thyroid cancer: what it feels like
16 minute read
marley cameron's doctor kept putting off her symptoms until a nurse noticed a swelling on her neck.
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marley cameron was just a teenager when she began to suspect her constant fatigue wasn’t normal. it wasn’t until she was 20 that a nurse felt her neck and noticed swelling. as a young adult, marley had to deal with a very real and frightening diagnosis: thyroid cancer.
in canada, thyroid cancer is the most frequently diagnosed form of cancer in young adults, those between 15 to 29, according to thyroid cancer canada. however, those aged 45 and older are at the highest risk. in 2020, an estimated 8,600 canadians received a thyroid cancer diagnosis.
now 27, marley has lived through two relapses and will likely have to return for more treatment in her lifetime. but throughout it all, marley has learned not just how to survive, but to thrive.
this interview has been edited for length and clarity.
what led to you being diagnosed with thyroid cancer?
i was diagnosed with metastatic thyroid cancer when i was 20 years old, so about seven years ago. i relapsed in 2015 and in 2018 and i now live with metastatic cancer, but it’s stable. i have a tumour, it just hasn’t changed in two years.
it was a really long battle to get a diagnosis if i’m being honest. thyroid issues can mimic a lot of hormonal problems that would go along with puberty: weight gain, acne, menstrual issues. probably around 13 or 14 years old i started feeling sick and it didn’t matter what i did to take care of myself, i just couldn’t get on top of my health. i was fatigued, i was gaining weight. my family doctor at the time really didn’t investigate any further, he just told me it was puberty.
then, when i was getting past the point of puberty or where i should have been starting to see an improvement around like 17 or 18 years old, he started shifting the blame from puberty to my own action. i was overweight because i wasn’t eating well enough or exercising well enough when, in reality, i had been a dancer for 13 years and i was very active and ate very clean. my hair started falling out and, apparently, i was using the wrong shampoo. my skin was bad and i wasn’t washing my face well. he was just always finding an excuse that didn’t involve any actual medical testing. i had really started to feel like maybe some of what was happening to me or the feeling in my body was in my head, you know? that it wasn’t real and i was doing this to myself mentally.
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it’s not really a fluke that i got diagnosed, but it kind of is. i went to the doctor’s office to have a prescription renewed and my family doctor had called in sick that day. so, i saw a nurse practitioner to renew my prescription and i thought, i’m going to talk to this one last medical professional and if nothing comes of it then that’s just how i’m supposed to be. maybe everybody feels like this. i talked to the nurse about it and she felt my neck and could feel that i was significantly swollen in my thyroid area. and that’s what started the ball rolling for diagnosis.
you mean that your doctor didn’t even take it that far?
he did not touch my neck. he didn’t do blood work. he didn’t do imaging. he just had every excuse as to why i was feeling this way apart from actually looking to see if there was something medically wrong.
what did that feel like, when someone finally said that something is wrong here?
i’ve had a lot of time to think about this, since my initial diagnosis was seven years ago. initially, i was very angry and scared, of course, finding out that it was cancer. but there was also a lot of relief that came along with it and closure to some degree because i wasn’t making this up in my head. i finally had an answer, even though it’s not an answer i would have wanted to get, it was an answer. it was also validating to have somebody actually listen to me and hear my experience and take value in the fact that i understand my own body.
i was diagnosed three days after my 20th birthday. the process started when i was 19, but the actual diagnosis was when i was 20.
when you’re 20, how do you cope with that sort of diagnosis?
you don’t (laughs). probably not in the most effective way that i could have dealt with it, looking back.
i found out on a friday and that night i drove to cochran, ontario for a wedding with all of my family. i didn’t tell anybody – i spent three days up there holding onto this so i didn’t ruin the wedding, so to speak. then i started to explore it a little bit more and do some online research about it, which was a terrible idea. i withdrew a lot.
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i was dating my (now) husband at that point, but we had only been dating for six months when i was diagnosed. he was there for me – he’s been very supportive since day one. but there was a point where i gave him a note that said, “you don’t have to stay.” we were 20 and 25 years old, and what 25-year-old wants to be caring for their partner full time? i just felt very isolated and i suffered in my head, probably a lot more than i needed to.
looking back and knowing that there is so much support out there for me now, i wish i had accessed it sooner because i was really in a not a good place for a long time. i was just trying to figure out who i was as a person. i just started college and i had friends and i was just starting to understand what i wanted out of life. then my life was flipped upside down and put on pause, and everybody kept moving around me. there i was, in bed, watching everybody else achieving the things i wanted to achieve.
what is the treatment like for thyroid cancer?
my biopsy results were inconclusive for cancer but showed signs of cancer. i was diagnosed in july and had surgery three weeks later, but they only removed half of my thyroid because they wanted to make sure that it was cancer before they took everything. i had the surgery; it was deemed cancerous and six weeks later i had a second surgery.
the most common method of treating thyroid cancers is through what’s called radioactive iodine ablation. it’s a radioactive liquid, so they come at you all gowned up, with a mask on, holding it with these little forceps and then they say, “okay, drink this.” it was frightening. you don’t want to touch it with your gloved hands but you want me to throw this back like a shot of vodka (laughs).
the treatment itself was uneventful, there was a bit of a lead up to it. i had to go on a on a low iodine diet for three weeks and then i had to have some injections before the treatment itself. they were quite costly, which was unfortunate, but i guess in comparison to everything else that i’ve had in my life the [$6,000] i spent on injections is not obscene.
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the iodine ablation was relatively easy in the sense that it wasn’t very physically taxing in that moment, but i dealt with a lot of side effects after because my whole body was radioactive for five, six days at a level that was dangerous to other people. even up to a year after, i’ve carried traces of radiation. it affected a lot of parts of my body: my teeth started to have a lot of problems. i lost my sense of taste. my salivary glands froze, like they just couldn’t secrete saliva the way they’re supposed to, so then my mouth was dry, which caused more problems with my teeth. i lost my menstrual cycle throughout the whole ordeal and i lost my fertility because of it. i was dealing with urinary incontinence at 20 years old because i urinated out those radioactive liquids. i didn’t know what to expect, going into the treatment. and then i did it all over again a year later.
did the cancer come back or was the treatment not successful the first time?
the cancer came back. i was cancer free for about a year, and it came back pretty aggressively. six months after i went through the treatment i was clean, there was no evidence of cancer. but over the next six months the cancer basically spread all over, from my mouth down.
it was pretty scary. i had a left neck dissection, which means they opened me up from behind my ear and then they brought it down the front of my neck like a big j to the right side of my jaw. they removed as many lymph nodes as possible. of the 90-some odd lymph nodes they removed, there was cancer in 20 of them. i also had metastases to my muscle bands, so i had cancer on the sternocleidomastoid muscle and the cartilage of my windpipe. then i had another round of radioactive iodine and was cancer free again for another year. and then it came back again.
this most recent one was in 2018 and probably the most life threatening of them. not that i’m at risk of dying from the tumor, but the surgeries carried more risk. i did have another left neck dissection where they cleaned everything out again. this time, i had cancer in the tissue around my left vocal nerve, behind my left ear, and behind my sternum about three finger widths below the top of my breastbone in the mediastinum area. that’s the one we can’t get rid of – it’s still there. they did try to remove it, but because of the amount of trauma and scar tissue i had to that area, they didn’t want to start digging around behind my sternum without being able to tell what they were poking at. i appreciate that, but they had to put a pin in it and close me up unfinished.
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i do have more treatment in the future, but not until necessary. it doesn’t have any effect on my life right now. i don’t feel it. i don’t have any side effects from it. we know it’s there; we’re tracking it and it hasn’t changed in two years. but they decided that, obviously, the radioactive iodine is not very effective in my case because there are still cancerous cells that are not being killed off. so they will not give me another round of radioactive iodine, which is a little concerning because it limits my options. if the treatment that’s used to treat this cancer isn’t effective, then what’s next? but i’ll have a full sternotomy and then i’ll have external radiation to my neck and chest, which would be like your more typical beam radiation that you would think of with a cancer patient.
are you on any medication right now?
i don’t have a thyroid anymore, which means i don’t have the organ that controls my hormones, my metabolism, anything like that. i take a synthetic thyroid replacement and i take just enough of a dose that it takes care of the functioning all of those systems. i have to stay at a level where i am constantly hypothyroid because if my medication is raised to give me more of like a regular acting thyroid system, my tumor will be triggered.
brain fog and fatigue are the biggest symptoms that i struggle with. i am always tired. always. i gained 80 pounds, which was not my favorite. i can’t lose the weight; i’ve been trying for seven years. it doesn’t matter what i eat, how much exercise, i just can’t lose the weight. i started growing hair on my face, like on my cheeks and my chin. i stopped sweating, which was really nice, because before i got sick, i was always sweating, i was always warm.
throughout all of this, are you still working?
i am. i take it month by month; sometimes i did take time off throughout my treatment.
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before all this i was working in a totally different industry. i was working in childcare at an elementary school and i took a year off work for treatment. when i went back to work, my immune system was depleted. working with kids, it’s like this ball of germs. i was constantly sick and i had to decide that even though that this is a career that i really loved and it’s something i was really passionate about, i had put my health first.
so i left that job and i took the first full time job i could get and i’ve been there ever since. they’ve been really supportive of me and have been able to give me the time off that i needed over the years. it’s hard. i definitely have more needs than a normal 27 year old would, a lot more appointments. i also had to have some physical accommodations when i first went back to work and sometimes some cognitive accommodations, like, if i was struggling with the brain fog or the focusing and attention span because of my thyroid levels. they’ve been super supportive and they’ve allowed me to take the time i needed to recover and not rush back. my boss will drive me to my appointments if i don’t have a ride. the first time i relapsed, right before christmas, my company and all my coworkers got together and they gave me $2,500 cash to help me get through christmas. they’re really supportive.
what do you do for fun?
i actually feel like i have more hobbies through the pandemic than i had before. i lead a ridiculously busy life, so i’ve been able to refocus where my values are and reconnect with what i like to do. i can focus on things like quilting and painting and singing and things that i’ve loved to do but have never really given myself the time to do them.
i have a very close family. i can see my parents’ house from where i am, i can see my sister’s house from here. pre-pandemic, we would spend a lot of time together. i have a beautiful little nephew that i love to pieces. they live about six hours south of here, so i get to visit with them as often as i can. my husband skis on the canadian ski team, so we also travel a fair bit. i got to go to europe right before the pandemic and i get to travel within canada and visit the west coast an awful lot. so, i enjoy travelling. i do i enjoy skiing myself, but i’m not a very good steerer. i like to do it, but i’m not a coordinated person.
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i like to be outside. i like to even just walk out on hiking trails and just have as many experiences as possible while i can.
how do you deal with these huge swings? being diagnosed with cancer, then it’s in remission, then it comes back.
it’s gotten easier in some ways. the emotions are still very difficult, but my coping mechanisms have gotten better and i find a lot of support and a lot of value in the young adult cancer canada community. i fully mean it when i say that that community saved my life because, like i said earlier, i was not in a good spot when i was first going through my initial diagnosis. it took almost a year and a half before i connected to yacc the first time.
i didn’t see what the point of continuing on was. what was the point of my life if i was just going to continue to be sick? to go through this over and over and over again, constantly living in fear. when i connected to yacc, i was able to see that my life was not over just because i had a cancer diagnosis and that there was a lot more living to do.
in fact, i live more now that i have cancer than i ever did before. it’s hard. i’m not going to lie, it’s not an easy thing to do. it’s not something i would wish on anybody. but i also find that i live in contradiction a little bit in the sense that i hate cancer, but i’m very grateful for it. it has given me a lot in my life. it’s given me a lot of clarity and has shown me what my values are and allows me to live within my intention and just show people that i love them in whatever way i can, while i’m able to. i think that’s a really nice spot to be, it’s a place that not many people get to in their 20s.
i struggled for a long time and there came a point where i had to ask myself, what was the point of fighting for my life if i wasn’t willing to live it? i fought so hard; i want the most out of this. so, i just stopped saying no to things that i probably would have mentally held back from before. now i’m burning out a little bit so i have to start saying no, but when somebody asked me to travel somewhere i said yes. if they asked me to go go karting, i said yes. i just embraced my life for what it is, even if it’s not what i had envisioned for myself. there’s beauty in every story and in every experience, and mine is no different.
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do you volunteer with yacc?
i do. i’ve been a yacc activist, we did that in 2019. there were 14 or so yacc community members who were chosen across the country to represent the community. we did a week of training and then we were put back out into our respective communities to try and help bridge the gap for supportive care in the community. particularly where i am in northern ontario, there’s not a heck of a lot out there that’s relevant to people in my age demographic. i’ve been pushing hard with the support of yacc to bring awareness to that need and build a network of support communities up here.
i also lead a weekly web chat through the yacc web chat program, where we talk about the struggles and the celebrations of survivorship. that could be empowering yourself through your sexuality after cancer, or dealing with finances after cancer, or fear of recurrence, or finding joy again. we just get together online and talk it out for 90 minutes and learn from each other and hold space for each other. it’s a very rewarding spot to be.
i have a big family; we’re very close. but as supportive as my family was, i lacked the support that i needed from a peer. when i was first diagnosed, i lost all my friends. the college kids i was going to school with were not interested in sitting in the cancer center with me. it’s unfortunate, but it’s a really natural thing to happen. i held a lot of resentment towards them for that for a long time, but over the last year i’ve kind of reflected back to where i was before i was diagnosed and thought, if i were the friend of somebody who was diagnosed, did i have the emotional capacity to support them at 19 years old in the way that they needed? probably not. i’d like to think that i would have been more compassionate, but i don’t think i would have been.
it was the most amazing feeling in my life to attend a yacc conference for the first time in st. john’s, newfoundland in 2015. i flew out there having not been on an airplane for, like, 10 years. i didn’t know anybody. i went by myself and i got there and i was in a room for the first time with somebody else my age who had cancer. i had never met somebody else at that point and there were 110 people at this conference. it was just like i was home.
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i found that the community of yacc and other cancer communities, we’re all kind of on the same playing field as far as treatment wise and healthcare wise goes. it was just so empowering and inspiring to be surrounded by other people who’ve gone through what i’ve gone through and who understand it on a level far more than anybody else i’ve ever met. it’s really indescribable.
cancer isn’t a death sentence anymore. it doesn’t mean that you can’t live and it doesn’t mean you can’t be happy. just find support where you can because you don’t have to do this alone.
what it feels like is a regular series that explores the experience of being diagnosed, treated and living with a health challenge. have a story to tell? email info@healthing.ca.
emma jones is a multimedia editor with healthing. you can reach her at emjones@postmedia.com or on twitter @jonesyjourn
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