[00:00:00] Adam Walker: This program is supported by Amgen. Amgen strives to serve patients by transforming the promise of science and biotechnology into therapies for patients with serious illnesses. Learn more at Amgen.com.
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.
When you receive a breast cancer diagnosis, your life can literally change in an instant. It is important to know that you are not alone.
The support of friends and family is crucial, but a Patient Navigator can also be an invaluable part of your support. Patient Navigators are trained to help to guide you through the healthcare system, to work with you to find resources and support your needs, and to help keep you on course with your treatment plan.
They are there to check on you, to lend support, and to let you know that you are not alone. Today’s guest was laid off from her job. Within a week of time, she was then diagnosed with breast cancer. Here today to tell her story and why it was so crucial to have a Patient Navigator to help maneuver through the mini life changes that she was experiencing is Melissa Jones. Melissa, welcome to the show.
[00:01:22] Melissa Jones: Hi Adam. Thank you.
[00:01:23] Adam Walker: Well, I’m so glad to have you here. And I’m very interested to learn about your experiences with Patient Navigator, because I do believe it’s such an important component in the cancer journey. So let’s start with your cancer story because I know there were some life circumstances surrounding the timing of your diagnosis. So why don’t you tell us about that and what happened from finding the lump through your diagnosis?
[00:01:46] Melissa Jones: Okay. All right. So this was in 2017. In March of that year. I had my regular mammogram. Everything was fine. No issues. Life was grand. My one daughter was a senior in high school and my other daughter was gonna be starting college in the fall in New Orleans.
So, you know, things were great. August 25th, my mom’s birthday. I found a lump myself in my left breast and it felt like a pea. And I was like, oh my God. You know I can’t say anything about this now, you know, this is my mom’s birthday, you know, we gonna be celebrating to her, celebrating her today.
So, you know, I’ll wait a day or so. So waited, you know, called the doctor and, you know, just kind of waited for a little bit.
[00:02:36] Adam Walker: Right.
[00:02:36] Melissa Jones: And then that Thursday, I can’t remember the date, I think maybe September 4th or so. My job for 12 years, got a little meeting notice to come in, to meet with HR.
Like, oh, well that can’t be good. So I got laid off. Part of a mass layoff after 12 years. So I was like, oh my God, you know, how in the world am I going to deal with this? You know, have a daughter starting college, another daughter in private school, you know, what’s gonna happen here. So Went to the doctor, had the mammogram, had the biopsy and then Tuesday of that next week got that phone call, Melissa, you have breast cancer.
[00:03:27] Adam Walker: Wow. That is so tough. I mean, just back to back like that, and especially in that particular stage of life, that’s just got to be so, so difficult. So do you have any history of breast cancer in your family that would’ve kind of put, made you aware of this at all?
[00:03:43] Melissa Jones: Well, that’s the ironic thing. So my mom is a breast cancer survivor and her sister, my aunt is a breast cancer survivor. However, my mom had the genetic testing and I had the genetic testing and neither one of us had the gene.
Yes.
[00:03:59] Adam Walker: Wow. So, so even more unexpected, I would imagine than because of that. Right? Exactly. You feel like. You’ve dodged it and yet you have not. Okay. So, so then what happened next? What did you do next? Did you go straight into treatment?
[00:04:13] Melissa Jones: So of course, like I said, I had the biopsy, got the diagnosis and then I had the two procedures to have the lump removed.
And then started my treatment plan. I had six treatments for chemotherapy. And then I had radiation treatment after that followed by a full year of infusions.
Yes.
[00:04:39] Adam Walker: Okay. And so of course, as given away by our intro, we are, we’re gonna talk about Patient Navigators. And so I understand that you used a Patient Navigator through your journey. And I’d love to be able for you to share more about that with our listeners. How did you find a Patient Navigator? And what types of things were they able to assist you with along the way?
[00:04:59] Melissa Jones: Okay. So of course, you know, a lot of things change over the years, as far as you know, breast cancer technologies and things like that. Didn’t really have any resources at the time. Had a good friend whose mom she was a, she used to work closely with breast cancer patients and she was telling me about agencies here in St. Louis that actually help provide resources. So I was able to get connected with Gateway to Hope, which is funded by Susan G. Koman. That’s why it’s so important to you know, make contributions and support agencies like Susan G. Koman. So through Gateway to Hope, they connected me with a Patient Navigator, which was Christine.
And I mean, she was just absolutely fabulous. So Christine would call and check on me regularly. I told her my situation. So they had a couple things that I could apply for as far as financial assistance. So since I didn’t have a job anymore, that meant I had expensive Cobra. So through their scholarship programs, I was able to get assistance with paying for my health insurance and I was also able to get assistance with paying my household bills, like my mortgage.
[00:06:20] Adam Walker: Wow and that’s pretty amazing. And so you said something earlier that I thought was interesting. You said, I think you mentioned that the landscape is always changing so quickly and like that’s the value of a Patient Navigator, right?
Is that, that it’s their whole role to understand and know what’s happening within the medical landscape and to walk you through it as things are changing in real time to get you the best care and the best help that you can receive versus if you just went out and did your own research or even talked to somebody that, you know, went through this two years ago, but what was true two years ago may not be true or completely accurate today. Right? And so that’s the, I think that’s part of the huge value of a Patient Navigator. Was that, is that kinda what you were saying?
[00:07:00] Melissa Jones: Yes. Most definitely. Most definitely.
[00:07:03] Adam Walker: OK.
[00:07:04] Melissa Jones: Resources change. Technology changes. Yes.
[00:07:09] Adam Walker: So, alright. So then considering the timing of just all, I mean, the profoundly bad timing of all of this, right after your layoff. What was having the support of a Patient Navigator like? And why was that so important to you during your journey?
[00:07:25] Melissa Jones: You know, it’s not true, but you still feel like, oh my God, I am the only person that this is happening to. You know, you’re in your own little world at that point. And you know, so by having Christine there, it helped me to know that no, you’re not alone.
Unfortunately, you know, many women are diagnosed with breast cancer on a daily basis, you know, and there is an abundance of support out there. So that was always nice to have her to, you know, receive her phone calls for support to check in with me to kind of navigate through the process. They were also involved with like keeping up to date with my, how my treatments were going, the doctors I was meeting with.
They were also able to help with like they will give you gas cards for your caregiver to transport you to and from treatments. Also as far as letting me know I could go to the American Cancer Society and they could help, like with wigs. I mean, it just an abundance of resources were provided through the patient navigator.
[00:08:34] Adam Walker: Well, and so I would imagine because you have that instant access to so many resources. That probably frees up some of your friends and family to support you in other more focused and more personal ways. Right. So was that your experience where they were able to help you in ways where rather than having to spend hours and hours Googling all over creation, trying to find answers for you? Right?
[00:08:56] Melissa Jones: Yes. Most definitely. Right. So my family was able to do the love and supportive piece and the Patient Navigator was able to do more of the, you know, medical, financial pieces for me. Definitely.
[00:09:10] Adam Walker: I mean that’s gotta be just such a gift for you to be able to focus on what’s important to you, which is your health. And for your loved ones to be able to focus on supporting you and then let the Patient Navigator focus on so many of those other details that are just constantly changing.
So, so then I’m curious you mentioned your kids. How do you talk to your daughters about their health and the importance of self care and being aware of what’s going on in their own bodies?
[00:09:37] Melissa Jones: Well, like, you know, like we’ve already discussed, I have two daughters, so of course, you know, that becomes a huge concern for me, you know, and are we gonna have worry about them facing this diagnosis as well?
So even for myself, since my mom had breast cancer, I did start getting mammograms early at 35. So, you know, my girls will definitely be doing that. And one of the biggest takeaways is the importance of self examination. Because, like I said, I just had a mammogram in March and everything was fine and I found it myself.
So it’s very important, you know, for my girls and everyone else out there to make sure that they’re doing the self examinations. And, you know, if you, if something doesn’t feel right, you know, you definitely need to take the time to talk to your doctor and get it checked.
[00:10:25] Adam Walker: That’s right. That’s right. Well, Melissa last question. Do you have any advice for our listeners of something that you’ve learned along the way or something that’s really worked for you?
[00:10:39] Melissa Jones: Having a positive attitude was just incredible. So faith, family, and having a positive attitude. You know, I had to be, I had to be, you know, still be supportive towards my kids. You know, I couldn’t afford for them to see me down and depressed. And, you know, they have said to me, you know, mom’s just amazing your strength going through that whole journey.
So I think that was really important. If possible, if you can have that one supportive person to go with you to your doctor’s appointments and treatments and take a notebook. Like my mom was there or my daughter was there because everything is just like wawawa, when you’re sitting there listening. So if you have someone that can take notes and, you know, write down your vitals and how you’re feeling that day and next steps, that is huge.
[00:11:31] Adam Walker: Yeah. It’s so important. So, so I know I said that last, that was the last question. But I do have one small follow up question about the positive attitude. I’m just curious. So, I agree having a positive attitude really is critical in situations like that. And I’m curious, was there anything that you would do to shift your perspective back to a positive attitude?
So if you were maybe in a bad place mentally to sort of psych yourself up or put a smile on your face do you have any thoughts about that? Any, anything that works for you?
[00:11:59] Melissa Jones: When things like that happen to you, you know, of course you wanna say why me? But you know, actually you have to have that test so that you can be a testimony to others. So I just had to really remember that. And I ha had such a huge support system. Like I actually had a pink party afterwards to celebrate and I had all my friends and coworkers and family members there and we made a donation to Gateway to Hope after that.
Another thing I did is I asked all my friends and family to wear pink and send me a picture the day of my first treatment. So while I’m sitting there going through treatment, I’m getting emails and text messages of all these pictures. So I told everyone, you know, it’s just like you guys were there with me. And I, I mean, I was just so moved by that and I actually made a photo book with all of those pictures in it.
[00:12:54] Adam Walker: I love that. That’s such amazing idea because like on that day, which I would imagine has got to be just so profoundly difficult for that first treatment for you to just constantly be bombarded by pictures of your loved ones wearing pink.
It’s just got to be so amazing. Wow. That’s such a great idea. Thank you for sharing that. I love that. Oh man.
[00:13:16] Melissa Jones: Definitely.
[00:13:17] Adam Walker: Oh, wow. Okay. That was just fantastic. Well, Melissa, this. Fantastic. Thank you for coming on the show and just sharing your story with us and especially helping us to focus on the importance of Patient Navigators and how they helped you through your own your own journey. So thank you for joining us on the show today.
[00:13:36] Melissa Jones: Thank you for having me.
[00:13:38] Adam Walker: This program is supported by Amgen. Amgen strives to serve patients by transforming the promise of science and biotechnology into therapies for patients with serious illnesses, learn more at Amgen.com.
Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit RealPink.com. For more on breast cancer, visit Komen.org. Make sure to check out at Susan G Komen on social media. I’m your host, Adam, you can find me on Twitter @AJWalker or on my blog, AdamJWalker.com.