Transcription:
Meet Cancer Survivor, Mary Best

Bill Klaproth (Host): “Even the darkest night will end, and the sun will rise." That is a quote from “Les Mis” and shared by the woman you are about to meet. Mary Best is a cancer survivor. She is a guest blogger for Roswell Park Comprehensive Cancer Center, and she’s going to share her story and experience as a cancer survivor. Mary, thank you, for being on Cancer Talk. Let’s start at the beginning. Tell us about your journey through cancer, and now your survivorship. If you can start at the beginning -- tell us about your diagnosis and take it from there.

Mary Best (Guest): Absolutely. Right after I graduated college, which was December of 2013, I moved to New York City with big dreams and ready to conquer the world. I had a great job, was really enjoying myself, but I had some symptoms and things that were making it hard to enjoy my life and just had me concerned a little bit. I went to an Urgent Care facility in Manhattan near my work, and they recommended I get an ob-gyn to go look at everything to make sure I was okay.

I ended up going to many different appointments to scan this and that, and see -- is a cyst, or is it endometriosis, or what could be going on? What happened was I went through a couple of ultrasounds and my doctor – she was incredibly friendly and just very honest, and I really liked her – she recommended we do a laparoscopy, which is just an easy surgery where they make very small incisions and send a scope camera in to look at everything. She said she was expecting to find endometriosis. She wasn’t sure, but that’s what she expected, and if they find any, they want to get rid of it.

I went in for surgery – this was just about three years ago – and go everything removed, and it was fine. I was to be on my way, five days of recovery at home, and then back to work. On the fifth day, I actually started feeling incredibly nauseous and feeling really sick, so I had to go back to the doctor. They thought I had an infection from surgery. I meet up with my doctor, and she called me into her office, and she’s like, “Well, I need you to come in.” I said, “Okay.”

They pulled the labs from what they had taken out of me from surgery, and they also had removed my appendix, and she was saying, “Well, we looked at the samples, and everything was what we thought it was except your appendix.” And I said, “Well, what was it?” I had had a one-centimeter stage one carcinoid tumor on my appendix. It was totally found by accident, but because they were doing the surgery for endometriosis and not something else, they weren’t sure if there was anymore, so she said based on her knowledge of the cancer, which was very limited because it’s not a cancer that’s researched or known much about. It typically occurs in older adults – or it’s not symptomatic until people are in their late 40s or even later in life. There was nothing to go off with that kind of a plan. She just said, “We need to get you scanned quite a bit,” to make sure it’s not anywhere else.

I ended up having to move back to Buffalo, which is where I’m from, and one of my cousins actually went to medical school with one of the – a lot of people that work at Roswell know a lot of doctors in the area, they’re also local. They said, “Why don’t you try talking to some of these doctors – these oncologists?” I met up with a great oncologist that did his residency at Roswell, and he recommended I go there for scans, as well, for a second opinion, because they really had never seen this kind of cancer in such a young person. They wanted to be sure that there wasn’t anymore, so I went through colonoscopy and endoscopy. I’ve been scanned every which way, had to drink all kinds of weird radioactive whatever, to get these things checked out. That took about three months to go through all of those things.

At the end of July in 2014, a few months after the initial surgery, I was given the all-clear. They couldn’t find anything else, and I could officially say I was in remission.

Bill: Wow, what a story. So, they found the cancer by accident, but thank God, they did. It was good you went through all those tests just to make sure and know now that you’re cancer-free.

Mary: Yeah, absolutely. Had I not had that surgery, which was totally optional – my doctor was really great about not pushing to have it if I didn’t want to, but I was one of those things where I said, “Well, I’m having this pain, you might as well do it.” And then next thing you know, they’re finding this thing, which, depending on – it’s a pretty slow-growing cancer and because it usually doesn’t get to a symptomatic stage -- which is three or four -- for another twenty years, who knows how long it could have been until they found it, if they ever find it, you know?

Bill: Right, amazing. So, in your survivorship, Mary, what, so far, has been your biggest challenge?

Mary: I’ve had a very unique challenge in the fact that a lot of people have the different stages that I’ve noticed other survivors I’ve talked to where you’re diagnosed and then you have a surgery and some sort of treatment, but for me, I found out I had it after it was already gone. I had to grapple with the emotional side-effects of being told you have cancer and what that does to you and how you think about your life, but then also, all of the fear where all of a sudden – you didn’t just have it, we got rid of it – it might not be over. The biggest challenge for me has been trying to really keep on top of my body and listen to things.

It’s funny, sometimes when I would be worried about something coming back or whatnot, everyone always says, “Well, that doesn’t happen to – it only happens to 0.1% of people,” but the type of cancer I had and the location I had it at my age, I am in that 0.1% of people, so that’s never helpful for me [LAUGHS]. It’s just been a big challenge to even deal with it and because I don’t have these certain landmark days where I finished treatment, and I can – there’s different steps. We went out of order, and it made it really confusing to deal with, and it’s something I’m still dealing with three years later.

Bill: Well, it’s still very real to you. Even though there’s a small percentage of it happening to the population, it’s very real to you because you went through it.

Mary: Oh, absolutely, and even since then, every time – it’s not even like I had something that’s very commonly known where it’s something like breast cancer or lung cancer or something that everyone seems to know someone who’s gone through it, but every single person I had to tell or needed to know, I have to then go and explain this disease that, until I got it, I didn’t know what it was either. I had never heard of it. There’s that whole other layer where people are like, “Is that even real? What is it like?” It just made it so confusing.

Bill: Right, well you’ve already mentioned the role that Roswell Park Cancer Institute played in your cancer testing. Can you talk about the Survivorship Center at Roswell Park Cancer Institute and the role it’s played in your life after cancer?

Mary: Sure. Well, the funny thing is, I had gone for many appointments for the different scans and the consultations, and I loved my team of doctors at Roswell. They had offered up to me a chance to attend a Neuroendocrine Tumor Patient Conference, which they have very year – and that’s the type of tumor that I had had. I was so excited to finally connect with people that were going to understand what I was going through. What did not really connect was all of the other people who typically get diagnosed with what I have are like I had said earlier, later in adulthood and are usually much older. I walked in this room, and I was the youngest person by at least twenty years. No offense to the other patients in there, but it was impossible to relate to the same situations because nobody had been my age when they went through it, and it’s so different when it happens to you when you’re a young adult. I had my mother with me, and they all were asking my mom how she was doing, and her treatment and they thought I was the caregiver. It was so weird.

I had called Roswell to be like, “Is there counseling or some services that I can take advantage of?” because I was having a lot of trouble dealing with this. I wasn’t really finding many other people that I could relate to. So then, I ended up getting sent around a couple of times via phone, and I heard about their young adult program. I went to a couple of events – they have social events and a support group meeting. I went to a couple of social events, and even though they were really fun and you’re meeting some new people, nobody is really talking about their experience because you’re there to enjoy yourself, but then I went to a support group meeting. It took a little while for me to really open up because it’s a bunch of strangers, and you never know if people are going to judge you or what’s going on, but I met all of these phenomenal people. I’ve been going for just over a year now pretty regularly to all of the events and to the support group meetings, which are now held in the Survivorship Center. We’re all thrilled to be there once a month.

It’s just been really wonderful to be able to connect with all of these other people. Now they’re not just other people from my group; everybody’s becoming friends. We’re developing these great relationships and helping each other out, like last – when a new person comes, and sometimes they’re scared, or they’re dealing with things that they don’t – their friends don’t understand, but we all do, it’s just such a comfort to have that there.

One of our physicians – the physician in charge of the young adult program, is very involved in the Survivorship Center, so every time we meet she’ll have a new list of things that they are ready to offer, and we can start using like free counseling services and some of the holistic remedies -- we can have acupuncture done – and it’s all for free. A lot of these things that we would really like to take advantage of, but a lot of times all being young adults, we don’t have access – we don’t have all this money that we’ve had saved up that we could take care of an emergency like this. Everybody got hit at a really hard time in their life to have to deal with this disease and the aftermath. All of the different things that they’re offering, even just for free – and there’s no worry. All you have to do is go to the same place you’ve been going for years with all of these great people, and they’re still taking care of you.

Bill: The Survivorship Center has become a major benefit to you in your life after cancer, so thanks for sharing all of the great things they do there at Roswell Park Comprehensive Cancer Center. And Mary, we’re happy you’re cancer-free, and thank you, so much, for sharing your story today. If you want to see Mary’s blog, just hop on over to RoswellPark.org, that’s RoswellPark.org. Mary, thanks again. You’re listening to Cancer Talk with Roswell Park Comprehensive Cancer Center. I’m Bill Klaproth. Thanks for listening.