It is estimated there are more than 168,000 women living with metastatic breast cancer in the U.S. in 2020. Janet Robinson is one of these. She was diagnosed 5 years ago with breast cancer after discovering a dent in her left breast. She has since had 2 recurrences and 2 years ago she was diagnosed with MBC. Today Janet will share with you how a second opinion saved her life and how she has found hope even with a MBC diagnosis.
Janet Robinson is a wife, mother, and grandmother. She retired from a career as a preschool teacher and is a small business owner along side her husband.
It’s estimated that there are more than 168,000 women living with metastatic breast cancer in the US in 2020. Janet Robinson is one of these. She was diagnosed five years ago with breast cancer. After discovering a dent in her left breast, she has since had two recurrences and two years ago, she was diagnosed with MBC today. Janet will share with you how a second opinion saved her life and how she has found hope even with an MBC diagnosis. Janet, welcome to the show.
Thank you so much, Adam, for having me.
So nice to talk to you. I’m really excited to hear your story. So let’s start just tell us a little bit about yourself and about your breast cancer journey.
Okay. Well, a little bit about myself. I’ll share the joy with you. First. I am married to the most incredible husband. I have two children. They’re both grown out of the house. I have an excellent son-in-law and I have the most adorable four year old granddaughter. Her name’s Riley Marie. She’s my heart. She’s just my heart. That’s my joy. I am a retired preschool teacher. I taught in a Christian school four year olds, best age. And for many, many years, my husband and I, we have a small business. I am also a cancer mentor and most of all, Adam, I am a child of God. I am a child of God. So that’s my joy. I am also a breast cancer patient. I am a breast cancer survivor and I am a breast cancer thriver. I will give you just a little bit of the highlights of where I’ve been in 2014 in October, I came out of the shower and discovered I had a dent in the side of my left breast, and I thought, Hmm, that’s weird.
I wasn’t really concerned about it. I had my annual appointment a few weeks later. I thought I’ll just show it to the doctor. See what she says, right? And she looked at it. She wasn’t sure what to make of it. So she sent me to a breast cancer surgeon. I wasn’t concerned. I wasn’t concerned at all, because from what I knew, the way you find breast cancer is with a lump. You find a lump. This is a dent. I wasn’t really worried. I had no family history except for my first cousin, a very brave lady who had breast cancer, nobody else. And I did my mammograms. I did my testing. I did everything. I wasn’t worried. So we went to the surgeon, he did a biopsy and he said, Nope, it’s not cancer. And this was at Christmas time, my husband and I thank God.
And we went and celebrated Christmas, six months later, I noticed there was changes in the breast and it started with pain. It went to swelling. And then the breast turned into what they call the orange peel. I called him immediately. I’m like, I got to get in. I went in for my appointment and I heard the first of two very words that I’ve heard over the last five years. And as he examined me, the two words were, “Oh, wow.” Okay. That can’t be good. No matter what you say. “Oh, Wow.” Isn’t that good. A month later, I was diagnosed with stage 3B triple positive, breast cancer, 3B. Wow. That was pretty high. So they came to me with the game plan of chemo surgery, radiation. Okay. Okay. I’ve got this. Let’s get to work. The scan showed that it wasn’t anywhere else just there, but there was 12 centimeters of cancer in that breast.
So we’d have to work. We did the chemo. I did a mastectomy and it, when they took the breast off, they realized only about half the cancer was gone. So the chemo kind of worked. So they wanted me to do more chemotherapy at that point. Lymph nodes remove radiation on and on. So past that time, and I’m going to read this to you. I did this calculation of what I’ve done between that and metastatic breast cancer. Since I was diagnosed, I did have done nine different chemo drugs. I’ve done 60 radiation treatments. The markers of my cancer has changed three times. I was triple positive. I was triple negative right now. I am estrogen positive her two negative. I’ve had six surgeries. I’ve done 22 months of an open wound. I’ve had 17.5 centimeters of cancer in my body. I’ve had a second opinion. I’ve had a third opinion. I’ve done six biopsies. I’ve had five scars. I’ve had recurrence twice. I’ve lost my hair three times once, just as it was just coming in. I’ve had two lymph nodes involved and I’ve had two very scary diagnosises. And then in December of 2018, I was diagnosed with stage four metastatic breast cancer. And when I tell it all led up, Adam, honestly, I was like, how did, that’s just the grace of God that I got through all that.
Wow. That’s remarkable. And so you mentioned you’ve had recurrences, obviously it’s been a long journey. I mean, can you tell us, how do you navigate the emotions each time you’re having a recurrence or in you’re starting to go through that process?
My first recurrence happened four months after I had finished my first rounds of treatment and my cancer always presents itself. It’s not anything that has ever shown up on a scan like, Oh, there it is. My scans are always clear, but mine always kind of present themselves with a bump here or there, or, you know, just different things like that, that I’ve noticed. The way I deal with the emotions is I ask a lot of questions. You can ask oncologist. I ask a lot of questions. I got really good advice from a dear friend when I was first diagnosed. She said, get a calendar to write everything down and write questions down. And I do that. I do that faithfully. And I just ask the questions and she has learned how to answer me very simply. I’m not an MD, I’m a preschool teacher. I’m not an MD.
And so go into my doctor with questions. She’s always been diligent about asking, answering what I need to have done. Also, I have a mentor who is a breast cancer survivor. Who’s gone through recurrence and she’s been amazing to me with understanding where, where I’m coming from and, and talking to me and knowing that I’m talking to someone who’s gone through, it has a huge turn for me. And I also have a counselor at my cancer Institute and he is my biggest cheerleader. He is my biggest supporter. We’ve worked together for three years and I can tell him, or my mentor thinks I can’t tell my husband. He doesn’t get it. They do. I find that’s really, really important. And finally, I just do my research. I read a lot of books. I don’t get much from the internet. It’s too scary. It’s just too scary. So I read a lot of books about it and a lot of prayer, a whole lot of prayer.
Yeah, that’s good. That’s all really, really good advice. I really appreciate that. So I understand initially you were treated locally, but due to the uniqueness of your cancer, someone in your circle suggested that you get a second opinion. How important did that turn out to be for your treatment plan?
Oh my gosh, Adam, I’m still glad you asked me that question because this was really, really important. When the cancer moved into my skin, my local oncologist, she was unsure really what to do with it. She had seen people who had had it moved in the skin, but she’s never treated anybody. And she had earlier in my diagnosis told me that if I wanted to get a second opinion, I should, this was in January before I got recurrence. So I said, I don’t know where to go. Where do I go to get a second opinion? And she see, it said, you need to go to Duke. And I went, Oh, okay. I think I’m really sick now. So I went to Duke and that oncologist here locally was the one who set me up there. She found me a world-class doctor there. She got me an appointment.
In three days later, I was driving to Durham. I went to see that oncologist not really thinking anything was coming up. I just wanted her to say, I’m doing the right thing. You know, I told you I have that adorable granddaughter. I have a lot to work for. And so she said, they’re doing everything right. I would change one thing, go home. You’re being taken care of. And Oh my gosh, what a relief. That was eight months later when it came into my skin, because I had done that initial second opinion. My oncologist locally said, I’m not really sure what to do. You need to go back to Duke. I had already been there. I was in their system. I had met this doctor already. I went up there, she looked at it and she said, Oh, I know exactly what to do. I mean, not even a blink out of her. Wow. Yes. And so to do later, I was in the chemo chair at Duke a month later, I could see the bumps disappearing. Wow. Yes. So I think the importance is just in many things that you can in your tool belt.
Yeah. I love that. That’s such a great perspective. And, and so I’m curious, and maybe you just answered this, but what I mean, what’s the biggest takeaway. What’s the biggest lesson you learned from the process of seeking out the right doctors and specialists?
You know, it, it’s interesting that you say that because I went to my doctors locally, my gynecologist referred me to them. I love them. And I trusted them and things just started to get out of their league. And one thing I didn’t understand is when I went to Duke, my oncologist only handles breast cancer. My local oncologist handled all cancers. So that’s where the special tests comes into play, where this is all she does. And I never really thought really how important that is to have that specialty behind it. You know, that first oncologist who referred me up there, she saved my life by getting the second opinion and going somewhere else. And I’ll tell you, it was not easy being traded up at Duke. It’s four hours from here, but it saved my life. I know I wouldn’t have been here if that first oncologist didn’t refer me up there.
Wow. Well, that sounds like a really fantastic oncologist. That’s willing to do that. So talk to me a little bit about how living with MBC affects your life today. How, how do you make the most of your time?
Well, once I got past the diagnosis and I realized, you know, now that I do the pill, the shot I’m living much better than I did the three years when I was in all those other treatments, I changed my life pretty much completely the way I eat, the way I entertain, the way I live my life, the time I spend with others, especially our children and our granddaughter. And we made the conscientious decision because, you know, with MBC, you never know when you’re going back into another treatment. I know that this works only for a period of time. I believe it’s going to be a long period of time, but eventually something could change. And I know that. So my husband and I, we started to, I don’t want to say be adventurous, but living our best life as best we could in 2019 that the first year that I was metastatic, I try to, to do things.
I never thought that I would do. We did a whole lot of traveling. I drove a jet ski for the first time in my life. And we went to Arcadia national park and I climbed on rocks and just things that I never would’ve thought my best friend and I I’m originally from Chicago. We had always talked about staying downtown, just the two of us last August. Me and my best friend did that. You know, we’re doing all that last year. We got to see my husband, my son perform. And we got to be there when my granddaughter met Santa Claus. I mean, joy, joy, joy all around. And that’s just what we’re trying to do. But I also find a sense of purpose with this because I have wrote written something about my journey and I shared it with family and friends. And like I said, I’m mentoring people and I’m trying to find ways that I can help other women.
And then with this diagnosis earlier in 2020, I started speaking in front of support groups, which I found really, really joyful, really, really good, because this is what I think God put me through. This is to help other people with it and then COVID hits. And so cancer has given me an interesting take on COVID. And I’ll give you an example because there’s a lot of people making a lot of hard decisions right now about, do I see him for Christmas? Do I not? You know, or can I see someone? Is it safe? And yes, I’m high risk. I’m immune compromised. And everybody’s like, is it hard for you to be staying home? Well, I’ve been doing this for almost five years with the exception of 2019. And even though we won’t see our children or our granddaughter for the holiday, I know because of cancer, how great those first hugs are going to be. My son gives the best hug. My daughter, I reach up and touch her curly hair. And my granddaughter, when she yells GG, it is up huddle. And I know that’s coming. I absolutely. And that’s been a lesson I’ve been able to learn from metastatic breast cancers, those mom moments, even though I’m not getting Christmas under the tree with them, or just, just perfect joy.
I love that. I love that. Well, I mean, Janet, I love your attitude. Love your perspective and all the things you’ve shared have been just so helpful. Is there any advice that you want to give to our listeners as we wrap up here?
I think that the advice that I would give is seek second and third opinions. If you’re not satisfied, if you have the doubt, get that second opinion. I still adore my very first oncologist, first of all, because she saved my life and it was hard leaving her, but to just get someone else’s perspective and someone else to hear it, you know, because when you go to Duke, they put you in front of a tumor board. Well, most places do that and they all talk about it. So I get all those brilliant minds talking about my treatment and just get those opinions it’s easy to do. And you will not offend a doctor if you say I want that. I highly highly recommend that
Janet. I appreciate it. And thank you for joining me on the show today. It’s really been a pleasure to speak with you and to hear your attitude and your heart.
Well, I am so glad that I got to do this with you. Thank you so much, Adam, for having me.
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