In this episode special guest Monique Robinson shares real life stories and experiences as a patient and lessons learned.
Monique is an Afro-Latinx attorney, avid traveler and two-time breast cancer survivor. She lives with her husband and two dogs in Southern California. She hopes to be a resource to other young women diagnosed with breast cancer.
Adam: [00:04] 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. As you know we often have the privilege of speaking with breast cancer survivors on Real Pink so I’ve heard about the fear, confusion, anxiety that breast cancer diagnosis can bring. But our Real Pink audience has also told us that hearing real-life stories from other survivors and sharing in their experience can be healing, uplifting, and empowering.
[00:38] So to share her story of her journey through breast cancer with me today is Monique Robinson. Monique is an Afro, Latin, ex-attorney, avid traveler and two-time breast cancer survivor. That’s two-time breast cancer survivor. She lives with her husband and two dogs in southern California. She hopes to be a resource for other young women diagnosed with breast cancer. Monique, welcome to the show.
Monique: [01:02] Thanks, Adam.
Adam: [01:03] Wow, so two-time breast cancer survivor like that in and of itself you’re a superstar basically. That’s amazing.
Monique: [01:10] Thank you. Thank you, sometimes I refer to myself as a Unicorn.
Adam: [01:13] Yeah, well, I can see why. That’s really amazing. I love that and I want to hear more of your story so let’s dig in. Give us a little bit more background. Tell us a little more your story.
Monique: [01:23] Sure, so when I was twenty-four I had just started law school and I found a breast lump and I went to the student health center and they were very proactive and sent me to a radiologist and fortunately the radiologist said it looked fine, but recommended sort of annual surveillance. So for the next three years, I went to the radiologist just to monitor that lump and everything was fine. So when I graduated I moved back to southern California, had a real job, had real insurance, went to see a new radiologist who recommended a biopsy. So he did the biopsy and it came back abnormal so at this point I’m twenty-seven and they recommended an excisional biopsy, which is different where they actually remove the whole lump, not just a piece of the tissue.
Adam: [02:09] Okay.
Monique: [02:09] And so when they did the excisional biopsy, it came back abnormal, but benign. So it came back for something called a Papilloma which is not cancerous, but it’s abnormal enough that they recommended that I be monitored again annually going forward. And so every year I would go for an ultrasound and then when I turned thirty it changed to mammogram and everything just sort of went like that for another few years everything was okay. And then in 2015 when I was thirty-two I found a new lump in the same breast and I wasn’t immediately alarmed because of my history, so I figured, okay, it’s the same sort of drill, but as the process played out a little bit I started to feel a little uneasy that this time was different and it turned out to be different and so I was diagnosed with stage one intra-ductal carcinoma. And so yeah, it definitely was devastating in that moment and then when I could catch my bearings I did some research and started meeting with my doctors and I realized, oh, stage one is early.
[03:18] I caught it early. There’s great treatment options like we can knock this out and I’ll be fine, and so I opted for a single mastectomy on the left. I did a skin-sparing nipple, sparing mastectomy on the left, followed by chemo and then I also was going to take a drug called Tamoxifen for five years. Tamoxifen is a drug for women whose breast cancer has receptors for either estrogen or progesterone and so it helps to block those hormones from reaching breast cancer cells. And so I did that and in 2016 was feeling great, did re-construction, started back to work full time traveling again and then in early 2017 I found a lump in my reconstructed left breast underneath the implant. Again, I didn’t necessarily think too much of it because hello, I had reconstruction it could totally be scar tissue or something like that.
[04:18] But I also kind of had this bad feeling about it and thankfully my doctors were really great about sort of listening to my concern and not taking it for granted. So we went through the process of an ultrasound followed by a biopsy, which was difficult because there is a huge implant now and a couple of days later it did come back for breast cancer. That was shocking just because the first time I went through treatment it felt like I was super aggressive and there was just not really a high likelihood it would return because I was so early stage. The good news is my first PET scan didn’t show that the cancer had spread, but it did show something sort of suspicious in my lymph nodes that they required me to repeat the PET scan. So while I was sort of waiting to repeat the PET scan I decided I don’t want to deal with this anymore.
[05:13] So I decided to do a double mastectomy, so basically somehow they performed another mastectomy on the left side and then we did a prophylactic mastectomy on the right side, and then there was some debate as to whether or not I should get chemo because it sort of seemed like, well it was this one small little space. Do you really need it? And then my second PET scan showed a nodule in my inner mammary lymph nodes that seemed almost positively to be cancer. With that, it became clear that yes I should do chemo again and we should also do radiation, which I did and then for good measure we also did six months of oral chemo just to be certain like hopefully, we got it all this time. And so I finished my oral chemo in the spring of 2018 and then I had reconstruction and knock on wood my scans have come back clean. There have been a few scares, but nothing that has come back for malignancy so I’ve been disease-free for almost two years now.
Adam: [06:24] Wow. Wow, I mean that’s a lot of chemo and procedures in a very short amount of time. That’s amazing. So the other thing I wanted to just touch on is something that you said that other guests on the show have talked about where you felt like this was different. You could tell something was different because I think you really kind of talked about three lumps right? So the first one when you’re early twenties, the one in your thirties and then the third one, and so the first one obviously you felt sort of good about it was okay. You were monitoring it, but then the second and third one you said you felt a little different and do you want to talk just a little more about that. Like what was it about that situation that made you realize that this is different?
Monique: [07:01] Sure, so the difference between my first lump and my second lump for better or for worse had to do with the fact that it wasn’t my first rodeo. By virtue of having the first lump and having gone through multiple ultrasounds and mammograms you kind of know what’s normal and what’s par for the course.
Adam: [07:22] I see, right.
Monique: [07:23] When I got the second lump I was like, hmm, it’s in a different location, but no need to jump to conclusions. But when they started to do the ultrasound, for example, and for the first time they’re using something called Doppler, right, which is like a coloring that they do to see how the blood is flowing or they started to look to see if there was anything in my armpit, and you’re like, “Oh, that’s not what they’ve done in the past. “
Adam: [07:48] Right, okay.
Monique: [07:50] It was sort of the totality of the circumstances and I tend to be a very pragmatic person who doesn’t like to jump to conclusions and to the very scary places that exist, but there was this feeling that I couldn’t shake and I think one thing that I would mention is when I first was diagnosed, I talked to other survivors to learn their stories and one story that stuck with me was a co-worker of mine who had had a double mastectomy and she recurred locally. Knowing that that was even a random possibility made me want to be serious about like, “Hey, let’s just vet this.”
Adam: [08:36] Yeah, right. So let’s talk just for a minute about your journey so you’ve had quite a journey from early twenties until now beating breast cancer twice and so what’s the biggest challenge and I know there’s a lot, so if you can identify maybe just the biggest one or two challenges for us.
Monique: [08:54] Sure, so I think fear honestly is the most, I don’t know, paramount challenge for any woman going through breast cancer so the first time it’s fear of the unknown. I don’t have a family history of breast cancer. I didn’t have a lot of prior experience and so it’s fear of the unknown. You hear cancer and you’re like, “Oh my goodness does this mean I’m going to die?” Then you educate yourself and you’re like, “Oh, thank goodness I’m fortunate enough, it’s early stage. We can treat this, it’s going to be fine.” And so it’s what can you do about that? Well, how do you change your lifestyle and how do you make sure you’ve done the most aggressive treatment you can to help prevent recurrence, but then you recur and so then it’s fear of metastasis and so I think fear, I mean I say fear for some people it could be anxiety, but it’s sort of the same phenomenon. I think that’s probably the biggest challenge is how to confront that and manage that.
Adam: [09:57] Yeah and you mention educating yourself, right, and so let’s dig into that a little bit more too. How did you educate yourself and really empower yourself to battle this disease?
Monique: [10:08] Literally the evening I got a phone call that said I had breast cancer after I had cried a few tears. It was, okay, what can I look up now and how can I get more information and so one of the first things I did was go to reputable websites like Susan G Komen, just to sort of orient myself because doctors speak in jargon and they throw out big words and you’re like, well, what does that even mean? That was my first place, but the second place I literally ordered breast cancer books off of Amazon and I was like, I’m going to learn as much as I can so I can understand what the doctor is saying to me, but also be able to ask questions and be able to evaluate my options.
[10:57] Knowledge is power and that can help quell your fear. Like once you understand something, you can manage your anxiety, you can manage your fear because you realize, “Oh, maybe this is an eight-month battle in my life, but I may come out on the other side of this okay,” and so for me, it was really important. Once again, the initial devastation had passed to sort of become proactive and learn as much as I could and for me that was empowering.
Adam: [11:27] Yeah, I mean I really love your approach I mean it sounds like if I could sum it up, it’s educate yourself and accept the reality that you’re in And I think a lot of times in many situations, and certainly in breast cancer diagnosis, it’s accepting the reality that you’re in that allows you to say, “Okay, this is my situation, now what am I going to do about it?” Because you’re right, if you’re in denial, there’s nothing you can do until you accept that reality then can move forward and really as you said, one of the best ways to move forward is to educate yourself. That’s fantastic. I love that.
Monique: [12:01] Thank you, thank you.
Adam: [12:01] I love that. I love that. I think you’ve given great advice for someone like you said that’s recently diagnosed, so let me ask you one final question, but with a slightly different emphasis. So what advice would you give to any listeners that we have that have a loved one that’s recently diagnosed or is dealing with breast cancer? How can they be supportive? How can they be helpful?
Monique: [12:24] Sure, so I think I would take that question and I would sort of separate out someone who’s like the caregiver like the partner or the spouse versus someone who’s just like a friend or a co-worker.
Adam: [12:37] That’s fair, okay.
Monique: [12:37] And so for your caregiver like the spouse, the partner of the patient I would say to be present, that may sound obvious, but I mean that in two ways. One to be emotionally present. It can be devastating to you also to get that diagnosis for your wife or your partner and it’s not a good time to check out. You should be there in the trenches with her, so be present.
Adam: [13:07] That’s right.
Monique: [13:07] But also be physically present. Go with her to the doctor’s appointment or to her chemo appointments. Please do that. It’s supportive, but also you can take notes.
Adam: [13:17] Yeah.
Monique: [13:17] Because it’s very easy to not fully remember what was said during those meetings so be emotionally and physically present and also just sort of be patient with her. She’s going to be dealing with a lot emotionally and physically and she may not be herself. There’s a level of patience that you’re going to have to have with her as she goes through treatment and for sort of friends and family that’s more outer support group, ask her what she might want or need but if she’s not in a place of being ready to accept help or ask for help or knowing what she needs help with, think of ways to help. So if she has kids, can you babysit? If she has dogs, can you walk them? Can you bring by dinner?
Adam: [14:05] Cut the grass or…
Monique: [14:05] Can you help clean the house. Right, exactly so there’s ways like that you can definitely help. I would say don’t pity her. It’s hard, but try not to do that and I would also say it sounds kind of silly, but try not to be like a cancer expert where it’s like, “Oh, you know my co-worker had breast cancer and she worked the entire time.” That may not work for your friend or your loved one. Or, “My aunt had breast cancer and she did fine,” and that may not be that person’s reality so just sort of be careful in saying things that you might mean to be harmless, but may feel judgmental or unhelpful to the patient receiving them.
Adam: [14:48] Yeah, that’s great. Well, Monique, I can’t tell you how helpful this was for me. I learned a lot. I really admire what you’ve done and the tenacity by which you’ve done it and I just really appreciate you coming on the show. Thanks so much. Love to even have you back sometime.
Adam: [15:09] Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit realpink.komen.org and for more on breast cancer, visit komen.org. Make sure to check out @susangkomen on social media. I’m your host, Adam, you can find me on Twitter @ajwalker or on my blog, adamjwalker.com.
Intro and outro music is City Sunshine by Kevin MacLeod. The Real Pink podcast is hosted by Adam Walker, produced by Shannon Evanchec and owned by Susan G. Komen.