[00:00:00] Adam Walker: 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.
Self-advocacy is an important and ongoing part of a breast cancer journey. It can begin as soon as having an inkling that something is wrong and should continue through follow-up care and treatment. It can be as simple as asking your healthcare team more questions and letting them know how you’re feeling or finding support by connecting with other people, going through a similar experience as you.
No one should face breast cancer alone. Knowing what to expect can help and getting support is important for your wellbeing Here today, to tell her story and the importance of trusting her voice throughout her cancer experience is Melissa Oakes. Melissa, welcome to the show.
[00:00:57] Melissa Oakes: Hi. Thank you so much for having me.
[00:00:59] Adam Walker: Well, it’s so good to have you. I know you’ve got a bit of a unique story, so let’s start with your story. Tell us about your breast cancer diagnosis and walk our listeners through what your diagnosis was, the timing of it, and what was going on in your life at the time.
[00:01:13] Melissa Oakes: Sure. So think back to March, 2020 and all the uncertainty that was happening with everything shutting down.
I’m in the San Francisco Bay area. We shut down here I believe it was March 16th. I was unemployed. I had just left a job. The job market was hopping, so I was excited to, to find something new. And the morning of March 25th, I woke up, put on a bra and found a lump. And I was in complete denial. No way could that, could anything be happening to me when the world was shutting down.
I didn’t sleep that night. I beat myself up, and so the next day I started making phone calls. My doctor had just retired the end of February. I did not have a primary care doctor. So I didn’t know what to do. I started going through my health insurance provider’s list of doctors, and no one would talk to me or see me becausethey were trying to figure out what to do. I don’t blame them, but no one knew what to do. We were in a, you know, a sudden global crisis. So I just kept calling and it took me over three hours before I finally found someone who would talked to me. And I had a conversation with the doctor. I actually booked an appointment and she called me. The doctor herself called me and said, “Don’t you don’t need to come in. You can if you want to, but I think based on what I know, we can have a conversation and I can probably just order you a scan if you’re comfortable with that.” So she did that and that was on, I think a Wednesday or a Thursday, and I had the scan booked for the following Monday. They did a mammogram and then an ultrasound and basically, I was there for several hours and they told me what they saw and I had masses in both breasts and I was handed the cancer binder and told I was going to need surgery and chemo and they were going to rush it.
So af I had came back the next day for a biopsy. And you know, the next morning and they started immediately getting me in touch. There’s a whole process of getting in touch with an oncology team, having an MRI and there’s all these things that need to happen. And although the biopsy was going to need about a week to come back, they were starting to schedule everything because they were confident in what they saw.
And I had no history in my family history of breast cancer. I ended up doing genetic testing. I did not have either BRCA gene, it was completely environmental. And when I met my oncologist a few weeks later, I was shocked to find out that it was three biologically different types of breast cancer.
[00:03:38] Adam Walker: Wow. So, all right.
So for, let me just pause for a second there and back up and say, and let me make sure I heard you, you called for three hours just to get a conversation with a doctor?
[00:03:51] Melissa Oakes: Yeah.
[00:03:51] Adam Walker: Which is like, I really admire that tenacity, becauseI think it would’ve been really easy to be like, okay it’s probably nothing, let’s be done with it. But that tenacity is just really amazing. And it sounds like, you know, from the time you got that first call, you continued to advocate for yourself. So I wonder if you could talk just a little bit more about that. Like, what gave you that courage? What gave you that drive? What made you think it was so important to advocate for yourself in that way?
[00:04:19] Melissa Oakes: First of all, thank you. I had another health issue a few years ago, not at all related to cancer, where there was something readily wrong and the surgeon who had treated me was sending me to another doctor to be seen, and I was dismissed as, no, you just need to heal from your surgery there’s nothing else wrong that, that doctor was completely wrong and I ended up hospitalized for a week a couple weeks later becauseI had a massive infection. So it really; I didn’t understand in the moment when I was making the phone calls for the lump that I found in my breast, what was driving me, that as I’ve reflected over the years, I understand absolutely that I needed to be heard.
Something was wrong and something was wrong with my body, and I needed help and the doctor’s offices that I was calling were all telling me to call back in the summer that they were trying to figure out Covid protocol. And I get it, you know, I was trying to think of a backup plan. Do I go to an ER? I mean, I was seriously considering that because I didn’t know what else to do. Something was wrong and I needed help and I wasn’t going to be pushed around.
[00:05:22] Adam Walker: Yeah. I mean, when you know in your bones, you know, you know, deep down there’s something wrong here, I’ve got to get an answer. I mean, it sounded like that just really drove you through the whole process. Yeah. I’m so glad that it did. So, all right. So, you got the appointment, you got the test done. Did treatment start right away and what did that look like?
[00:05:43] Melissa Oakes: They did. So again, I found the lump on March 25th. The scan was done on the 31st. The biopsy was done on April Fool’s Day, and I just told everyone, all the nurses at that point, let’s go like, something’s wrong. Let’s just get this over with. I want to hurry up. Like I just thought, oh I’ll have you know, a double mastectomy, no problem. And then I’ll be able to go back and look for a job like that was literally, and I was like, oh, by the way, I’m free next week. I mean, that literally was my mentality. Didn’t quite work out exactly that way.
[00:06:14] Adam Walker: Yeah
[00:06:14] Melissa Oakes: But, it’s ok. But they heard me and they heard, let’s go. I don’t want to wait. So I literally started chemo on April 17th. I mean, it was less than a month after finding the lump. It was that fast.
[00:06:27] Adam Walker: That is, wildly fast. Like now to start that fast, I mean, did you have to really push to start that fast? Is that-
[00:06:35] Melissa Oakes: No, I think there were a couple things that actually were in my favor. Number one, Covid, like everything was shutting down. People were not going to appointments, so they had the availability and-
[00:06:45] Adam Walker: Oh, okay.
[00:06:45] Melissa Oakes: That my diagnosis was so unique. I think they needed to really, you know, three biologically different types of cancer that put me in the less than 3% case at that point. So they just, you know, and they were all different. They were at different stages a little bit and certainly growing differently. So I think they wanted to hurry up and treat me and I was available, right, because I was unemployed. So all those things worked in my factor. They told me at the beginning that when it came time for me to have surgery that my case was so severe that they were not going to pause and wait because they just didn’t know what was going to happen with Covid. So I, I wasn’t worried about that. I knew that my case would be pushed through.
[00:07:24] Adam Walker: So let’s talk about the Covid timing. I know it worked in your favor in some ways. Were you able to have anyone help you through this, or did you have to, were you just totally on your own for navigating all of it?
[00:07:34] Melissa Oakes: So I live alone and the family I have is my mom who’s older and you know, she has underlying health conditions. And she lives about an hour away. I have a lot of friends that all showed up for me. And I just, I managed through it with their help, but I was alone. I did not, I made a commitment to myself that I was going to see through all the treatment and get rid of cancer, and if Covid got me during it, then that was going to be okay.
I had to make peace with that, but I didn’t want to get anyone else sick. I mean, remember this was before vaccines when we were masking and it was still, we weren’t even fully masking yet. Then, you know, at the, in the early days, I started masking immediately because I just didn’t know and I happened to have a mask. But you know, then masks became virtually unavailable. I mean, it was just, there was just a lot of moving parts to this and a lot of protocol. Even when I was getting my blood work done, they didn’t have policies, procedures in place for how to treat people who were immune compromised within their offices. So I, I actually had to get in touch with them and tell them they made a big blunder with me. So it was just these types of things were just happening because again, it was just such a unique time. But I did take care of myself by myself. I’d say probably 85%. And then I relied on friends to pick up meds when I didn’t. When I didn’t have the energy to go do it.
[00:08:53] Adam Walker: So I just want to make sure I heard you correctly. Did you say you live alone, right? Is that what you said? So-
[00:08:58] Melissa Oakes: Yeah.
[00:08:59] Adam Walker: Alright, so I just, I want to put myself in your shoes for a moment. You live alone. The world has just come to a grinding halt. What about a week, 10 days or so before you find a lump in your breast, you find the lump in less than a month, you’re in radiation.
[00:09:18] Melissa Oakes: Chemo.
[00:09:19] Adam Walker: Sorry. Yes, chemo. Less than a month you’re in chemo and you can’t have, you can’t have support. So again, you’re on your own. I mean, that’s got to be incredibly difficult.
Somewhat, maybe, somewhat dark, very overwhelming. Mean, what? Can you talk about that? Talk about was it overwhelming and how did you get through that?
[00:09:40] Melissa Oakes: It was extremely dark. I mean, I literally was shaking half the time, I had no appetite, I was rapidly losing weight because I just, I mean, literally life had changed on a dime for everyone around me and then my own story, right?
So all I could do was just literally rely on my friends. I had a lot of phone conversations. We watched movies together over, Netflix there was, you know, ways to share them. I just did what I could and then I was outside with friends when I could be. I, my doctors made it clear I, I really shouldn’t be inside with anyone, which made it super hard.
I couldn’t hug my mom which was just heartbreaking because I’m her only child. But I did what I could. I just relied on a lot of people who showed up. And then, you know, I didn’t really have anyone close to me at the time who had been through specifically breast cancer or really cancer. I’ve known people, but no one at that point in my life that I was close with. And I started asking for peer support. I started asking for support. I did have a patient navigator who was wonderful. She is absolutely just the absolute brightest light in all of this, and I still remain in touch with her now. And she got me in touch with a woman who was asking how she could help, someone going through it. And that woman is now one of my absolute closest friends and I call her my angel because she showed up exactly when she did, I don’t know what I would’ve done. I was such, and it’s such a dark place and she knew she had the same medical team. She knew all the ins and outs, she knew all the terminology because cancer has its own language and she knew all the ins and outs. And ironically, she had gone through, you know, kind of a similar diagnosis and similar procedures. And it just was so comforting that there was light at the end of the tunnel that I would get through it and that, you know, she was roughly a year and a half, two years out, and she told me she didn’t even really think about it every day.
And I was like, wow, that can happen. Like, who knew? So she was a turning point for me.
[00:11:38] Adam Walker: Wow. That’s amazing. And so, so you mentioned your patient navigator was really helpful. Yes. And you have a great relationship with them. I wonder if you could talk just about your healthcare team in general. What was that relationship like for you?
[00:11:50] Melissa Oakes: It was, again, scary going into it. I didn’t know who to believe. I didn’t know what to do. I didn’t, you know, some people seek out second opinions. I didn’t want to because I just, I knew it was so severe. I’m so fortunate and in a bad way that I live in an area where breast cancer is just, there’s a high percentage in the county where I live, and so there’s a lot of Medical support and very well educated doctors who live here who understand cancer.
I’m also close to UCSF and where I was treated is an affiliate of them, and I love them. They’re so progressive. So they were reviewing my case. I opened up to my medical team. I cried like buckets of tears in front of them. They knew exactly like my level of anxiety, which was off the charts high, they understood how scared I was because I was able to establish that level of trust with them and I asked a lot of questions and I stayed off of Google as much as I could. I’m still on it, but you know, I, but I, you’re laughing because you know,
[00:12:55] Adam Walker: Yeah. Dr. Google’s real dangerous. That’s right. Yeah. Yeah.
[00:12:58] Melissa Oakes: But I literally just I leaned on them as much as I could and trusted. And I asked all kinds of questions and they were there for me in ways that I couldn’t imagine a medical team could be and that was true for every doctor, every nurse. Everyone on the team, including my, my navigator.
[00:13:14] Adam Walker: Wow. That’s powerful. That’s amazing. I’m glad that you had such a wonderful experience with that. So, I’m curious what are your thoughts on screenings and preventative medicine, and have they changed since you’ve gone through this experience?
[00:13:29] Melissa Oakes: I am really glad to see that the recommendation is now, you know, 40 for women with breast cancer screenings. I think it actually needs to be earlier. I think, you I mean, people in their twenties or even younger have cancer, have breast cancer, specifically with no prior history or no indication of it.
So screenings are super important. They need to be more accessible. They need to be, these conversations just need to start happening more frequently, both at the healthcare level in the provider level, and then just, you know, in general. People don’t like to talk about cancer and it’s so common and such, you know, I mean, you know, the stats one and two women will have it. One and three men will have some form of cancer.
[00:14:12] Adam Walker: Yeah.
[00:14:12] Melissa Oakes: So that means we know people who have it right now who haven’t been diagnosed. We know that and that’s a very scary thought, but there is treatment with and a high likelihood of positive outcome when there is early diagnosis, and that’s the key to this.
[00:14:29] Adam Walker: Yeah. Screening is so important. We talk about it all the time on the show. It’s so important. If it’s recommended for you, go get screened as soon as you possibly can if you have not already. So. Melissa, your story is inspiring. What final piece of advice would you have for our listeners, maybe for someone who’s newly diagnosed, what do you wish you had known from the beginning of this process?
[00:14:52] Melissa Oakes: Ask questions align with the team and be prepared for bumps to happen in the journey. I was not anticipating that radiation would be in, in part of my treatment, and it was. It was fine you know, that was, it just extended everything and it gave a heightened sense of worry. But just be prepared for bumps and you have to rely on your medical team.
And if you don’t trust him, find a medical team you do trust. You know, I was seen as a person and treated with dignity throughout everything. I still am, I still see my oncologist twice a year. If I have questions, she’s there. And you know, I, that, that’s really got to be the key is you have to trust the people that are treating you and surround yourself with people who can provide support and make sure they have support too.
[00:15:40] Adam Walker: And if I can add to that, one thing I’ve learned from your story is if you know something’s wrong be tenacious to get the help that you need. Do the three hours of calling if that’s what you need to do. As brutal as that had to have been. The outcome was so important for you, right?
[00:15:57] Melissa Oakes: Yeah, and I didn’t even tell anyone and I told a couple friends over the weekend what was going on. I did not tell my mom. I’ve completely blindsided her afterwards. But I didn’t want anyone else to worry because I just didn’t know. And I had a feeling it was going to be something that needed to be monitored. I had no idea what was in front of me.
You know, it was nine months of treatment and-
[00:16:17] Adam Walker: Yeah.
[00:16:17] Melissa Oakes: You know, and it was everything. It was losing my hair and having to use dog clippers to shave my head because all the salons were shut down and Amazon was sold out of clippers. And you know, it’s just little thing, you know, I had to get a wig. How do I try on a wig? How do I decide what wig to get? How do I know, how do I, you know, all these things were figured out. In a way it was almost a blessing because there was a lot of busy work in trying to figure out all these things. So I dove into that instead of, you know, worrying as much about my health. I mean, I was worrying about it, but, you know, I had all these little side projects to keep me busy too.
[00:16:49] Adam Walker: Well, I’m glad that you are tenacious. I’m glad that you got the help that you needed and thank you for coming on the show to share that story, to inspire us in so many ways and just appreciate your time today.
[00:17:00] Melissa Oakes: Yes. Thank you so much for having me.
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.