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In this episode, Colorectal Cancer survivor, Abby Bott, shared her interesting story with me. Here are the links to the articles she mentioned during our conversation:
The Discover Magazine article about her experimental fertility preservation procedure.
A video of Abby discussing her fertility preservation procedure.
Lee: Hi Abby, welcome to the show. Thanks so much for joining us. How are you?
Abby: Hi, Lee. Thank you so much for having me. I’m doing really well.
Lee: Oh, I’m glad to hear. Really well is what we always want to hear. You and I met briefly at Live Your Best Life 2015 in Arizona last fall and it took us this long to reconnect and get a chance to share your story, but I’m glad we’re able to have the opportunity to do that.
Abby: Yeah, it was too briefly. There were so many great people to meet and such a short amount of time to meet everybody in, so I’m glad we’re doing this.
Lee: I am too. So, for our listeners that may not know you and know your story, you were diagnosed so, so young. Tell us about that.
Abby: Yeah. So, I was twenty-two when I started having symptoms and I’d just turned twenty-three. I was still in college in my last semester at U of I in Illinois and I was diagnosed with stage three rectal cancer at twenty-three.
Lee: Goodness. Now, did you run into the trouble that so many young survivors have run into, trying to get a doctor to believe your story and understand the severity?
Abby: I think I had a few different complications. I think I was part of the problem: I didn’t go into the doctor as early as I should have and I had a stressful semester and I thought, okay, I have an ulcer or something. I’ve never had anything up until that point that didn’t clear up on its own, so I took my symptoms to mean, okay, something’s wrong but I don’t know exactly what, but then I had all the typical blood in stool and realized that I was losing weight and not meaning to lose that much weight, and the symptoms just started adding up. And so it took me going into the school health facility and saying, “What’s going on?” And I don’t think that they’re necessarily equipped to say you have cancer, so it took several rounds of going in to see different doctors there and then they referred me over to an actual gastroenterologist who was able to do the colonoscopy. So, it was just from the colonoscopy where the doctor came out and immediately looked horrified for me and said, “This is really bad – you need to go see an oncologist and a surgeon tomorrow for a consult.” So, once I was diagnosed, things sped up so fast, but it took myself a while to get it together enough to go see the doctor and then a few more months before I was actually having that colonoscopy.
Lee: How did you and your family handle that news?
Abby: Well, by that time, honestly, when I was first told “You have a large tumor,” I felt kind of relieved, just because it was like, okay, here’s your diagnosis, finally, and it just felt like let’s figure out what to do now. It was so many months of wondering what was wrong and worrying, and I was trying to go to class and finish my degree and there was just a lot of stressful factors in that time, so it was good to just know what it was and to try to move forward, even though I know that every doctor gave me the pity and horrified look of like, “This is really bad.” But for me it was relief, weirdly enough, and of course my parents were devastated and everybody was shocked. You don’t expect that at twenty-three.
Lee: No. No. So, what was the treatment plan that was prescribed for you?
Abby: So, I immediately had a port put in and I saw my oncologist and saw a whole lot of doctors in those first few days, and one of the people was a younger nurse practitioner, and she was not that much older than me; she was probably younger than how old I am now at the time, but she said, “We’re going to have to do chemo and radiation and if you don’t do anything to preserve your fertility, that is probably going to be lost. Is that something that you’ve thought about?” And being twenty-three, of course I hadn’t, so very quickly she referred me to a specialist who advised that I go to Northwestern in Chicago and have a– at the time it was an experimental surgery to have one ovary removed and cryo-preserved and to just go through the fertility preservation before I started the chemo and radiation.
Lee: That’s amazing the nurse practitioner of all people, and I don’t mean that disrespectfully, but that kind of sounds like it just really came out of the blue that she would think of that. How amazing is that?
Abby: Yeah, and I think, now looking back, I think it was because we were so close in age and she’d gone through school and she was probably on the verge of thinking about having children herself, and maybe she just felt more like, “Oh, this could be me or anybody my age,” and she was thinking about it for me, luckily, because I wouldn’t have thought of it.
Lee: Right. So, tell us more about this. This was pretty experimental at the time, wasn’t it?
Abby: Yeah. So, I was told that it was, like I said, an experimental surgery. I was told that it was going to be one of the first hundred people ever to do it, and the hope was that they would remove the whole ovary and put it in the freezer and they moved another one, just kind of pinned it somewhere else to try to get it out of the radiation field so it wouldn’t be affected. And that was the hope, and they had said, I think at the time – and this was in 2009, late 2009, so it’s been a number of years now, so science has definitely unfolded more, but at the time, all of this was experimental – and they told me that at the time about ten babies had been born through this, so I thought, okay, well, that sounds more promising than having no options. Because of the size of my tumor, it was like softball-sized and it was stage three rectal cancer and I’d already been having symptoms for so long, so my oncologist wanted to immediately start chemo and radiation. So, to do that, I didn’t have the amount of time that it would take to extract eggs or do any other options for fertility preservation, so this was kind of it, and since that was it and that’s the direction I was told to go when I was completely blindsided by all of this, I just followed and did what my doctor told me and said I would rather have options than no options later if I survived this. But it was a very hard decision a the time, because my parents even said, “What if waiting another week to do this surgery before you start chemo and radiation, what if that affects your life? What if you’re putting hypothetical children in front of your life now?” So, it was a really hard decision to make, but I just felt like it was the decision for me at the time, and now I’m still glad that I have options. So, one of the great things about all of this surgery and the experimental and the science part, an article just came out in Discover magazine just this week in the September issue of Discover about this cryo-preservation, and the doctor at the oncofertility at Northwestern who started it all, and then I’m featured in the article, so–
Lee: I was just going to ask you about that. How did that come to pass that you wound up connected with this article and featured in it?
Abby: Yeah, so, I mean it’s really cool to have seen this come from 2009 to me having surgery to now I’m in a magazine, but I also did a documentary-type patient navigation-type film for Northwestern, because there were only a handful of us who had done that surgery up until that point. So, on the oncofertility website through Northwestern, there’s a patient navigation and you can click on different videos and see testimonials, like stories of people who have done this and had options and people who have had children as a result, and so I think it’s a really good patient navigation tool. So, somebody at Northwestern connected the author from Discover magazine who wanted to do a larger article about it, so they called on me.
Lee: Oh, and now you’re famous. [chuckles]
Abby: And now I’m famous. [chuckles]
Lee: So, for the listeners, I’m going to repost that video on the accompanying post with our interview at TheColonCancerPodcast.com so people can see it right from our website too. Now, if I have the story straight, at what point did you realize and was this– was the cryo-preservation before or after when you found out that you wound up needing to have a full hysterectomy?
Abby: So, that came– well, the cryo-preservation came first. So, I was diagnosed in 2009, I had that surgery in 2009 and then I followed that up with chemo and radiation and the surgery to remove my tumor and a whole lot of other treatment and follow-up things. It wasn’t until years later in 2014 I was having some other issues, and I was twenty-three when I was diagnosed, which is strange, so it turns out that my family has Lynch Syndrome, and I didn’t actually know about my genetics before I had these symptoms, and it had just come about through my family and through the referral to genetic counselors and all of that. So, I have Lynch Syndrome and that is, as you probably know, something that gives you like an 80% chance of getting colon cancer throughout your life and something like a 60-70% chance of endometrial-type cancers. Some of my aunts and my mom had had uterine cancer, so it was due to complications and then the high risk of cancer in the future that I did have the hysterectomy years later in 2014.
Lee: All right, just for clarification so people don’t think I’m a total idiot, obviously you couldn’t have had the preservation surgery after the hysterectomy. What I meant to say was the decision process: which came first? So, I just wanted to clarify. As I’m listening to you speak, I was like, that’s not what I meant, but I know that’s how it came out. So, yeah.
Abby: Sorry to interpret it the wrong way.
Lee: No, you didn’t, it was my fault; I wasn’t clear. And for listeners who are looking for more information on some of these hereditary cancer syndromes, if you go back in The Colon Cancer Podcast library, I’ve had the pleasure of interviewing Georgia Hurst and Ellen Matloff, I think that was episode ten. Georgia Hurst started her nonprofit IHaveLynchSyndrom.com and they run a terrific Facebook group called GenCSM, which stands for Genetic Social Media Facebook page, so check them out at GenCSM. And I also interviewed Dr. Travis Bray, I believe – I’m doing this from memory so I could be off, but just check The Colon Cancer Podcast website – I think it was episode seven. He is a FAP survivor and he and his wife Shawnie have a wonderful foundation and website called HCCTakesGuts.com, I think it is. I’ll post it on the website where people can get more information on these hereditary colon cancer syndromes. So, you didn’t know about Lynch until after you were diagnosed?
Abby: I did not know I had Lynch Syndrome. I actually didn’t know filling out forms in the doctor’s office and they ask you, “Do you have a family history?” I always said no because I didn’t realize and I didn’t know that I actually really have a long family history of colon cancers especially, but then endometrial cancers as well. I don’t really know if my family knew that there was a name for it, Lynch Syndrome – I think a lot of people just thought we have a lot of cancers, but even if they did, Lynch is kind of a relatively new term in the last few decades. So, I didn’t know until my parents were with me the day after I had my colonoscopy and then I had to go to the surgeon and the oncologist the next day and I was filling out those forms again and it said, “Do you have a family history?” And I said no, and my mom was like, “Well actually, yes.” So, she knew that her brother had had cancer and her father had had cancer and it was just not one of those things that came up at family Christmas and I didn’t know. So, I’ve definitely preached to know your family medical history to other people, because now I do know and now I know how far back it goes and what Lynch Syndrome means, and its appropriate screenings and things like that now, but I didn’t know then.
Lee: That’s funny you mention Christmas dinner, because when I interviewed Georgia Hurst and Ellen Matloff last year, they were saying that is the best time to talk about it because that’s when you have all your family together, and it’s one of the rare times in most families that you have as many family members together and it may not be what you want to talk about at the dinner table, but it is a good time to ask those questions and know about it. So, I find that kind of funny that you used that correlation there.
Abby: Yeah. Well, I completely agree, and actually ever since my diagnosis, I’ve made a strong point to be the family advocate, and we do have those conversations now at Christmas. But, you know, my mom is one of seven children and I have a lot of cousins and with her side of the family we did only get together a couple, two, three times a year then and I just feel like now we, my many cousins who could have Lynch Syndrome, we talk about it now. The first Christmas that happened after my diagnosis, I couldn’t make it to their celebration, so I wrote up a letter, like, “Hey family members, read this at Christmas because I can’t be there to tell you to go get screened for this.”
Lee: Good for you. Good for you.
Abby: It started with my family, the advocacy for it, and I just worked my way out.
Lee: Well, speaking of that, I found it so interesting in reading your story, you know, so many people are able to share, or are fortunate to share, that something good comes from this, and for you, your experience with cancer led you down a new career path. Tell us about that.
Abby: Yeah. I mean, I think a lot of weird blessings have come out of something so terrible, but I went to school for psychology, and then in my last semester there when I was– a wrench was thrown into my whole life plan, I didn’t know anything about insurance or anything about the medical world at all, and I didn’t know anything about what I needed to know; I didn’t even know my family history. So, advocacy and knowing the medical world more has become really important to me, and sharing that knowledge with other people is really important to me now. If I can help anybody with my story, I want to. I found a nonprofit in Illinois after I was healthy enough to work, and it was called Campaign for Better Health Care, and I thought, that sounds like exactly what I want to do with my life. Of course I want to campaign for better health care. So, I started working there and they led me to the current organization that I’m at, which is a health policy and advocacy nonprofit here in D.C., and yeah, I just hope that I can help other people navigate the system better and maybe make it better from within. I’m on the other side now, so we’ll see where it goes from here.
Lee: So, let me ask you this as we wrap up, and I know you’re one of our loyal listeners and I really appreciate that, so you know how I usually wrap up with a question that– however we want to shape it, if someone who’s listening, they were recently diagnosed or are hesitant to speak up because they’re young and they don’t think anything’s really that serious, knowing what you know now, what advice, Abby, would you give to someone in either of those situations, or even to someone who may be caring for someone who was recently diagnosed? What would you– what are your words of advice?
Abby: So many things. I think if you can, know your family medical history, and if you are newly diagnosed or you think something is wrong, to always listen to your body. I went against my better judgment and didn’t go to the doctor as soon as I should have, and I let a lot of fear get in the way of going to the doctor – fear of what the diagnosis could be or what is my body doing, or even just like the financial cost. I was in college, so I thought going to the doctor, health insurance and all of that involved was going to be too much for me to handle, but obviously going sooner would’ve been better than waiting. So, I would just listen to your body, and as far as things like fertility preservation and all the taboo topics that maybe doctors don’t bring up, I think you should definitely bring it up and ask everything you want to ask, and if you don’t get the answers, as a different doctor and always get a second or third opinion on things that you’re not so sure about, because no doctor’s going to give you the same advice. So, just be your own advocate.
Lee: And if someone is in that similar situation, particularly around fertility preservation, can they find you on Facebook and reach out to you for just words of advice?
Abby: Yeah, absolutely. I’m always open to meeting new people and I would love to use my story to help anybody else, so I’m definitely out there on social media.
Lee: You are. You are. And that’s another reason why I’m glad to have you on the show and that’s why we do this is so that people like you, Abby, can serve as an inspiration to someone else that may have just received the devastating news and all these things are running through their head, and now they get to hear your story and what you’ve done, and you can kind of be a guiding light to some of these folks, so thank you for that, and I’m glad to hear your health is good and I wish you nothing but the best, especially in that department, that it stays good. And we were just chatting before the show started and we all know how important, especially those of us who have been through the cancer journey or are still in the midst of it like I am, that birthdays are a wonderful thing, so an early– so, I think when this comes out, actually, we will have passed your birthday, so I will then go ahead and say a happy very special birthday to you. Our birthdays are a day apart, which is very cool.
Abby: Yeah, happy birthday to you too. Thank you so much.
Lee: Yes, and I just want to wish you all the best.
Abby: Yeah, thank you so much.
Lee: Thanks, Abby. Take care.
Abby: You too.