Fertility preservation & egg freezing with cancer

Show notes

Dionne’s YouTube channel chronicles her fertility preservation journey during cancer treatment.  

Dionne’s oocyte cryopreservation process happened in tandem with the first steps of her battle with breast cancer.

Transcript

Marie (00:00): If you go to Dionne's YouTube channel and scroll all the way down to her earliest videos, you'll find tutorials for hair and makeup looks.

Dionne (00:10): Hey YouTube, it is Dionne here of course. And I just came to show you guys my new hair cut.

Marie (00:18): There's even a video of Dionne talking through the details of a purse she made herself, which my powers of deduction tell me that she might have liked.

Dionne (00:30): I just, it's just, I love it. I love it. I love it. I love it. I love it. I love it. I love it. I love it. And yeah, just great. And these, everything is made out of felt Jean paper and my old work pants from six flags.

Marie (00:46): Dionne is vivacious on camera. If you keep scrolling through her videos in chronological order, you'll notice a sudden change. The video that marks that change is called just be brave fertility preservation for young woman with breast cancer.

Dionne (01:06): I have Menopur and a whole bunch of other medications because before I start chemo, I can't believe I'm saying that, but before I start chemo, I'm doing onco fertility or whatever, which is just like preserving some eggs just in case I'm left barren after chemo.

Marie (01:28): Dionne's vivaciousness is still there. She's still got her bright smile on and the people writing comments on her videos notice that. They write: I love your positive attitude, you are a warrior and love your spirit girl. But behind the scenes, at that time, Dionne was feeling overwhelmed. Fertility journeys are different for everyone. For Dionne, hers began in the midst of a battle with cancer. This is her story.

Marie (02:02): This is baby steps, a podcast from carrot fertility about the many diverse paths that people take in the pursuit of Parenthood. I'm your host, Mary McCoy Thompson.

Dionne (02:20): My name is Dionne Latouche. I am a 30 year old young cancer survivor. I was diagnosed when I was 26 years old and I'm now 30 so I'm also a teacher. I'm a creative. I am a sister, a daughter and auntie. Yeah, that's me.

Marie (02:44): As you mentioned, you're a young breast cancer survivor. When were you diagnosed with breast cancer?

Dionne (02:51): So I was officially diagnosed in February of 2016.

Marie (02:58): Do you remember the moment of getting that diagnosis?

Dionne (03:02): Absolutely. I was in my classroom. I was teaching first grade at the time, but I was sitting in my classroom like grading or something like that and I got a phone call from my breast surgeon and she called me and was like, yeah, Dionne remember that test? I'm like, of course. I remember the test. She was like, yeah, it came back. You know you do have cancer. She did say she thought it was early stays, but she didn't really have much more information and I was just numb at that point, like numb.

Marie (03:35): What's going through your mind?

Dionne (03:43): My mindset literally kind of went into battle mode where it's like, at this point it's just what do I need to do to survive? How do I make sure I'm efficient throughout this process? But it's also terrifying because I don't know if you knew this, but my mother died of breast cancer in 2002. I was in seventh grade. So it was also kind of like all Lord, here's my turn. It's terrifying. But it's also like, okay, what do I need to do next? What appointment do I need to see? And like I said, mostly immediately I'm thinking, okay, I have to teach in the morning. I have math night. I said I'm very big on following through with my words. So I said I would participate in math night. So I'm like, I need to put this on hold right now so I can teach in the morning and then be there for what I said I would do that evening and then I can fall apart.

Marie (04:43): So as soon as you got this news, you are already thinking of everything that you're going to have to do. And as you said, the fight to survive and keep up with all the appointments that you're going to have. And I'm sure that you had particular knowledge of that seeing your mom go through that. As you're considering all of these things at once, is fertility even in your mind at all? Is that a question that you have yet or is that something that came up later?

Dionne (05:15): Yeah, so it came up pretty early because I know my doctor wanted to immediately, they want to start treatment as soon as possible. When we met with my doctor, there's this meeting with your family and they lay out what's going on in terms of your cancer and what treatment they suggest. That was in that initial, that first meeting is when she said, you're 26 you probably want to, you may want to explore fertility preservation.

Dionne (05:43): So they just led me to the nurse navigator and the nurse navigator led me to the genetic specialist and led me to Shady Grove Fertility, which is like a huge fertility conglomerate in this area. So immediately, like literally maybe the next week I was in for, or maybe the next day I was in starting my fertility. Yeah, by that Saturday I had already started my medication and that meeting was on Thursday, so it was immediate.

Marie (06:14): So I personally, I had no idea that chemo could so drastically impact fertility. I don't know if that's a well known thing or if I just was in the dark about this, but I really only learned that recently. Was that a surprise to you as well or was that something that you already knew was something you would have to think about when you got your cancer diagnosis?

Dionne (06:41): Was it a surprise? I don't think I had time for it to be a surprise. It was literally like, you're diagnosed, here's what you need to do. So before that, I didn't even think like I'm 26 right. I'm thinking about Ooh, I want to see cute guys and I'm not thinking about fertility at all. So I did not put the two together. But it makes sense if you literally have poison pumping through your entire body and chemo kills good cells and bad cells, of course it's going to affect your fertility. But I had never thought of it because I didn't have a reason to.

Marie (07:22): That makes so much sense. Were there questions that you had at that time? Is there anything you'd recommend someone who is facing chemo and considering fertility preservation? Are there questions that you'd recommend that they ask their doctor at that point?

Dionne (07:38): Okay, so the way that I operate, I of course you ask your doctor questions but I feel like you have been living in your body your entire life. You are the resident expert on your norm in regards to your body. So I always say make sure you know what your normal is. And that comes with before even getting to fertility preservation. Having baseline data. Do you know what your norm is with your blood sugar, do you know what you know your A1C, even if you're not diabetic, just knowing your normal so that when you do come to a point where you're looking at like fertility benefits and information, you come to the table knowing at least what your body is. But also do you know what your benefits are. So many of us, especially myself at the time, didn't really understand benefits, what comes with your insurance plan?

Marie (08:40): It might not sound like the most fun to sit down and read your insurance plan. I mean I can think of maybe literally every single other thing that I would rather be doing at any given moment, but yeah, I mean it sounds like you were able to arm yourself with that knowledge over time.

Marie (09:08): What is involved in fertility preservation and cancer treatment? Do you go through the fertility preservation process first and then you start chemo or is it something that happens concurrently?

Dionne (09:21): So I think it depends on a few factors your age, whether your doctor even thinks it's important and even wants to suggest it. If I was stage four, I'm sure she probably wouldn't have had that conversation with me. In most cases, I can't speak for all, but I believe in most cases fertility preservation comes before chemo enters your body because the or any treatment begins. Because the concern is that the treatment, the cancer related treatment will suppress or impair your fertility. But that also depends, like I said, on the type of cancer you had. I think most people it's before they start treatment and right up until. I had my harvest, or my egg harvest harvesting literally was a day before I started chemo. I walked into chemo, doubled over in pain because it was just back to back to back.

Marie (10:21): That is so much on your body. And when we're talking about fertility preservation, is that just egg freezing? When we talk about egg freezing, is that the same thing?

Dionne (10:33): Yes. Preserving my fertility meant freezing my eggs because that's a whole nother deviation is who gets to preserve eggs versus sperm versus embryos. If I was married, and this is a whole area of legislation that really is not developed, but I technically fell into a kind of gray area because I could not create an embryo, right? I would need a sperm to have an embryo. My insurance plan covered embryo cryopreservation, but they wouldn't cover egg cryopreservation.

Marie (11:17): No way.

Dionne (11:19): Yes. And they're able to get away with that because there is no legislation. So let's say I was in a same sex marriage and we wanted to reproduce, we would have to... And here's the irony, they covered everything. Like the medications, or most of the costs with medications, with the actual harvesting. But it's literally the freezing and the first year storage they would not cover for eggs, which was, I think it was like one thousand 800 something dollars where if it was, if I was married, I would've had a husband too who would have been on my plan and I or I don't know if he had to be on my plan, but I would have had somebody to provide that sperm and it would have been covered because it would have been an embryo. So people, there's all kinds of caveats.

Marie (12:15): That that just does not seem right. Yeah.

Dionne (12:18): The law, there's no law to protect us. So it's fair. According to my employer, which is a government backed entity.

Marie (12:28): Yeah. So what then is the actual fertility preservation process like? What was that experience like for you?

Dionne (12:37): Nuts. Oh my gosh, it, it was crazy. It's all timed based on your period. So I think my first period was probably that Saturday or I think it was that Sunday.

Marie (12:50): And this is just to clarify, you mean the Sunday after you got your diagnosis of breast cancer?

Dionne (12:56): Yes.

Marie (12:57): Oh my goodness. Okay. So I'm just getting a sense of this really speedy timeline and everything that's being thrown at you at once.

Dionne (13:04): So there was literally I had to go through one period cycle, but it was a month and in between that time, those three weeks was shooting myself up with shots, taking pills literally everyday. But it's like each day you'll have, based on your blood work, when you go in early in the morning to the fertility clinic, they will tell you or give you a different, okay, take this medication on this day, come see us in two days and keep taking this medication. Like it's very, very meticulous.

Marie (13:41): While Dionne was preparing for oocyte cryopreservation or egg freezing, she also had to prepare for chemotherapy. This meant undergoing port placement surgery. The port placement means implanting a small device in the skin so there's a way to administer intravenous medication during cancer treatment. Once that was complete, Dionne still had to finish the preparation for her fertility preservation.

Dionne (14:13): So every day when you go in you get your blood work check to see where your hormones are and they also do a trans vaginal ultrasound to check how your follicles are growing because the medication they give you is to literally produce as many eggs as possible. And for me as a 26 year old, completely fertile woman that meant in the end and I'll fast forward, I harvested 33 eggs.

Marie (14:45): That's phenomenal. Wow.

Dionne (14:47): Yes but it was so painful, right, because they grow them super quickly and I'm like, why do I feel like I'm pregnant right now and I've never been pregnant like it was, it was a lot. I was still convinced. I was like, I am going to live and life as normal as possible. But that also meant I'd had to carry around a lunch box that had my medications in it because it needed to stay cold. So I was like, I'm going out to dinner with my friend. I just have to at six o'clock go give myself this shot in the car, you know?

Marie (15:20): Can I ask you, when you're saying like you want to live this normal life for this period, how much of that is related to you knowing that you're going to start chemo soon and you'll have to change your life pretty dramatically? I mean, is that sort of what was going through your mind or was it just like, well I might as well?

Dionne (15:38): I wanted to work through it. That's what I was thinking. I didn't realize I would have to stop working because some people can work through chemo, some people can't. My mom was able, and she's my inspiration. My mom was able to not only continue working, but she was doing her internship, she was getting straight A's at GW and with her masters in special ed. And she actually got to that point. She died in February and she was supposed to walk in May. So my example...

Marie (16:11): Oh my gosh.

Dionne (16:11): I know and I just finished my master's like a month ago or like three weeks ago. So I feel like I did it for my mom. Yes, but I could not work through that. I thought I was going to be able to, so that's where my head was. My mindset is just trying not to make a big deal out of things that even could be essentially, they are a big deal, but I'm not going to mentally play it up in order to get through it.

Marie (16:39): Yeah. You know, just fertility preservation, cancer treatment, it's no big deal.

Dionne (16:47): In hindsight. I don't think that's the healthiest thing though. I do think if there was a way for me to have, I should have already been in therapy. I feel like every human on earth, just because of life should always, just the way that we have food in our refrigerator, we should also have a therapist. It's just a norm. I didn't have that and I think it would have been beneficial to have somebody throughout that entire period to help me process everything. Because I do think now I have residual, what in the world did I just go through? Emotions still associated with just powering through. So it was helpful, but fertility preservation's a lot and for me fertility preservation was just the precursor to my cancer journey, which is nuts.

Marie (17:53): It's interesting how just the recommendation to go to therapy has definitely come up a few times on this podcast and I couldn't agree more. I think it is such a good investment in yourself and especially with something like you are going through. How did your cancer treatment go?

Dionne (18:14): It went literally according to plan. I always had in the back of my mind, Oh my goodness, what if things go awry and I end up, I've experienced what we don't want to happen. I've experienced death close to me as a result of cancer, so I knew what that reality was and I was just hoping that it was not and it wasn't. So literally everything went according to plan. I did literally all the treatments they say you can do. There was chemo, well fertility preservation. I did chemotherapy also with targeted therapy at the same time and went to was all through IV radiation hormone therapy, which for me I'm still going through hormone therapy, which is a pill every day. Tamoxifen and a shot in your behind every month I did radiation, which was probably one of the worst. The side effects from radiation I'm still feeling today.

Dionne (19:11): I did a double mastectomy and immediate reconstruction with tissue expander placement and I actually just because of the effects of radiation, I just finished my breast reconstruction. I had surgery in February of this month. I had it in June and yeah, I'm just waiting to get my tattoos now. So everything has gone according to plan other than radiation cause I, we did find out I had a gene mutation that most likely made me more sensitive to radiation. So my skin, I ended up with capsular contracture and the implant almost popping out because my skin or the expander almost popped me out cause my skin was just so burnt. It kept squeezing and squeezing. It was just rough. But other than that, everything like it was hard. But everything went according to plan.

Marie (20:10): I love that you are just focused on how everything went according to plan because what you described sounds truly hellish and I am in awe of what your body had to go through to get to this point.

Dionne (20:25): Yeah, and to know that I had it good in comparison to other people, it's crazy. It's crazy. I'm just glad that I'm at the point where people can look at me even with no makeup on and not see cancer patient. I'm a believer and I believe that God restores. I also believe the power of the mind and making sure you are in keeping yourself in a positive mindset will do your body literally so much good. Literally on a chemical level, there are positive endorphins released when you're in a good head space.

Marie (21:09): I fully agree with you. I think that's true. I also think it is way easier said than done. And so the fact that you were able to maintain that is no small feat. And I know too from your YouTube channel and the people commenting is that's one of the most common things that people say is they can't believe how positive you remained through the experience. Were there times though when that was harder than others? I mean, I'm sure that you can try as hard as you can to keep that attitude. But what about the times when you just can't keep it together?

Dionne (21:47): Yeah. Thank you for saying that. Because I was getting ready and I don't want to start crying now I get emotional thinking about it. That is one thing that I've very much don't want to fake and hide. From my third treatment to my sixth treatment. It was hell. It was hell. And I have a video on my channel of me just crying because it's real. It's so, it is not easy. And I'm 26 my friends around me are getting married, they're having babies, they're going to the fair, they're all doing all this fun stuff. They're eating sushi and all this stuff that I cannot do or don't have energy to do. That was hard.

Dionne (22:31): It feels like this is not fair. It's like why? Why? Why is this, what did I do to deserve this? But I always like to keep things in context and this is not the worst that you could experience or that you can't experience. It's not the worst that somebody in life has experienced and everything is temporary. That was my phrase, everything is temporary, the negative is temporary, the positive is temporary. So let me just keep, just push through.

Marie (23:07): Where do you think you get this perspective that you carry of thinking about how things could be worse or just thinking that there are things to be grateful for in every moment? Where does that come from?

Dionne (23:24): A couple places. I think number one, like I mentioned, I was raised in the church and even now my relationship with the church was a little complicated, but whether you look at the Bible from a religious standpoint or just like a historical text, some of the stories in the Bible are just like you went through what and you were able to get through. So I think from being raised in church and hearing the Bible stories and my faith in God, but then also like I said, seeing my mom go through it teaching and going through grad school at GW, still being married, going through treatment, raising three girls. My immediate example was phenomenal. But on the flip side of that I have learned you don't always have to power through. This year my focus is just to rest.

Marie (24:25): It sounds like you more than deserve to take arrest after all of that. Yeah. I really liked hearing where you draw strength from. I want to ask you what are your hopes for your future and sort of related to fertility, do you have plans to start a family in the future and what things are you looking forward to?

Dionne (24:53): Absolutely. I would love to have a family. I would love to have, I always say this and people like what is wrong with you? I would love a family of eight kids, but the husband living in this nice house where everyone chips in and we have like a family business, I have all these grand ideas that I never really talk about until somebody asks me like this. So we'll see what the future holds. But until then I'm paying rent on my frozen embryos. It's like $650 a year where I have them stored now and we'll see what happens. I have 33 of them right now. I'm just focusing on rest and pampering myself and feeling good.

Marie (25:41): Rest and pampering and feeling good are definitely things that Dionne needs and deserves right now. And maybe in the future we'll see another video on her channel, not about fertility preservation and cancer treatment, but about a new purse that she has made herself.

Marie (26:07): Baby Steps is a podcast from Carrot, the leading global fertility benefits provider for employers to demonstrate how carrot helps its members. I am here with Adam who is the head of carrots care navigation. Hi Adam.

Adam (26:21): Hello.

Marie (26:22): I'm going to read a question that you have received from a carrot member and I want you to walk through how you would help that person. So here's the question from the carrot member. I've been recommended by my oncologist to have my sperm frozen before starting cancer treatments, radiation and chemotherapy and wanted to find a provider near me to do so.

Adam (26:44): Great question. So there's a couple of components there. First off, we're going to look at the members location and research clinics where they can receive care for oncofertility. Not every fertility clinic will accept individual males for consultations or have the facilities to preserve sperm. So on our side we do the leg work and help the member find the best clinic where they can receive care.

Marie (27:07): Great. Thanks Adam. To learn more about Carrot, visit carrotfertility.com. Baby Steps is produced and edited by me, Marie McCoy Thompson, and also edited and mixed by Jim Metzendorf, who was so understanding and helpful when I was sick last week. Our original music is by Chris Ploeg and Chili COrder, whose music kept me feeling upbeat when I was sick last week. And our artwork is by Allie Packard, who sweetly checked in on me multiple times when I was sick last week, and I am finally feeling better this week. Hope you're all staying healthy. This has been an All Turtles production. Thanks for listening.