the money to fund them. So we are working hard every day, passionately, urgently, um, to raise the next million so that we can fund two more.
And of course you can go to Komen’s website and look for the MBC collaborative research initiative and you can go online and give a gift, or you can reach out to me. At P Kohl, K O H firstname.lastname@example.org. And I can tell you other ways that you can, um, give and make a pledge. We take pledges for two years or three years, et cetera.
[00:17:59] Adam Walker: Wow. That’s fantastic. Well, Pam, I admire and appreciate the work that you’re doing and just the Herculean effort to bring all that together is just so amazing. So inspiring. And thank you so much for joining us on the show.
[00:18:13] Pam Kohl: Thank you so much, and we’re delighted to be able to announce these exciting projects.
[00:18:19] Adam Walker: Thank you for joining us for this special episode of real paint focused on metastatic breast cancer. You can help the metastatic breast cancer community today by donating to breakthrough research by visiting komen.org forward slash MBC donate.
Thanks for listening to real pink, a weekly podcast by Susan G Komen for more episodes, visit real pink.com and.org for more on breast cancer. Visit komen.org. Make sure to check out at Susan G Komen on social media. I’m your host, Adam, you can find me on Twitter at agent Walker or on my blog. Adam J walker.com.