Most people diagnosed with breast cancer will never have a breast cancer recurrence – the return of breast cancer. However, everyone who has had breast cancer is at risk of recurrence. If you are diagnosed with a recurrence, it’s not your fault. You did nothing to cause the recurrence. And, sometimes, when breast cancer recurs, it has spread to other parts of the body. It’s time we talked about breast cancer that hides in the shadows – metastatic breast cancer. Metastatic Breast Cancer is the last stage of breast cancer, when it has spread to other parts of the body.
A North Carolina native, Ms. Kohl has over 40 years of experience working in government and non-profit management. She currently serves as Executive Director of the Susan G. Komen, North Carolina Triangle to the Coast Affiliate which serves 29 counties in NC. In that role, Pam has been a passionate spokesperson and advocate for equitable breast cancer support services in Eastern NC and the vital need for breast cancer research. She has helped raise millions of dollars in support of those efforts.
Pam was diagnosed with Stage 1 ER+ breast cancer in 2009. She had a lumpectomy, radiation and stayed on her endocrine therapy for 5 years. She had no family history and the Oncotype tumor analysis showed a very low risk for recurrence. In 2014 she was declared cancer free. However, in October 2016, she was diagnosed with breast cancer again and on January 31st she was diagnosed with State IV metastatic breast cancer. She is currently on an oral chemo drug and endocrine therapy and has bone scans and PET/CT scans every 12 weeks. Pam lives everyday knowing that it is breast cancer research that is prolonging her life and hopes that it will find the cures that will save her life.
Pam was born and raised in Greensboro NC, graduated from Guilford College where she received the 2017 Guilford College Alumni Excellence Award. She is also a recipient of the Order of the Long Leaf Pine, which is presented to individuals who have a proven record of extraordinary service to the state of North Carolina. In May 2019, she was awarded the Coastal Federal Credit Union’s Power of Sharing Lifetime Achievement award for her many years of passionate work and leadership in the non-profit sector.
Pam lives in Raleigh with her husband Tom Gongaware and she has two Children Max 28 and Sofie 26.
Adam: [00:00] Most people diagnosed with breast cancer will never have a breast cancer recurrence, which is the return of breast cancer. However, everyone who has had breast cancer is at risk of occurrence. If you are diagnosed with a recurrence, it’s not your fault. You did nothing to cause the recurrence and sometimes when breast cancer returns, it has spread to other parts of the body. It’s time we talked about breast cancer that hides in the shadows, metastatic breast cancer.
[00:26] Metastatic breast cancer is the last stage of breast cancer when it has spread to other parts of the body. Joining us today to discuss metastatic breast cancer and her own personal journey is Pam Kohl. Pam, welcome to the show.
Pam: [00:39] Morning. How are you?
Adam: [00:40] I’m fantastic. How are you doing?
Pam: [00:43] I’m doing fine, thank you.
Adam: [00:44] Well, I’m really looking forward to talking with you and to just start that off to get to know you a little better. Can you just share a little bit of your story with us?
Pam: [00:51] Sure, so in 2009 I was diagnosed with stage one breast cancer in a mammogram in October. What is a woman supposed to do in October, breast cancer awareness month?
Adam: [01:05] That’s right, that’s right. Yeah.
Pam: [01:06] No family history and no reason to believe that I had breast cancer and I had my annual mammogram and my breast cancer was found then. I had stage one. I had estrogen positive as the surgeon said it’s the best card to have if you get dealt with breast cancer because there are so many options for treatment. The estrogen-positive has more treatments available than any of the others. It was less than a centimeter and I had a lumpectomy and radiation and in the biopsy and all of the analysis, it was no lymph node involvement and it was quote, “Oncotype,” which they study the tumor to see what the potential risk for recurrence was. My number was a six, which is extremely low so stage one less than a centimeter, no lymph node involvement, ER-positive. I was the poster child for early detection. I should have my lumpectomy, my radiation and five years of endocrine therapy and I should be cured.
[02:17] And so I did all that and I did my five years of endocrine therapy, which if you’re estrogen-positive is very important to do. Although now based on funding, Komen funded research and other funding, we now know that for many women, staying on the endocrine therapy is going to be important for ten years, not just five years. The end of five years I went to my oncologist and they said, “Yay, you’re cured and you can go off your endocrine therapy.”
[02:50] I knew a little bit and so I said I’ve been hearing rumors that maybe I should stay on ten years and at that point, the studies had not been published and, “No, with an Oncotype of six, blah, blah, blah, you’re good to go. You’re cured,” and lots of women hear that at the end of their treatment and the end of their endocrine therapy. And we go and we celebrate, but we never fully feel comfortable.
Adam: [03:16] Yeah, right.
Pam: [03:16] And in 2016 in October I went and got my annual mammogram again and there was something suspicious and they said, “We’re going to send you back.. come back,” and once you’ve had breast cancer and you’re at the mammogram center and they keep calling you back for a second picture and a third picture and a fourth picture, your heart starts to pound.
Adam: [03:44] Yeah, right, right.
Pam: [03:44] So then they said, “Well, we’re going to do an ultrasound right now,” which was also kind of a scary thing and then they did the ultrasound and they still felt like it was probably scar tissue. It was in the same breast and they decided they needed to go ahead and do a biopsy, which they scheduled and they still felt like even during the biopsy, they kept saying, “We don’t think this is anything.” But the biopsy came back with a recurrence of breast cancer and it was estrogen positive in the same breast almost in the exact same location.
Adam: [04:22] Wow.
Pam: [04:22] So, yeah, very scary and disappointing so because that breast had already been radiated, it was not really a candidate for another lumpectomy because with a lumpectomy you need to do radiation, so we opted for a mastectomy. Did the mastectomy with full expectation that the tissue would be sent again to be Oncotyped to make certain that it was quote “Just a recurrence.” And it took a long time because it was Christmas, anyway, for some reason the tissue, well I now know why the tissue- it wasn’t one solid tumor it was a lot of little tumors and it could not get Oncotyped. So we really didn’t know for sure that it was a recurrence.
[05:14] My oncologist at that point suggested that I go back on endocrine therapy starting the next day. Far as he was concerned it was just a recurrence. I work at Komen and so the good news is I know a lot and the bad news is I know a lot.
Adam: [05:33] I know a lot, yeah that’s right. Yeah.
Pam: [05:35] Just wasn’t quite sitting with me that we were going to go on this treatment on a best guess that this was just a recurrence, and I kept asking for a PET scan and they kept saying, you don’t need a PET scan because it’s just a recurrence and I kept advocating and at one point the radiation oncologist said, “I don’t think we need to do radiation, but I’m not sure so I want to take your case to the tumor board at the hospital.” And at that point, I said, “If we’re going to the tumor board, then I need a PET scan.”
Adam: [06:12] Yeah, yeah, of course.
Pam: [06:13] And then she tried to talk me out of it. I kept saying, “Look, I don’t think there’s anything wrong, but I want a baseline if I’m back here in five years.” So she fought for me to get it covered. Had the PET scan, had two suspicious areas in lymph nodes near my lung. I tell the story that I had the biopsy in the afternoon I was in the hospital and my husband and I were waiting in the outpatient recovery. It’s 6:30 at night and I see my oncologist walking in one door and my radiation oncologist walking in the other door and I looked at my husband and said, “This is not going to be a good meeting.”
Adam: [06:53] No.
Pam: [06:53] Diagnosed with stage four metastatic breast cancer.
Adam: [06:57] Hmm, wow, that’s tough.
Pam: [06:58] Yeah, that was twenty-eight months ago.
Adam: [07:01] Wow.
Pam: [07:03] So yay, not the expectation that they gave me when they explained the prognosis and what stage four metastatic breast cancer typically means.
Adam: [07:15] Yeah and give me that overview, let’s define metastatic breast cancer if you would for those listeners that may not be familiar.
Pam: [07:22] So metastatic breast cancer is when your breast cancer spreads to other parts of your body, not in the breast quadrant where you had the initial diagnosis. So that means your liver, your kidney, your bones, your lungs or your brain and let me also just explain that breast cancer is not one thing. Breast cancer is a variety of cancers so you can be estrogen positive, you can be estrogen positive, HER2-positive, you can be triple-negative. These are all things we’ve learned in the last ten years through important funded research, so now every woman gets treated based on her typical type of breast cancer. So when you get a stage four diagnosis depending on the type of your cancer is where your metastases is likely to be.
[08:15] With estrogen-positive it does not typically go to the brain. It would typically go to lymph nodes or your bone or other areas. Other breast cancers typically would go to the brain, etcetera. Right now there’s no cure for stage four. There are more drugs available now than there were three years ago, five years ago and if you’re estrogen-positive again, there are more drugs available to you. What I was told when I was diagnosed is that the average survival is two to three years and they put me on a brand new drug and the goal when you’re metastatic is to stay on your first line of treatments as long as you can. Then you will fail on that drug and then you need your next drug or your next treatment and your next treatment and for those of us living with stage four, it’s all about hoping to stay ahead of the curve so that when we get to that last line that there’s another one there for us.
Adam: [09:23] Yeah and I know with recurrence of breast cancer sometimes there aren’t really very noticeable symptoms. Are there signs and symptoms that are common to look for metastatic breast cancer?
Pam: [09:37] So for metastatic breast cancer there are some, but I had no signs or symptoms and many women that I know didn’t have symptoms but many did, so what I would say to any woman who has ever had breast cancer, if you feel something, say something.
Adam: [09:58] Yeah, that’s right.
Pam: [09:59] Be your own best advocate and don’t allow your symptom to be dismissed. So any kind of bone pain, any kind of nausea that’s chronic and what we say is if you feel something that you haven’t felt before that lasts two weeks, call your doctor.
Adam: [10:17] Yeah, yeah, that’s right.
Pam: [10:19] Because I’ve heard so many stories of women who complained about pain in their femur or shortness of breath and it gets dismissed and dismissed and then they have a broken thigh because of the cancer in the bone. I was adamant about wanting that PET scan and that PET scan found my metastatic disease with only two what we called Mets and I only had two, and the research is not out there to prove that if you catch metastatic breast cancer early, it’s going to make a big difference, but …
Adam: [10:58] But it can’t hurt, right?
Pam: [11:01] Got to be better to be diagnosed with two Mets than twenty-five.
Adam: [11:04] Yeah, right it can’t hurt for sure, yeah.
Pam: [11:07] Anything that feels unusual don’t think that you’re a hypochondriac. Don’t think that you’re being dramatic, advocate for those additional tests. It’s really, really important.
Adam: [11:18] And I love what you said and it’s so simple and it’s so clear. If you feel something, say something. If something feels off for a period of time that is unusual, It’s time to go and talk to your doctor, right?
Pam: [11:33] Absolutely. I know it’s hard because the thing is we so want to be dismissed. So I mean when I had some pain in my back wasn’t related to cancer at that time, and when the doctor said, “Oh, that’s not your cancer.” Well, he hadn’t even done an exam.
Adam: [11:53] Well, and you make a good point where you’ve got to be careful that you don’t accept the answer just because it’s the answer that you want if your body is saying something else, and so you’ve got to be able to weigh that out within yourself to really be your own advocate, to push for the treatment and the care that you need.
Pam: [12:14] The other thing is for those of us who are diagnosed early-stage, pay attention not only to your body but pay attention. You still have to be vigilant, get mammograms. You still have to go read the research because when I finished my therapy the standard of care was five years when I finished my endocrine therapy. The care now for many, many women is ten years. Every single woman who has had breast cancer is at risk of recurrence and is at risk for metastatic breast cancer. Some of us have more risk, some of us have less risk, but we now know that every single woman who has had breast cancer is at risk at some time in her life. Whether it’s seven years out like me or ten years out or fifteen years out and you must be vigilant. Pay attention to the research. Stay on those websites that you were so active on when you were first diagnosed because you need to understand what’s going on and the amazing research in what we’re learning and the new treatments.
Adam: [13:24] That’s right, that’s right and you know a little self-promotion here, a great way to do that is all of the Komen resources that are available, the website, this podcast. There’s so many resources that are available to you, listeners to stay up to date with what’s currently happening. I’d highly recommend you look into those.
Pam: [13:41] Right.
Adam: [13:41] Pam, this has been a really fantastic interview. I really admire your courage to stand up for yourself, your courage to know who you are and to know your own body and to know what’s right for you. It’s really very inspiring. I really appreciate the journey that you’ve been on and thank you so much for sharing it with us.
Pam: [14:01] Thank you.
Susan G. Komen launches the MBC Fund!
Susan G. Komen is proud to launch the “MBC Fund” specifically designed to spur scientific discoveries and support those women and men living with Metastatic Breast Cancer, building on Komen’s $210 million investment in metastatic breast cancer research. For more information on the MBC Fund and how to support it, visit www.komen.org/MBC.
Into Thy Heart by Ivan Chew. Ad music is Blue Skies by Silent Partner. The Real Pink podcast is hosted by Adam Walker, produced by Shannon Evanchec and owned by Susan G. Komen.