Karen Durham, Advocate In Science
Karen was an integral member of the Komen family, and we are proud to share this special episode. She will be dearly missed.
“I have a daughter. And I don’t want my daughter or anyone else’s daughter or son to ever hear the words, ‘You have breast cancer’.”~Karen Durham (July 7, 1951 – March 26, 2018)
Hosted by Suzanne Stone
A proven leader in building long term community partnership opportunities, Suzanne Stone brings innovative ideas to support Komen Greater CETX’s mission in fighting breast cancer. Stone has gained experience in outreach and education, volunteer programs, donor development and fundraising over her professional career. Stone earned her Bachelor of Science degree in Radio, Television and Film from Texas Christian university and is certified in non-profit management. During her free time, she enjoys going to the beach to catch waves on her surfboard, paddle boarding and watching baseball games.
Karen: (00:05) I have a daughter, only child is my daughter and I don’t want my daughter or anyone else’s daughter or son to ever hear the words, you have breast cancer.
Suzanne: (00:19) Time is precious, time flies. So many sayings and so little time. The older we get the more fleeting it seems to become. A diagnosis of breast cancer not only freezes time, it accelerates its passing. The gift of time suddenly becomes a very precious commodity. I’m Suzanne Stone and this is the More than Pink podcast. Karen Durham thought that she had plenty of time. Diagnosed with breast cancer she was treated like so many others and time certainly paused, but then it started flying. She became involved with Susan G Komen. She’s a board member at the affiliate in Tyler, Texas. She sits on Komens advocates and science steering committee and she chairs its committee on advocates and peer review. So many other achievements, so many other accolades, but out of all of them I think her favorite one is being a mom. Sometimes your journey really puts a different perspective and might change where you head in life, and I think that might’ve happened to you.
Karen: (01:33) It did. I was originally diagnosed in December of 1989 at the age of thirty seven years old, I went through my surgery, my chemotherapy, my reconstruction and everything was really fine until nineteen years later December of 2008 is when I was diagnosed with stage four metastatic disease.
Suzanne: (02:04) Nineteen years.
Karen: (02:05) Nineteen years so even though they tell you after five years you’re pretty much say you still need to be very diligent because there are more and more really late diagnosis of metastatic disease.
Suzanne: (02:25) So nineteen years later, I would assume that at that point you’re not even thinking about breast cancer anymore.
Karen: (02:33) I’m really not. I had to go to my oncologist once a year. I was never released from that, thank goodness but yeah, it just wasn’t on my radar then.
Suzanne: (02:46) What were you doing with life during those nineteen years?
Karen: (02:51) Well, I progressed in my job. I worked for the Federal Aviation Administration and I became a manager at the communications unit at Dallas Fort-worth Tower, so I had a really stressful job. I played softball two nights a week. I finished raising my daughter and just, life went on. I was very, very active and the thought, really never occurred to me that something like this was going to happen.
Suzanne: (03:21) So your doctor tells you that not only is the breast cancer back, but it’s back with a vengeance this time.
Karen: (03:29) That’s what she told me and I had been a Komen advocate in science and a Komen scholar for many years and when she pulled up her little stool and she told me that I had stage four disease she said there was a blank look on my face and then she said, “Karen, you have metastatic disease now.” And she said it was still just blank and she rolled her stool over to me and she took hold of both of my hands and until she put the words all together, it did not register. She said, “Karen, you have stage four metastatic disease. We’re going to have to fight to beat this.”
Suzanne: (04:13) How long did you stare at her?
Karen: (04:15) A long time.
Suzanne: (04:18) I cannot imagine those words, especially when you have been essentially cancer-free for almost two decades.
Karen: (04:30) Yes.
Suzanne: (04:30) So clearly your life changes at that moment.
Karen: (04:33) Oh yeah, absolutely it did. I had already retired from my job though, thank goodness and my husband and I had moved to a small community outside of Tyler, Texas and I was under the care of a wonderful oncologist in Tyler, even though it’s considered a small community and I felt very comfortable with her and her recommendations of treatment and I did not feel like I had to go anywhere else or I did not feel like I needed a second opinion at that point.
Suzanne: (05:10) Tell me how was your experience as a Komen scholar. How did that add to that? It had to make a difference in that comfort level. You may be knew more than the average breast cancer patient.
Karen: (05:26) Yes and that parts kind of scary also when it’s your diagnosis because I know more of what’s out there. What’s not working and how far we still have to go and the average person really doesn’t have all of that knowledge. But I also know how many strides we’ve made forward and how far we’ve come from 1989. Back then there was only four drugs that treated breast cancer, four and that was it.
Suzanne: (06:03) Not many options.
Karen: (06:05) Well, you got those or you didn’t get anything. All they knew was hormone receptor positive. They did not know the other subtypes back then.
Suzanne: (06:16) So you’re diagnosed with metastatic disease and you know way too much.
Karen: (06:20) That’s right I did know way too much.
Suzanne: (06:24) So let’s think about today and perhaps there’s someone listening to this podcast listening to you and how is her experience different sitting with the oncologist and getting that news different from what happened to you?
Karen: (06:42) I think that a newly diagnosed metastatic patient probably does not know the questions to ask about their treatment, about their prognosis, about what’s going on, what’s in the future for them so I think in that respect it’s kind of a disadvantage because they don’t know what to ask.
Suzanne: (07:08) What should they ask?
Karen: (07:11) Well, all of those things. They should get a very thorough explanation, but then again it’s also overwhelming just like an original diagnosis that you can’t absorb it and take it all in. You definitely need somebody with you to help you take notes and listen, another set of eyes and ears. You need to ask different treatment options that are available because there are so many options out there today and people definitely need to ask about clinical trials.
Suzanne: (07:52) So let’s talk for a minute about those treatment options before we get into those trials. What is the treatment regimen like for you today and what can a newly diagnosed metastatic patients expect? Is that the same treatment for everyone?
Karen: (08:12) Oh no, it’s totally different. There are so many targeted therapies out there today that targets the specific type breast cancer cells you have, where they’re located in your body and they have sophisticated, diagnostic testing of your blood that can tell if you have defective what they call pathways or something has been damaged in your DNA that they can target that, so it’s just …
Suzanne: (08:45) It’s like a personalized cocktail.
Karen: (08:46) It is, just about.
Suzanne: (08:49) So what type of cocktail, if I can ask, do you have to deal with every day and are there side effects to that? do you just get to go on with your regular life and take a couple of pills and not tell the difference?
Karen: (09:04) No, it’s not quite that easy. I’m on my sixth treatment regimen since I was diagnosed as metastatic. A metastatic patient stays on a treatment until it no longer works or they are responding very, very well and if their tumors shrink and they’re totally under controlled. You might get a drug holiday for a short period of time where you don’t have to take anything but for the most part for a metastatic patient, you’re in treatment forever. You stay on one treatment till it quits working for you and then you go onto another one and it just keeps going like that. The one I’m on right now is all pill form. It’s three pills in the morning and three pills in the evening. It does have side effects.
Suzanne: (10:02) I can imagine that’s a little different than the multivitamin.
Karen: (10:06) It’s different.
Suzanne: (10:10) A little different than that daily chewable thing.
Karen: (10:12) Right.
Suzanne: (10:13) Certainly. So I suppose that the reason why clinical trials here are so important is because of these different regimens, so you’re on six. Talk to us about clinical trials. How do I get in and why do I want to be in one and what if I get a placebo and not the real drug?
Karen: (10:34) Okay. That’s a big misconception. With a clinical trial, you will always get standard of care. You just may get an additional drug or the placebo, but you will definitely get for sure your standard of care. You’re not being denied the treatment that has been already approved and I think it’s less than 10% of adults with cancer participate in clinical trials, and the majority of them give the reason they don’t participate is they’ve never been asked. The huge institutions and huge cancer centers are well known for their clinical trials, but the majority of the patients are treated at community cancer centers, and sometimes the clinical trials don’t trickle down to them. I’m very fortunate that my community cancer center is under a big umbrella that’s nationwide and they do have access to all the clinical trials that are available. I’m on my fourth clinical trial now.
Suzanne: (11:49) Wow.
Karen: (11:49) If people do not participate in the trials,new drugs will never be approved by the FDA to be used as treatments. And yes, not every drug is going to work and not every drug whether it’s approved or not, it’s going to work for every patient, that’s just a given and even if you’re on a target in therapy, there’s no guarantee that whatever drugs you’re taking are going to work for you. What works for one person may not work for another.
Suzanne: (12:27) Very challenging space in clinical trial medicine and we’ve had an opportunity to talk to a lot of researchers in this podcast who are looking into really incredible groundbreaking kind of things, and they all talk about the challenge of the clinical trial.
Karen: (12:49) That’s what I keep hearing and whoever is sponsoring the clinical trial, be it a drug manufacturer or be it a large institution or research facility, they’ve got to trickle that down to the community practices. Somehow they’ve got to figure that out because that’s where the majority of the patients are treated.
Suzanne: (13:16) So for people who are listening, we’re going to put up on our podcast page a link to where you can go and look for a clinical trial that might just be right for you. Is there anything that you should be fearful of? I mean would these extra drugs hurt you somehow?
Karen: (13:36) They can’t possibly, but your oncologist is going to give you the side effects of both the standard of care drug and also the clinical trial drug. Every drug out there has probably some side effects. Some are more severe than others and the patient just needs to make an intelligent decision. If they think that participating in that clinical trial and whatever that particular drug is, would be beneficial to them. They need to make that decision with their family and also with their oncologist and their care team.
Suzanne: (14:16) So in these clinical trials do you have to be a metastatic patient to participate?
Karen: (14:23) No, you do not. A lot of them though are designed strictly for metastatic patients.
Suzanne: (14:29) It’s certainly a focus.
Karen: (14:30) It is a focus, but there are clinical trials out there for people that are not metastatic.
Suzanne: (14:39) So will the link that is on our webpage right now you can absolutely go there and get that clinical trial information for all kinds, not just metastatic.
Karen: (14:50) You should be able to. Which link do you have on your website?
Suzanne: (14:55) I don’t know. I’d have to go cheat.
Karen: (14:57) That’s okay. It should have whether it’s early stage or metastatic and if it’s the one I’m thinking of, it probably also has other diseases besides just breast cancer.
Suzanne: (15:13) So it’s so interesting that you would think there would be a line to sign up for clinical trials, but I think there’s a lot of misinformation around that.
Karen: (15:24) There is and part of it is people think they’re a guinea pig and they’re going to get a placebo. They’re not going to get real treatment, but that is absolutely not true. You are going to get the standard of care regardless of which arm you are on on the clinical trial. You just make it additional care.
Suzanne: (15:44) Living with metastatic disease is different. I would have to assume in fairly profound ways then living with a diagnosis of stage two breast cancer.
Karen: (15:57) Yes.
Suzanne: (15:58) From a patient perspective you’ve done both now.
Karen: (16:03) I have done both.
Suzanne: (16:04) What are the challenges for someone like me who thankfully isn’t a part of this club.
Karen: (16:14) When you’re diagnosed early stage you know exactly what your treatment’s going to be. You have a start date and you have an end date and then you know what your followup visits are going to be. When you’re metastatic you have a start date, you’re on treatment until it doesn’t work anymore then you go off with that treatment. You start another one. The cycle just continues on and on. You never have that end date.
Suzanne: (16:47) So without the end it feels like you’re starting over all the time.
Karen: (16:53) It does. Every time you start a new treatment you are basically starting over because you may have gotten adjusted to whatever your drug regimen was and then you go on a new drug regimen, your side effects are going to be different. Your body adjustment to that drug or those drugs, is going to be different. It’s just a whole adjustment period and the majority of metastatic patients are scanned either with a CT scan or a PET scan or an MRI every sixty to ninety days to check for disease progression. That’s a lot of scans.
Suzanne: (17:33) You’re in the doctor’s office a lot.
Karen: (17:35) A metastatic person is in the doctor’s office a lot.
Suzanne: (17:40) Talk about if you can, we’ve also heard in some other podcasts people talking about support and then somehow that lack of support as you watch your social circles maybe grow and then shrink.
Karen: (17:56) I think originally your social circle grows because everybody has that sympathy and empathy in caring, but then as time drags on, yes they still care about you, but it’s not with the intensity because they see you going on and on. Like I’ve been doing this for seven and a half years now and yes they’ve seen changes in me. They see me go downhill, they see me come back up hill in the cycle of that, but they don’t have the level of intensity that they do at the very start.
Suzanne: (18:37) I would think that that might be difficult as your journey maybe gets harder emotionally.
Karen: (18:44) It is because when your journey gets harder, you need more support and more caring around you and the people have just, I don’t know, they used it up and that’s not really a good term, but that’s kind of what happens.
Suzanne: (19:03) What advice would you give to those family and friends of metastatic patients.
Karen: (19:10) To not ever, ever, ever give up because the best drug for that patient may be available tomorrow. We just don’t know. There are so many new drugs that are right out there just over the horizon and the best one for that patient may be tomorrow.
Suzanne: (19:30) So there’s still hope and you believe that?
Karen: (19:32) Absolutely, there’s hope. Do not ever give up hope. We have brilliant researchers out there and you’ve talked to some of them on the other podcasts that are on the verge of groundbreaking science coming out to treat metastatic disease so you just can’t ever give up hope.
Suzanne: (19:55) Karen, one thing that I also think is really interesting is you took your battle with breast cancer even before you became metastatic and you changed what you were doing and you became associated with Komen to the level that you were influencing a giant organization and it’s interesting to me that some people choose to do different things with this diagnosis. Was there something that motivated you specifically to take your commitment to changing breast cancer to the next level?
Karen: (20:34) Yes ma’am there was. I have a daughter, only child is my daughter and I don’t want my daughter or anyone else’s daughter or son to ever hear the words, you have breast cancer.
Suzanne: (20:48) Everybody deserves to grow up with a mom and a sister and a daughter.
Karen: (20:57) They do, and a son because it doesn’t just affect women. Men can get breast cancer also.
Suzanne: (21:03) Life is fleeting, we all want more time to laugh and dance. See the world and our kids have kids. Living with metastatic breast cancer is a life sentence that ends just one way. It’s time to change that. Karen and so many others are doing everything they can to make sure it does because everyone deserves to grow up with a mom.
(21:32) I’d like to thank iHeart media for making this and every single More than Pink podcast possible. Thanks Mike, for making it sound so great. Thanks to the Komen Austin team, my intern, Jacqueline and everyone who helped to put all of these pieces together today. Susan G Komen, Austin is an affiliate of Susan G Komen Breast Cancer Foundation.
(21:55) If you need resources, information or just have a comment about this episode or any episode, reach out. You can find us at email@example.com or just visit us on line komenaustin.org, easy to find. We’ll talk to you next time.Until then Be More than Pink.
About the More Than Pink Podcast
The More Than Pink Podcast is designed to give listeners an insight on what is happening in the field of breast cancer research, treatment, screening and survivorship. Through each episode, experts in various fields share their knowledge directly with you through guided conversations on a variety of topics. If you have any questions, or comments, please email us at firstname.lastname@example.org.
Special thanks to Hologic and iHeartMedia for making this episode possible.