It’s estimated that at least 154,000 people in the U.S. have Stage IV, or metastatic, breast cancer. Although metastatic breast cancer currently cannot be cured, it can still be treated, with most therapies focusing on living a longer, healthier life with breast cancer.
In this episode, Jamil Rivers shares her story of living with metastatic breast cancer. She is a Philadelphia mom of three and an advocate using her voice and experiences to help advance legislative policy, medical research and customize support to better meet the needs of individuals impacted by breast cancer, particularly metastatic and African-American patients.
[00:00] Thank you to Sideways8 for sponsoring this podcast.
Adam: [00:09] 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, it’s estimated that at least one hundred fifty-four thousand people in the US have stage four or metastatic breast cancer. Although metastatic breast cancer currently cannot be cured, it is still treated with most therapies focusing on living a longer, healthier life with breast cancer.
[00:36] Today, I have the pleasure of talking with Jamil Rivers who was diagnosed with metastatic breast cancer at age thirty-nine. She became an advocate to use her voice and experience to help advance legislative policy, medical research, and customized support to better meet the needs of individuals impacted by breast cancer, particularly metastatic and African American patients. She also launched the Chrysalis Initiative which provides mentoring to women with breast cancer and engages in outreach and education for African American women to assess their breast cancer risk. Jamil, welcome to the show.
Jamil: [01:11] Thank you for having me.
Adam: [01:12] It’s great to have you here. Can you just tell us a little bit more about your story?
Jamil: [01:16] My name is Jamil. I was diagnosed with metastatic breast cancer last year at the age of thirty-nine before my fortieth birthday. There was a total shock because I had no symptoms or anything like that. It was metastatic from the beginning. In the winter prior to, I had a cold that just didn’t go away. Everyone else in the house had gotten their colds and coughs and mine just kept lingering. So, I went to my primary doctor, received an antibiotic, and by that point, it just had already spread to my bones, liver, chest wall, abdomen, spleen, I think, bones, lungs. Pretty much everywhere, all over the place. Because of that, I had to start chemotherapy right away. I did a year of chemotherapy. My husband is already a cancer survivor. I just thought, “We have three kids. What are we going to do?” So I just continued to work and just wanted to see what would happen. My tumors have shrunk to microscopic size. I’m still working full-time and my husband’s doing well. Now I’ve switched over to endocrine therapy which is pill form.
Adam: [02:31] Okay. Just to recap, you said you got diagnosed, your husband was already a cancer survivor and I believe I read an article about you and I think I remember reading in the article that you were sort of alternating, almost, treatments right? Where he was feeling bad and then you would support everyone and then you were feeling bad and then he would support everyone. Is that sort of how it worked out?
Jamil: [02:52] Well, actually, he has another condition prior to the cancer. He was already disabled due to liver disease. We’ve been together for fifteen years but that came on four years into our relationship where in 2009, he had to get a liver transplant. From that point, he’s been disabled. 2012, he was diagnosed with colon cancer and he was treated for that. It was stage one colon cancer. He had a colectomy and that was that. He had pretty much six years of clear scans and just dealing with his primary condition, which was liver disease called primary sclerosing cholangitis. Then in 2019, that’s when I was diagnosed with metastatic de novo breast cancer. I did my year of chemotherapy and a month after I finished chemotherapy, he was diagnosed with kidney cancer. Luckily, it wasn’t at the same time, but it was just crazy that we have all this cancer going on.
Adam: [04:00] And while working and while caring for young kids, wow.
Jamil: [04:05] So I kind of felt like, even though I was under the weather, my brain just couldn’t fathom as both being sick and having young children. But I just said, even though I’m under the weather, I still have to steer the ship so I have to keep working. I didn’t really want to expose my family to maybe any insecurity or instability and so I just made an executive decision to continue to work through chemotherapy. I think I’m a living testament of just keeping that normalcy. To me, normalcy represents wellness and so I had to research how to continue to live my same life, so to speak. I mean, some adjustments, of course, because I’m living with a major illness, but how can I be close to normal as possible and not disrupt my family’s day-to-day?
Adam: [04:55] Yeah, yeah, that’s right. It’s really inspiring that you made that choice and that you seem to be thriving at it. So, I’m very thankful for that. Let’s talk just a little bit about metastatic breast cancer. Can you tell me what does it mean? Is it a type of breast cancer? Is it a stage of breast cancer? Can you give me a little more information about that?
Jamil: [05:13] Metastatic breast cancer, it’s advanced stage four breast cancer, meaning your breast cancer has left from its original site in the body, which is typically the breast, and is now spread to a distant organ. And now those cancer cells have spread to that particular organ. So a distant space in the body.
Adam: [05:34] I see, I see. Okay. You mentioned the shock that it was to sort of get diagnosed, the choice that you made to just keep moving forward, to continue to work, to continue that normal life for you and your family. Can you talk just a little bit more about how you coped with the diagnosis? I mean, was it just the one foot in front of the other? Was there a little bit more to it?
Jamil: [05:55] I felt like I had to get as much support around me as possible and so I kind of did. I’m a research junkie already. I’m a data and evidence junkie and so I kind of just really overly prepared myself. I’m a very type A, project manager-type person. So I thought, I need to learn everything there is to know. I have to make sure that I have all the sufficient supports and really reinforce my surroundings to have that support system in order to make sure that we kind of go in and move into this, I don’t want to say battle because I kind of feel like that’s an overly-used term, but this new undertaking, so to speak.
[06:35] I knew that my whole life was going to change completely. I just reached out to all the cancer and breast cancer organizations in my immediate area and nationally just to see what support was out there because I had no clue of what I was coming up against. I had just saw the images, maybe in movies and TV and maybe what I’ve seen from just my own outside experience of what chemotherapy consists of and what does that do. Because of those assumptions, most people told me, “Oh, you’re not going to be able to work and you have to quit.” I mean, I had just started this new job so I had only been there for five months once I was diagnosed. And I’m sure they probably would have approved my leave, but at the same time, I wanted them to really see what I could do. I knew that this was a growth path for me, which could be great for my career so I didn’t want to sacrifice all that because of something that could be. I just wanted to see what would happen. I didn’t want to have to go that route to file for disability or go on public assistance or maybe have to take a leave if it wasn’t necessary. I really just wanted to see what happens and go forward. I literally just prepared that way. Just, “What am I going up against? Who is my opponent here?” I’m that type of person where if I have a challenge, I just think about, “Okay, how am I going to execute on that?” So I have to research, do my homework and prepare and so that’s what I did.
Adam: [08:02] Yeah. You mentioned your research, you mentioned reaching out to support agencies. Can you talk a little bit about what’s been the most helpful to create a community of support around you?
Jamil: [08:13] I think that the biggest thing was having that immediate support, not just with organizations such as Komen, but also other women that are either metastatic or have had some type of exposure or experience to what I’m going through so that you really don’t have too many surprises. You’re going to have surprises, but at least you’re not going in walking completely blind. I knew that, of course, going into chemotherapy, I was going to lose my hair. I’m going to lose my eyebrows, I’m going to lose my eyelashes, I’m going to be really, really tired. I could have some joint pain, my nails are going to be black. I could have some mouth changes. I was prepared and was ready to anticipate what all those things would look like and what kind of impact that would have on me and my day-to-day and how to preemptively prepare for that so that way I could still continue to take care of my kids and go to work.
Adam: [09:06] Wow. It’s really smart to know what you’re up against and be able to mentally prepare. It’s mental toughness to prepare yourself for that real, I really admire that. So what would you like others to know about metastatic breast cancer?
Jamil: [09:19] I would say that the biggest thing is that this is something that I’ll be in treatment for the rest of my life. It’s something that you have to keep moving forward with one day at a time. It never ends. You never know what you’re going to run into one day to the next. Also, there needs to be more attention and focus to it. I kind of feel like the same way that breast cancer was kind of like an isolation and taboo to talk about back in the seventies and eighties and Komen was the leader in order to kind of stop that, it has to be the same thing with metastatic breast cancer now. So stage four, it has to be in the forefront. We’re not just Debbie Downers. We want to live a long time with this disease and live our best life. Not just be technically alive, but doing all the things that we enjoy and spend time with the people we love, not be a burden on them.
[10:08] People that are metastatic are not just on hospice waiting to die or on Medicare. Some of us are young, a good proportion of us are young. There has to be more research and more funding for metastatic breast cancer because currently, right now only 5% of breast cancer research goes to metastatic breast cancer. There’s a lot of us living with this day-to-day. We’re not trying to go anywhere. So there has to be more attention and focus put on us and we’re the neediest of the bunch in comparison to the newly diagnosed as well. But, once you’re in that survivorship, your tangible support needs kind of reduce the bit. But with us, this is like an ongoing marathon. If we’re really going to save lives, we have to be hyper-focused on metastatic patients and really focusing on, “Okay, what are their needs? How are all of our initiatives or whatever we’re doing as an organization, how are we supporting them and impacting them if we’re really serious about saving lives?” Because you don’t die from breast cancer and the breast, you die once it leaves the breasts and becomes metastatic.
Adam: [11:15] That’s true. That’s true. So let’s just talk as we’re wrapping up here. What are some sources of support that people living with breast cancer should look up?
Jamil: [11:23] Susan G. Komen in is a great support resource nationally and on the local level. I think being an advocate gives me a lot of great information, but their website is a great tool. Their hotline is also a great tool. You can reach out to the Komen office in your local area where you can have whatever barrier or challenge they really can assist you with. If it’s transportation to get to treatment or maybe it could be nutritional assistance or it could be just if you’re having issues with your health care access, they can help you with giving you that reinforcement if you’re at risk of losing your health insurance or something like that. Another great thing that they’re able to provide is just access to clinical trials and being able to specifically wind down which clinical trials would be the best fit for you.
[12:17] Those are like the most immediate support resources that are available. I know that I’m on the metastatic advisory committee, so I’m really pushing for there to be more metastatic information and knowledge for it to be in the forefront, which I think Komen gets it. They’re really trying to be a leader in this space and move forward with making metastatic breast cancer disease on the forefront where folks are not isolated and in the shadows that are dealing with this, but it’s on the forefront of our minds every day, the same way that general breast cancer and early-stager breast cancer is. I think it’s just essential that we just constantly think about it all the time. And also, you know, start thinking outside the box where we’re also focusing on palliative care. So, what type of integrative therapies can we opt to incorporate in our day-to-day so that we can sustain our treatments longer? Because if you can’t stay on a treatment, they’re going to shift you to something else. So you want to stay on a treatment for as long as possible that’s working for you and be able to take the hits that come with staying on that particular treatment.
[13:26] So my treatment, for example right now, and even the chemotherapy, I had a lot of joint pain, a lot of just… You know, run the gamut. So let’s see. A lot of joint pain, headaches, things like that. I had to think— I don’t want to just constantly overdose myself with medication on top of the drugs that I’m already on to treat my breast cancer. So I had to look up integrative therapies that could support that. Just that knowledge I thought was just phenomenal in order to keep me in therapy. I mean, even the doctors that my cancer center said most people aren’t able to stay on chemotherapy for a year, but because of those integrative therapies that was really focused on staying in treatment for as long as I possibly could so that we could shrink those tumors.
Adam: [14:14] Right. Wow, that’s really inspiring and really wise. So last question. What’s a final piece of advice that you would give to someone living with metastatic breast cancer or possibly to the loved ones of that person?
Jamil: [14:28] I would say for the metastatic patient themselves, be gracious with yourself. This is a long marathon that you’re faced with, that you’re going to have to sustain your energy and your fortitude in order to deal with. Be gracious with yourself, for one. And I mean overdose from the support. Even if you don’t think you need help with something, stick it out. Let people help you, even if you don’t think that you need it. I know that we’re pretty independent and some of us are like, “Oh, I don’t need that type of help.” But I say overdose on this support so that even if you don’t need it, by the time you do need it, it’s like it’s just above and beyond. So take all the support that’s possible because there are a ton of resources available to you, in particular with Komen and learn about your specific subtype of breast cancer and what the innovations in technology that’s out there right now. Also, be active and know about policy in your particular state and county and on the federal level. Pre-existing conditions, cancer caps, all those protections within Affordable Care Act are on the brink now of being eliminated. Of course that can be very detrimental to our lives and our quality of life so we have to be very vocal in saying, “We’re not going to stand for that.” We pay our taxes, we pay our premiums. Our societal contract is that we need to have healthcare and not just healthcare who can afford it, but healthcare that’s quality, that’s going to sustain our lives for the long haul.
[15:57] So definitely be involved, know about your subtype of breast cancer, take in as much support as possible. Also, there is no dumb question. Be just mindful about what type of treatments are out there. Be open to also be involved with clinical trials because clinical trials will definitely scrutinize you and test you out the wazoo to know if there is anything that they need to actually deal with. And when you’re metastatic, screening and testing is an annoyance, but it also could be that early detector of righting the ship, say, if something goes awry. I think those are the biggest things as far as being metastatic.
[16:39] If you’re a caregiver or a family member, just be there, be present, be there to just accept the venting sometimes and the meltdowns. Be there just to help out with a task or run an errand or something like that. Give them a neck rub or a shoulder rub or something like that. There’s so many different ways that you can kind of be present, but I think if you just connect with that person and specifically think about what their needs are, just be there and be supportive.
Adam: [17:05] Right. Wow, that’s great. That’s great. Well Jamil, thank you so much for joining me on the show. Your story is really inspiring and I really appreciate the wisdom that you shared with us here. And for our listeners, to learn more about patient services, financial aid, or other services supported by Susan G. Komen within your community, visit komen.org or connect with your local Susan G. Komen affiliate. Thanks for listening to Real Pink, a weekly podcast by Susan G. Komen. For more episodes, realpink.com.org. For more of 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 at @ajwalker or my blog, adamjwalker.com.
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