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Talk About Cancer
Talk About Cancer is a podcast of stories from cancer patients, survivors, caregivers, and family members. The host, Serena Hu, talks to her guests about their emotional journeys with cancer and what happens to the relationships in their lives after a cancer diagnosis. They sometimes explore how culture and faith shape each person's experience of cancer and grief. You will find diverse perspectives, honesty, and wisdom in these stories to help you deal with cancer and its aftermath. http://talkaboutcancerpodcast.com
Talk About Cancer
I didn't cause this
Nefa-Tari shared the devastating experience of being diagnosed with uterine cancer and ending her marriage soon after, and how she eventually found her way out of that incredibly tough period by advocating for her own needs and leaning on her faith.
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My reflections on the conversation:
Losing a relationship after a cancer diagnosis - whether a family member or a friend - can feel like the ultimate betrayal for cancer people. I’ve learned early on that some people just don’t know how to deal with all the emotions and responsibilities that come with a cancer diagnosis, but it still sucks when the person you thought you could count really isn’t up for the job. Like Nefa Tari and other guests on the show have mentioned, when dealing with cancer, you have to prioritize yourself, even if that means ending relationships that are so important to you. But the space that gets vacated will be filled by people who can meet you where you are.
Hey everybody, this is Serena, your host for the Talk About Cancer Podcast, where I talk to cancer patients, survivors, and caregivers about their experiences dealing with cancer. We're all given treatment plans when cancer shows up in our lives, but no one gives us plans for navigating the hard conversations we need to have and the relationship challenges that will inevitably come up. This podcast is meant to help fill that gap for those dealing with cancer. I think of it as an on-demand audio support group where listeners can hear about others' experiences managing similar problems, but most importantly, get insights about how our loved ones are feeling on this journey none of us signed up for, and better understand where they may be needing support. In today's episode, Nefatiri shared the devastating experience of being diagnosed with uterine cancer and ending her mirror soon after, and how she eventually found her way out of that incredibly tough period by advocating for her own needs and leaning on her faith. Let's dive into her story now, and I'll check back in with you at the end. Welcome to the Talk About Cancer Podcast. Let's start with a quick intro and have you tell us a little bit about yourself, who you are, where you're from, and anything else you would like to share with our listeners.
SPEAKER_01:My name is Neffiteri Moore, and I'm originally from Brooklyn, New York, but I now live in New Jersey, and I'm honored to be here to share my experience with gynecologic cancers. In fact, I'm a three-time cancer survivor. I had uterine cancer twice, and then I survived ovarian cancer. But I kind of want to take it back to my first two diagnoses of uterine cancer, even sometimes referred to as endometrial cancer. So in 2013, I was diagnosed with uterine cancer for the first time. I had been experiencing some heavy bleeding for maybe about two months. And um, at the time I had a very busy schedule. I knew if something wasn't right, but um I wound up eventually going to the um emergency room. I didn't have a very pleasant experience there. When I told the emergency room doctors what was going on with me, I was kind of dismissed. You know, I told them about the bleeding and how long it was going on for, and and it was just like, oh, maybe you're stressed, or maybe it's a change in cycle. They were basically saying that it was all in my head. I had recently gotten married, so even that was thrown at me like, oh, maybe you didn't really want to be married, and this is the body's reaction of, yeah. That's weird. Yes. Very much so. I got angry because you know, I was just being dismissed, and I I just I felt like I wasn't being treated right. And I mostly associated with it with the fact that I'm a black female, and I'm uh at the time I was a young black female. Um how old were you? 33. I'm 41 now. Yeah, um, and so they told me to go home um and just put my feet up and rest, that they would give me some ibuprofen because I also had some severe little back pain along with the heavy bleeding.
SPEAKER_00:Is that what brought you to the emergency room? Was the back pain plus the bleeding, or because you said you were bleeding for a while, right? So I'm trying to understand like what finally pushed you to go into the emergency room.
SPEAKER_01:Or pushed me to go to the emergency room with or instead I at that point was bleeding so much that I started becoming weak. You know, I never missed work, but this particular morning I felt so weak that I could barely get out of bed. And so that's what made me go to the ER. So yeah, you know, I was just told, yeah, to go home and get some rest, um, and that they would give me some ibuprofen to help with the back pain and um if I needed a doctor's note. And then I pushed back and I said to them, no, I'm not going home without further testing. I know my body. This is not just, you know, stress or all my head or or change in cycle, you know.
SPEAKER_00:How did you instinctively know to push back at that point?
SPEAKER_01:That would be a long conversation. That has a lot to do with my upbringing and also my faith and my belief.
SPEAKER_00:What do you mean by your upbringing though? If we could get a summary version.
SPEAKER_01:I come from a family of, you know, civil rights advocates. Um that makes sense. Yeah, so I come from, you know, that type of a family, and I've I come from a family of very strong-willed women, and also in my household, they pushed us with great confidence. You know, they taught us how to be confident in ourselves, how to speak up for ourselves and others, and especially when something is not right when you believe you're receiving unfair treatment. And that was the case on that day. And then also, you know, me being a nurse, I kind of know, you know, my rights as a patient as well. So essentially they did get me in to see uh a tech who um performed an ultrasound on me, a transvaginal ultrasound to be exact. And she could see that I was bleeding, aside from being able to see it physically. And then I wasn't diagnosed at that point, but they were now taking me serious that something else was going on. They uh referred me to a specialist. I explained everything that was going on with me with the bleeding and the back pain and for how long it was going on. You know, I talked about the consistency of it, the fact that I was clotting so much, and that everything about it was so unlike my regular monthly period. So what he did was he scheduled me to have a DNC. Uh, it's a scraping as well of the uterus, and so I did have the DNC perform, and it did unfortunately for me come back that I had uh uterine cancer.
SPEAKER_00:And what was going on in your mind after you received the diagnosis? Because you mentioned that you were 33, and you had mentioned that you had gotten married that year. What was going through your mind with that diagnosis?
SPEAKER_01:Yeah, it was really tough. Um, when I got the news, I was at work. I was just so shocked. It was terrifying. I immediately I thought, you know, my life would end, that I would lose my life. And so it was just completely devastated to really sum it all up.
SPEAKER_00:I I assume you had to then share with your husband what was that like for the two of you?
SPEAKER_01:Well, it didn't go well at all. Um, for some reason, I waited a couple of days before I actually told him about my diagnosis, and then when I did tell him, his response was just blank. It was just like, oh oh, I'm sorry to hear that. And then he just went on to talk about whatever he, you know, wanted to talk about. So it wasn't received well at all. Pretty much after telling him my diagnosis, not long after that was the end of our new marriage, you know.
SPEAKER_00:Oh wow. Why did you wait to tell him?
SPEAKER_01:That's a good question. I always feel like so much in control of my life and what goes on with it and the decision making. So I guess you know, if it's a part of that, me being in control and also just letting it, you know, resonate in my head. Thinking back on it, that's most likely why I decided to um wait. I didn't really even know how to say it, really, to bring it to words.
SPEAKER_00:You were processing it and also sometimes having to say it out loud to another person makes it real. So you mentioned that your marriage ended after your husband found out about your diagnosis. Was that because he just couldn't support you? Can you tell us what happened there?
SPEAKER_01:He wasn't able to support me through my diagnosis and the whole new change in life, all that was about to happen, you know, in terms of treatment and doctor's appointment, and the um possibility that I wouldn't be able to have our own biological children was a big part of why we weren't able to stay married. So it was like a constant battle. One day, you know, I just said to him we were not getting along, so I just said to him, I cannot battle with you and battle cancer at the same time. So I'm gonna make the decision on which one I'd like to continue to stay in the fight for, the one that I have control over, and we can no longer stay in this marriage, you know, and I, you know, asked him to leave. And so from that moment on, then I was able to uh drew God, I must say, to battle with having cancer.
SPEAKER_00:And looking back on that decision, would you say that was the right decision today?
SPEAKER_01:Oh, absolutely. You know, absolutely. Um it was tough in the in the beginning because I felt alone, but it wasn't in a way that I don't have anyone around me because I did. I had my family um and friends. It was just in a way that, you know, I didn't really have another person that I could relate to because I was fairly young. It was the only young person I knew, or even the only person for the matter that had, you know, uterine cancer. So I just felt alone and then having to end a relationship based on my diagnosis made me feel even more, you know, alone and down. But I decided that, you know, hey, this is my life and I want to still be here. So that's what carried me on. My faith is well.
SPEAKER_00:Yeah, making yourself the priority. And how did you find support? It's one thing to say, hey, you're too much for me right now, I gotta take care of myself. But it still is, you know, it's like the cancer is still here and you are still going through loss, even though that was your decision. So, how did you find support? How did you get through that really tough period?
SPEAKER_01:My main source of support was again my faith in God. You know, for a while it was really uh tough for me. Um, and I was just questioning God, you know, for so many days, asking like why did this happen to me? I'm a good person. I, you know, I even started like thinking back as far as I could that I do something uh to somebody that was so terrible that this was caused by me. And so I really couldn't come up with anything. So um, you know, I still continue to work after my diagnosis, but I would cry, you know, multiple times a day. Anytime I had a moment to myself, or I would make time to go somewhere to be by myself to cry. And then after work, I would, you know, hurry home just so I can be by myself to cry. So um, in just one day, I had just finished crying and I was washing my face. I happened to look up in the mirror, and it's like my eyes were all puffy, my face was all red, and I just said to myself, you know, it's like God said to me, like, wipe those tears off, you know, try your face, and you know, you're gonna be okay. And so that gave me strength. Uh and then I had the strength of my godmother, my second mother, you know, as I call her. Um, she was a big support system for me, my friends. So those were my supportive networks at the time. I searched, you know, for like support groups because I know people, you know, attend support groups through cancer, but there weren't any support groups for uh uterine um endometrial cancer. I did find uh a mixed group, meaning that there were people in that group with all different types of cancer, and there were also men in the group. Yeah, it just wasn't the right group for me. So I just leaned on my faith. The people who also attend my moss were very supportive of me as well. So that just made up my supportive network.
SPEAKER_00:Were you not able to find specific groups? Is it because uterine cancer is not as common?
SPEAKER_01:Uterine cancer is number one gynecologic cancer, and the fourth leading cancer in terms of diagnosis, it's uncommon. You don't really hear very many people talk about it. That's why, you know, most of us will say, Oh, I've never met another person with it. Oh, I didn't know enough, you know, I've never heard of it before. So, yeah, it's not talked about. In the last year, we're finding more out more information and there are more studies being done. I I work at an organization called Share, where we now have support groups who started in 2020. Yeah, there wasn't very many supportive networks around it, or very many people speaking out about their diagnosis or information about it.
SPEAKER_00:So are you saying that it actually is like the number four most diagnosed cancer? But it seems like people who are diagnosed with it are less likely to talk about it as compared to other types of cancer. Is that what you're saying?
SPEAKER_01:Yes, absolutely.
SPEAKER_00:Okay.
SPEAKER_01:And because it's so personal, I mean, cancer in general, but it deals with, you know, the below the waist organs that we don't like to uh talk about that is considered taboo. So that's why it mostly goes on a hush, you know.
SPEAKER_00:Yeah, it's a very interesting point because one thing I often talk to my guests about is kind of the cultural influences of how tabooed a topic is. But what you're raising is slightly different, that even within that big category of taboo, there's sort of like different gradients of how much more taboo uterine cancer may be in comparison to breast cancer or skin cancer. So depending on what region of the body it is associated with, it actually then brings in extra sensitivity, I guess, to even have a conversation.
SPEAKER_01:Yeah. And also, you know, the amount of funded, breast cancer, there's a lot of research and a lot of funding, money given to do those research for breast cancer. But with uterine cancer, there isn't, you know, you don't really have very much funding that's been given, you know, to do, you know, very much research on it. Again, until this year, you know, there was some interesting um research studies and you know, new ways to treat uh uterine cancer that came out of this year's SGL conference. Now there is quite a bit of awareness surrounding uterine cancer. So hopefully that aspect will change in terms of funding.
SPEAKER_00:And going back to the topic of taboo, so did you talk about this with I mean, you said obviously you had good support from your friends and family, but did you decide to be relatively public and open about what you were going through at the time?
SPEAKER_01:Not the first time I was diagnosed. No, I didn't tell very many people. No, I I didn't say very much about it. I was very quiet about it. Well, uh, I was quiet about because I didn't know, you know, it was so much uncertainty uh surrounding my diagnosis and the devastation as I talked about earlier, and then just not being given very much information about it, I didn't say very much about it. I uh in the way which I kind of hinted at earlier, you know, I felt like I did something to cause this to happen to me. I felt like it was my fault. So I felt ashamed in the way to have this diagnosis. So yeah, I didn't say very much about it. But I want to say by the time I was diagnosed the second time, because let me go back a little bit, I was put on medication, a hormonal medication to treat um the uterine cancer the first time I was diagnosed. And, you know, the medication, it worked for about nine months. But during that, the course of that nine months, every three months, I would have to go in to visit my oncologist to have an an office biopsy to see, you know, if the cancer spread, just you know, as a checkup. And so everything was fine for for nine months after being off of the hormonal medication. But while I was on hormonal medication, I had a huge rash of all over my face as a side effect from this medication. And so I felt, you know, insecure, whereas before I was never insecure about anything. So for nine months after being off the medication, I came out with clear biopsies. And then it was during my third biopsy that the results came back that I had um a recurrence. By the time I was diagnosed the second time, I started, you know, speaking out more about it to uh friends and family members, anyone that I could think of. And because uh uterine cancer is so um prevalent, you know, the percentage is so high amongst black women, and most often when we are diagnosed with aggressive or late stage, it's like 80% of the time, and then versus you know, our white counterparts where it's more at 60%.
SPEAKER_00:And so I started speaking out more about it to my community about it. It makes sense. So the second time around, you felt like there was more uh almost like a sense of duty understanding the statistics for your community to really raise that awareness to say, hey, look, this can happen to you. Don't wait, right? Check things out. Um and you mentioned about that difference in statistics. Is there explanation? I mean, I think it's hard to prove those things, but what's the general hypothesis for why there's such a difference?
SPEAKER_01:Well, there's never really a a definitive answer, but I think it's mostly associated with, you know, lack of resources, lack of access to information, and just disparities in healthcare and giving that information, uh, or even just being heard lots of times when we're going to the doctors or visiting an ER, you know, just not being heard, I think has a lot to do with it. And then also not talking about things that go on in the family. Maybe a great art or someone had cancer or uterine cancer or GYN cancer or breast cancer, and you know, we just know that person died, but they didn't say why or how the person died. So some of those things I think attribute to it, but I think I would say at the top of that list it's not being heard and it's not examining us or sending us to have those necessary exams in the healthcare system when you're a black woman or black person.
SPEAKER_00:And then you were diagnosed with ovarian cancer. Is that linked to uterine cancer?
SPEAKER_01:It's not linked per se to uterine cancer, but it is linked to um a genetic mutation called Lynch syndrome, which is what I've been diagnosed with. And I didn't find out that I had lynch syndrome until I was diagnosed with ovarian cancer. The second time I was diagnosed with uterine cancer, I had a hysterectomy um where they only removed my uterus. Um, and so I was left with my fallopian tubes in both ovaries. My current oncologist, she had me come in for a regular checkup, which was a transvaginal ultrasound at the time, and they saw that I had um one of my ovaries was filled up with some fluid. It kind of was a warning to them to pursue further testing. And so I had a scan, which they believed that I had ovarian cancer, and the only way they wouldn't know um for sure is by uh, you know, me having surgery, and then so I did have the surgery and the pathology reports came back that I had ovarian cancer. And then from that point on, my oncologist was very diligent and you know, with the way that she cared for me. And so she had me go in to see uh a genetic counselor, and it did come back that I have something called Lynch syndrome, and so it kind of started making you know more sense to me because I, you know, asking myself, it was seemed to have been like every two years, because at first I was diagnosed at 33, then I had a recurrence of uterine cancer at 35, and then at age 37 going into 38, um, I was diagnosed with ovarian cancer. So when I found out I had Lynch syndrome, I know it may sound a little a bit crazy that I said I I was relieved, but it wasn't a relief that I had this genetic mutation, but I was relieved and knowing that, you know, most likely that is the reason why I was diagnosed, especially you know, at my age.
SPEAKER_00:What is Lynch syndrome and like what does that mean for you going forward?
SPEAKER_01:Well, Lynch syndrome, you know, is a hereditary genetic mutation that could come from either, you know, your mother or your father. It is associated with uterine cancer, colon cancer, ovarian cancer, breast cancer, thyroid cancer, uh, is associated with a host of uh different um types of cancer. What it means now for me is that I am closely monitored for early detection of any other type of cancer that lynch syndrome may be associated with.
SPEAKER_00:I've heard about it before, but I didn't ask exactly what it is.
SPEAKER_01:When I found out I had Lynch syndrome, I contacted several of my uh family members, for instance, my brothers and sisters, and I told them, you know, about it. And also, you know, I told like close relatives, like aunts and uncles. Um, I thought it was really important, you know, just in case, you know, anything was going on with, you know, any of them for any type of early detection or just to be screened. Most of them, if not all of them, do have children. So I, you know, wanted them to know for those reasons as well. And then in speaking to uh one of my great aunts, I found out a lot of information. I found out that, you know, my great-grandmother, her mom, had ovarian cancer. And, you know, I had also found out I had an uncle who died from colorectal cancer. I had an you know, two other uncles who had colorectal cancer. And then the aunt who was giving me this information, she herself had breast cancer a few years back. But again, like I said, I was relieved in a way to find out what the reason, you know, that this is most likely the reason why.
SPEAKER_00:Yeah, because I I remember you saying that earlier on you felt like, did I do something? And this was a really clear answer of yes, actually, no. There's a history there in the family. This is a thing, right? Identified in the scientific world. So that makes sense that it was a really for you in a way. Because I I think there's nothing more frustrating in life to be like, why am I the one to get the bad luck?
SPEAKER_01:You know, those feelings kind of sus subsided and they went away of me feeling, you know, like that I do something to get this, you know, diagnosis as I started, you know, relying heavily, you know, even more on my um on my faith. And then also because of the diagnosis, mostly I did end up meeting someone and not telling him, you know, at first about my diagnosis, but essentially I did tell him about it and he didn't run away. He in fact, you know, he's you know, he's still around. And uh, you know, he's helped me through, you know, my recurrence with uterine cancer and helped me get through uh ovarian cancer and going through the chemotherapy treatments, you know, all appointments, just everything. He's been very supportive in that way. So I want to give him that credit.
SPEAKER_00:That's wonderful. How did you decide to tell him eventually?
SPEAKER_01:Well, I didn't make the decision to tell him, but I'll just say that uh, you know, that we go in every three months for biopsy and and and just other follow-up care appointments. And so he started to notice that I was going to the doctor quite a bit. And then one day he was just like, what's going on? He says, you know, why are you always, you know, at the doctor? And so, you know, I had no choice but to tell him. I was afraid. And and I told him that, you know, I when I was first diagnosed that I had lost, you know, my husband. You know, I knew at some point I would have to say something, but I just didn't know the right way to tell you and just fear of uh losing another relationship.
SPEAKER_00:But the right ones meet you where you are, right? So absolutely. Where are you in terms of motherhood today?
SPEAKER_01:I'm not able to have biological children by way of me carrying them. That's true. Because I don't have a there's so many different ways to do this now. Uh I um, you know, as I said earlier, I don't have a uterus or fallopian tubes or you know, ovaries, I don't have any reproductive parts. But before having my ovaries removed, we did do some egg preservation. So um if I, you know, think about having a surrogate, then I would be able to have my um, you know, biological children. But really, um my head is not fair to do that. I am in a process right now of fostering and adopting, so it's exciting. Uh so I'll be able to extend my love down.
SPEAKER_00:Although I've heard that the adoption process is also can be very arduous and nerve-wracking. But yes, it is it is a different path to motherhood. Is there anything else that you want to touch on that I haven't asked and it hasn't come up in our conversation so far?
SPEAKER_01:Yeah, I mean, I I would like to talk a little bit about some of the work that I'm doing now. Um please. I'm working for an organization called Share. It's a nonprofit, and we focus on cancers such as breasts, uh metastatic breasts, ovarian, and uterine cancers. I'm doing a lot of outreach in the black community and offering information about the cancers that we serve. And also I facilitate multiple support groups for uterine cancer because, as I said earlier, when I was first diagnosed back in 2013, there weren't any support groups specifically for um this type of cancer. So um, yeah, I'm just happy now that I'm able to support, you know, be of a supportive source for other women and families that are going through this diagnosis. And in particular, you know, younger women, you know. So I'm focusing a lot of work, a lot of my time on, you know, raising awareness on the amount of younger women that are being diagnosed with gynecologic cancer.
SPEAKER_00:That's really awesome. Do you offer that? I imagine is it virtual right now, given quarantine for the last 18 months?
SPEAKER_01:Yes, actually, all of the all of our support groups are um virtual. It's being you know held uh by way of Zoom. So that's how we we all are meeting and connecting. Um, and it's good in a way because you know, we get to meet people from all over the world. You know, we have women in our groups from all over the United States, from Singapore, from Australia. Yeah, we're able to reach so many people. And then we have you know educational program webinars that'll be focused on young adults diagnosed with gynecologic cancer. And we're gonna have programs on just finding meaning after having such a diagnosis. I don't know if I'm able to uh give the share website if anyone's gonna be able to do that. Yeah, please do. Yeah. Okay. So, you know, if anyone wants to find out more of what we're doing at Share, you know, they can visit the Share website at ShareCancers Support.org or they can reach out to me directly at 646-817-3301 to find out more information. I'm more than happy to help.
SPEAKER_00:Well, thank you so much for taking the time to share a bit about your experience with our listeners today. I know I learned a lot.
SPEAKER_01:Thank you for having me, and I hope, you know, whatever was heard today, you know, I hope it just uplifts the next person.
SPEAKER_00:You know, losing a relationship after cancer diagnosis, whether a family member Or a friend can feel like the ultimate betrayal for cancer people. I've learned early on that some people just don't know how to deal with all the emotions and responsibilities that come with a cancer diagnosis. But it still sucks when the person you thought you could count on really is enough for the job. Like Nefaterry and other guests on the show have mentioned, when dealing with cancer, you have to prioritize yourself, even if that means ending relationships that are so important to you. But the space that gets vacated will be filled by people who can meet you where you are. And that's a wrap for today. Please follow the podcast if these stories are resonating with you. Also, I'm in the process of planning the 2022 season, so if there's a topic you would like to hear more about, please let me know by emailing info at talkabout cancer podcast.com. Thank you for listening.