Grace Wright Eagan
Grace, Shalima, Nina, Katie ("Too Young For This: Young Women and Thyroid Cancer")
From the age of 15 or 16, Grace noticed she was having trouble keeping up physically with her peers and had started having unusual food sensitivities; by the time she was diagnosed (at age 19) with stage II papillary carcinoma, the oncologists determined that her tumour had been growing for approximately three years.
18-year-old Shalima never noticed anything wrong with her thyroid gland. She had none of the symptoms typically associated with thyroid issues and after her annual physicals, her bloodwork always came back normal. It wasn’t until her mother pointed out the prominent lump on her daughter’s neck when she swallowed, that Shalima thought something might be wrong. She was eventually diagnosed with stage II papillary cancer.
The diagnosis of cancer of any kind in a young person is difficult for everyone involved; the doctor, who all too often believes what he or she was taught to think in medical school, that “cancer only happens to older people”; the individual diagnosed and their family who are often conditioned to believe the same thing, and that young people just don’t get cancer.
This myth, and the subsequent diagnosis of thyroid cancer often results in confusing emotional reactions from the families and friends of the patient. Katie’s experience is not at all unusual. Post-diagnosis at age 27, “Everyone had mixed reactions and A LOT of questions. While my family stuck by me, a few friends stopped talking to me and avoided me at all costs. After my thyroidectectomy and one round of RAI, some of my family thought I should have been back to “normal” right away”. Grace describes “…friends who showed up right after surgery, and others who just pulled away…some family members who were stoic and expected me to be equally stoic and unreactive…and when the “I-Have-Cancer “ anger started to show up, (people’s) patience started wearing thin”.
While Nina (who was diagnosed at the age of 40) relates that she had tremendous support from her husband, friends and most of her immediate family, one of her sisters, to whom she was extremely close, seemed to shut down: “Her way of reacting was to ignore my diagnosis and even avoid me, which was very upsetting. When I told her I was hurt and disappointed that she had retreated from me between the time of my biopsy and surgery, she broke down in tears and admitted she could not face the “C” word being in our lives again, since we had lost our mother to breast cancer only four years before”.
Clearly, young women diagnosed with thyroid cancer also face huge challenges on several fronts -- entering adult society, joining the work force, contemplating relationships and the possibility of marriage, starting a family – all of which can be overwhelming even without the looming spectre of disease. These younger women are also likely to be stigmatized, since fewer of their peers have had a personal experience with cancer.
As Shalima conveys: “It’s very different for young people with cancer because it’s hard to believe they face a life threatening illness when their “life” hasn’t even started yet. It’s difficult to concentrate on things like university and building a career while visiting doctors and constantly worrying about being healthy. We also face different kinds of social pressures, like not being able to hang out with friends or being able to talk to anyone about what (we’re) going through”.
“A worm-hole to another stage of life and maturity” is how Grace explains the emotional reaction to her diagnosis of thyroid cancer. She goes on to say that “it’s a bit like being ripped out of teenage life… put through a ringer-washing machine of experiences where my companions were a generation older than I was, then spit back out and expected to re-join my young adult life. And when she did re-join that “life”, “…I felt somehow behind my age group because of the time that I had lost while I was busy not dying and getting used to my new “normal”; it was this strange feeling of being behind (my peers) because I had been catapulted ahead (into the future) and then shot back again”.
We know that thyroid cancer is the most prevalent form of cancer in young women under 30, accounting for almost 25% of all cancers or 700 new cases a year. In the 30-49 age group thyroid cancer claims 14% of all cases, or 3,373 new cases a year. This pattern differs from that of many common cancers, such as colorectal cancer, which tends to be more common in men and increases at ages over 50. And so, this begs the question: why is there not more support and information forthcoming from the medical system regarding thyroid cancer, given its’ increase in diagnosis?
Perhaps it has something to do with societal attitudes that thyroid cancer is a “good” cancer to get. While there is no such thing as a “good” cancer, the cure rate for thyroid cancer is as high as 96% or more with early detection and a wider range of treatment options. But being a young person and trying to convince one’s doctor that there is indeed something wrong, is yet another reason thyroid patients feel adrift in the medical environment.
Grace argues that being 19 years old does make her an expert on her own body, and knew something wasn’t right: “It shouldn’t be up to the patient to prove to a doctor (that their illness) is “for real”…they may not have the energy to prove it; it took 8 doctors before someone believed that there was something going on that (should be taken) seriously”.
The amount of time it takes to schedule tests and biopsies is a concern to Shalima: “Sometimes it takes months before you know if you have cancer, and in that time your whole life is put on hold…I think if people found out sooner rather than later that they had cancer, it would eliminate a lot of stress, time wasted worrying and allow everyone to move on in their lives more quickly”.
Some of Katie’s frustration stemmed from the fact that all of the pamphlets the doctor gave her were geared for people over the age of 45. As a result, she sourced the internet: “I had a lot of trouble finding information or resources for issues that an 18-35 year age group would have, such as how to explain this to young children, working while sick, dealing with relationships. And there were no support groups for young people with thyroid cancer. I asked my doctor if she knew of another thyroid cancer patient under 30 that I could speak with. She had no information and wasn’t very supportive about my concerns”.
The struggles faced by young women diagnosed with thyroid cancer are myriad: lack of age-appropriate information about the illness; appointments with (sometimes) less-than sympathetic doctors, and a medical establishment that all too often seems to view this type of cancer as less serious than others. This attitude often carries over with friends and family, too. During my research for this article, the one constant refrain that I heard from many people was the frustration they felt when they heard: “Oh, but that’s the cancer that won’t kill you, so it’s the good one to get”. That being said, patients of all ages continue to wonder what causes thyroid disease. And hopefully, they’re not alone: new data and studies are prompting researchers to investigate why thyroid cancer is increasing at a faster rate in young people than any other cancer.