Studies show that there is a disconnect between the type of support MBC patients believe they need vs. what care partner believes that patients need. Because of this, communication is of the utmost importance.
Meet Janice and Rex
Rex is a Midwesterner; born and raised near Lafayette, Indiana. Following high school graduation, he enlisted in the Army, serving three years at Ft. Bragg, North Carolina. It was during this time that he and his future wife began corresponding, and then dating, eventually marrying two years following his honorable discharge in 1977. While enlisted, one of Rex’s jobs was working as a Cartographer. Deciding to build upon this skill, he enrolled in a newly created Civil Engineering Technology program at the University of Houston. While living in Houston, Rex and Janice added to their family with the birth of their daughter.
Following college graduation, Rex, Janice and their new daughter returned to their midwest roots for Rex’s career. He briefly worked for an engineering firm in Indianapolis, Indiana before accepting a position in Dayton, Ohio with a top 100 Engineering firm. During his 31 year career, Rex held the positions of Partner, then Chief Operating Officer, President and CEO for 11 years prior to retiring in September 2011. Five years prior to retirement, Rex and Janice relocated from Ohio to sunny Florida, while Rex continued to work from his company’s Orlando regional office. Just prior to retirement, Rex began researching and planning for a new hobby – hiking. He began by section hiking the Appalachian Trail I 2010, taking vacation time to complete two weeks of hiking each time.
In a span of three weeks during September/October 2011 life would forever be changed when Janice was diagnosed with Stage I breast cancer. In the midst of selling their Orlando home and moving an hour north to Lady Lake, a routine mammogram led to an ultrasound, then biopsy, with a diagnosis of triple-negative breast cancer. Their plans for traveling the world in retirement would need to be put on hold. The first 6 months of retirement meant taking on a new job for Rex, as Janice’s caregiver. Within a year, Rex resumed planning and hiking.
During the next five years, they would see their daughter married, have their first grandson in 2015, celebrate the marriage of their son and add another grandson at the end of 2015. They enjoyed traveling to see their children and grandchildren in Colorado and Ohio. Unfortunately, retirement life would once again come to a halt in June 2016, when during a routine appointment, Janice’s Oncologist recommended a PET/CT scan to rule out recurrence of breast cancer, after she reported some unusual pain and fatigue. The news of her Stage IV Metastatic TNBC shook them to the core. Travel plans and hikes were immediately cancelled. Once again, Rex would dive back into caregiving while Janice underwent chemotherapy and radiation. Fortunately, with Janice’s exceptional response to treatment in 2016, and remaining no evidence of disease for nearly 4 years, they’ve been able to resume traveling, and have since added a third grandchild, their only granddaughter. And, Rex has returned to his love of hiking. To date, he has completed the Appalachian Trail, Colorado Trail, John Muir Trail, as well as sections of the Continental Divide Trail, and several others. But, due to Janice’s MBC diagnosis, they live and plan from one scan to the next 6 months later.
In October 2020, Rex and Janice will celebrate their 41st wedding anniversary. Besides hiking, Rex enjoys spending time with family, finances, politics, golf, and other outdoor activities.
Support for the Real Pink podcast comes from Lilly Oncology. People living with metastatic breast cancer or MBC deserve more. Lilly Oncology aims to bring more awareness of MBC through more education, more research and more dedicated solutions to support the women and men living with MBC and the communities that surround them. Learn more at the More for MBC Facebook page. 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 today.
When someone is diagnosed with metastatic breast cancer, it’s a scary and confusing time for both the patient and their loved ones. Care partners often wish they had more information on the physical and practical impact of the treatment journey on the patient and the emotional impact on both patient and care partner studies show. There is a disconnect between the type of support MBC patients believe they need versus what the care partner believes the patient needs. And because of this, communication is of the utmost importance. Here today to share what they have learned throughout their journey together are Janice and Rex Cowden. Janice and Rex, welcome to the show.
Hi, thank you, Adam. Good to be here.
So pleased to talk with you. I love being able to talk with both of you. It’s pretty exciting. And so let’s, let’s just hear a little bit about your story. Where do you want to start?
Well, I’ll start with the fact that I was diagnosed with stage one triple negative breast cancer in 2011, no history of breast cancer in our family. So it came as quite a shock. And so I went through treatment, had a lumpectomy radiation chemotherapy with triple negative. It is the likelihood of recurrence is, is very high. It’s a very aggressive type of breast cancer. So I had had a Mammoprint done and it said I was high risk for recurrence. So the first couple of years, you know, very fearful fear of anxiety. You know, anxiety, fear of recurrence was, was really high. And once I got past two or three years, my oncologist, myself, my husband, I think we sort of thought we were in the clear and then at a routine annual appointment in 2016, I had complained of general fatigue and bone and joint pain.
I was almost five years out from my early stage diagnosis. So my oncologist suggested doing a pet scan, and in his words, “I don’t expect to see anything, but let’s just do one just in case.” And there it was. So I had very limited metastasis in nodes, only at my stage four diagnosis, but it still came as quite a shock because if you can get to five years after early stage, triple negative breast, generally the risk starts going down. Unlike other receptor types where it can escalate. You know, if you’re the hormone positives 10 years out, 20 years out, your risk of recurrence can actually go up. They came as quite a shock to us. I think it was something that we were very unprepared for as most early stagers will tell you the oncologists don’t speak to their patients about metastatic recurrence. And in my mind, if I were to have a recurrence, I expected it to be local or regional. Maybe I’d come back with, another mass in the same breast, or I might have some lymph nodes. Maybe it would be stage two next time progression thing. I did not know that you could go from stage one to stage four, no knowledge that it could go from stage one to stage four.
It sounds like that’s kind of what you wish you knew about it. So the Rex let’s talk about what you wish you knew about the diagnosis and the treatment of MBC when Janice started treatment.
Well, just to follow up on what Janice said correct me if I’m wrong, but what percentage of women with breast cancer get diagnosed with metastatic?
The best guess is that one in three or 30% will have a metastatic recurrence. And that is from stage zero, which is DCIS stage one, stage two, stage three. And it’s just not something that is talked about. Early stagers are not educated about that.
I guess, along those lines, I wish I would have known that. And you know, a little bit about my background. I mean, I’m an engineer time. So we as engineer types were numbers. And so I like to know what the numbers are because it gives me a reference and we’re problem solvers. So, you know, we’re trying to figure out exactly how to solve this problem. It’s not one of those problems. That’s, I’ll say solvable. But if I, if I think if we would have known the chance of metastatic earlier on, I think we would have been better prepared. That’s probably an overstatement too. I mean, I don’t think anybody is anticipating it’s going to happen. I like Janice said, we thought we were out of the woods reaching the five year point, which was a milestone for triple negative.
Yeah. Wow. That makes a lot of sense. And so direct back to you one more time here to talk a little bit about why open communication between partners is so critical. And is there anything you wish Janice would have talked to you more about through this process?
Well, I think we may be a unique situation here at Janice as a nurse. She worked as a pediatric nurse for 20 years. She’s also a researcher. I mean, she just loves researching the medical aspect of things. So naturally when she was with breast cancer to begin with, she did a lot of research and through that research, she was always educating me. So it wasn’t something that I had to necessarily research myself. So I was thankful for that as it relates to her being able to communicate back to me and we were very open about all these things. I think one of the things that I tried to do best was asked questions, practical, objective questions, back to her, which probably led to more research on her. I mean, she was loving it
That’s great. That’s great.
She wasn’t looking at it from a doom and gloom perspective. She was looking at it kind of like a problem solver too. I mean, I want to know as much about this disease as possible so that I can ask the right questions. And I guess that’s where I wanted to be wanting to ask the right questions to her doctors. I think you’d be prepared before you go into meetings is so essential. So open dialogue between she and I in preparation for those visits with doctors, I think was really critical.
Yeah. That’s wonderful. So I’ve heard, there’s often a disconnect between the patient’s needs for physical support and care in the partner’s belief that the greater need lives in sort of the informational facet. Janice, why do you think there’s a gap here and how have you and your caregivers supported you?
That’s a great question, Adam, I guess for me, you know, the disconnect between what a patient needs comes down to a knowledge gap. It’s not the patient’s fault. It’s not the caregiver’s fault. I think until you’re in this situation, you don’t really know what to expect and what your needs are going to be. For instance, with triple negative. You know, at, at the time when I was diagnosed, really the only available treatments were chemotherapy for early stage. I actually had worse side effects with the chemotherapy regimen that I was given for stage one. Then I did with stage four. So we were both kind of pleasantly surprised. Rex was also very responsive. I mean, he is a caretaker naturally and being, I refer to him as the King of spreadsheets because I was on so many different medications just to address the side effects. And the spreadsheet literally said, you know, I was alternating anti-nausea medications every three hours around the clock for about five days after each round, I was feeling so poorly that I couldn’t manage it.
Being that type of person, I think made it very different in our circumstance. I think for caregivers and spouses, that don’t really understand what to expect. And maybe they’re not in that mindset of how much care a patient is going to need. When you go for your first, if you’re getting chemotherapy, you go for your first appointment, they do chemo school right before they load you up with your drugs. Well, that’s like a five to 10 minute span of everything you need to learn about the treatment you’re going to get. And you’re already feeling anxious enough that you can’t, you know, as a caregiver.
Well, in early stage, she wasn’t in. Unfortunately they gave me my premeds. They gave me 50 milligrams of Benadryl and then did chemo school. So I wasn’t aware of any of it. So that just goes to show you, you know, things could be done differently, but you know, I think when that treatment plan is put into place and you’re at that appointment with your oncologist, they discuss what your treatment plan is. In my opinion, that is the best time. And whether it’s one of the infusion room nurses and nurse practitioner, PA oncologist, who spends the time doing it, that is the time to go over your treatments. And with metastatic breast cancer, I’m going to say most people because the majority are in treatment for the rest of their lives being triple negative. I was very fortunate. I had a complete response to my first line of treatment.
There were no maintenance medications I’ve been on no treatment since November of 2016. I’ve been no evidence of disease for that long. And that’s rare for those who are going to be on treatments. And even when they have to change treatments due to the fact that they’ve had progression and that treatment has failed. I think more information could be given about not only the treatments, but you know, these are the potential side effects. And then that way it gives the patient and the caregiver an opportunity to ask questions. Well, how do I address this? What if we go home? And she has 101 fever, what do we do? Who do we call? And I think as the person who’s experiencing the symptoms of disease or the side effects from the treatment, you feel that need for an increase in the physical caregiving and some caregivers just, they don’t know what to do with that. They have no idea what to do with a, a spouse or a, you know, a relative or a loved one that is experiencing fatigue to the point where they literally can’t get out of bed. They’re not prepared on how to best do that. And a lot of people aren’t good at asking for help.
Well, let, let’s, let’s dive into that actually just for a minute. And if you don’t mind, so, you know, Janice during this process, did you ever have to ask for more or different support and you know, how did you go about that? And how did that go?
There was only one time when I feel like I had to go down a path that I really didn’t want to. But I think before we really understood that the fact that metastatic breast cancer is incurable and terminal. I think most of my, my relatives probably thought, well, you know, this is something we’re gonna, we’re going to attack it. You know, the typical statements, you know, you’ve got this, you’ll be fine. I don’t remember exactly what the situation was. But I finally said, look, here’s the deal. This is terminal it’s incurable. I’m not going to beat this. This is going to kill me. And the median overall survival for metastatic, triple negative is less than two years. So when I was diagnosed, honestly, I didn’t expect to be around by 2018 or much longer than that. So it was kind of a come to Jesus conversation.
Yeah. Yeah. That makes a lot of sense. And Rex, what advice would you give people in terms of how they can communicate and how they can support a family member or friend? Are there any resources or practices that you’d recommend?
I think to start out with, I want to follow up with what you asked, said the caregiver and everybody around them, they really need to listen. Just don’t say anything. Just listen, ask open ended questions. And I do think that it’s so critical to let the person with metastatic do the talking. I agree with her. I mean, the last thing they want to hear is everything will be okay when the reality of it is it’s not going to be okay or probably not going to be. Okay. So it comes across as Pollyanna, I think is a term that she’s used before. Maybe even to the point of condescending, I guess.
I think it’s invalidating, honestly, it just invalidates that person’s feelings.
Yeah. So I think that is really key. And one of the resources I’ll give you, I was asking her right at that time, there’s a play that Janice participated in as an actor and that they put on at some of the conferences. This was written by a professor at Mercer university down in Macon, Georgia. His name is Andrew silver and his wife died…
In 2018. Yeah.
And so we put on this play that’s that talks about metastatic breast cancer from patient’s perspective and they get into this and each one of the participants, the actors go back and forth with each other and talk about what took place in their lives. And it was really good. I mean, it’s a pretty hard look at metastatic breast cancer from a number of different topics, but it’s very real. And in there they talk about, you know, don’t tell me it’s going to be okay. And other things that, that a lot of people unintended say, but it comes across wrong. Another reference for me is I attend, I’ve attended numerous conferences with her and there are some sessions strictly for caregivers. And that was beneficial to me too.
Adam (15:02): That’s great. I’m curious, you know, we talked about just for a few minutes about what not to say, what would you advise someone to say, especially when they’re just, aren’t sure what to say?
Again. I think it’s more important to ask questions and then based upon the response that you get, then I think there may be some things to say, but I’m not so sure. Some of it’s really kind of walking on eggshells and I don’t mean that in a negative way
In their position, I can understand, you know, why it’s probably inappropriate to do that. Ask questions, you know, why, why are you feeling that way? A lot of open-ended questions because I think that will help me as a caregiver to be able to respond from an encouragement perspective.
Yeah. That’s fantastic. I appreciate that perspective a lot. Yeah. Ask, ask questions and listen actively. So last question, Janice, what advice would you give people on how to allow someone to care for them?
You have to understand that your caregiver, regardless of who it is or caregivers, they are not in your shoes. They can’t read your mind. They don’t know how you’re feeling. They don’t know what you need or what you want. Sometimes you don’t know what you need or what you want. If a caregiver says or asks you, what can I do to help? You need to be honest, it could be leave me alone. I don’t want to see you the rest of today. It could be, I’m going to lay in that bed. Don’t come in here. Don’t ask me anything. Don’t ask me any more questions. It could be. I need you to help me do something very specific in the same with friends. If you don’t tell them specifically what you need or what’s going to help you, they can’t know. They just can’t, they’re guessing. And then they get frustrated with, they feel bad because they don’t know how to help you. And they really don’t know how to help you. So I think being honest, think about what would be helpful for you, and then tell that person just, you know, be up front and say, you know what, right now, this is what I need, or this is what I want. And it may just be to have that person sit beside you say nothing and just be there.
Wow. That’s really fantastic advice. Just be honest, even if it’s not easy, if it may, may not be what they want to hear, but just be honest about where you’re at. And I think what you said too about recognizing that they don’t understand where you’re, where you’re at. I think that’s really, really, because I can tell you, I, I don’t understand. And I think a lot of people don’t understand and that’s, that’s part of why we do this podcast. Rex, Janice, thank you so much for your time. Your supportive one another is inspiring. Your story is inspiring. Thank you for sharing that with us.
Thank you, Adam. Thanks.
About This Episode
Intro and outro music is City Sunshine by Kevin MacLeod. Ad music is Trusted Advertising by David Renda licensed from Fesliyan Studios Inc.