As young women, we are constantly reminded by our mothers, our doctors and even ads posted on the
stall doors in public washrooms to check our breasts for lumps, to be suspicious of moles on our bodies
and to track our menstrual cycles for irregularities. While each of these “checks” is important, what we
are not often advised to do is to check our necks for lumps or enlargements that may help in the early
detection of thyroid issues. This is especially important since, according to Thyroid Cancer Canada, 80%
of those with thyroid cancer are women, and thyroid cancer is now the #1 cancer in incidence in young
women. What is even more concerning is that due to the current shortage of doctors, many “healthy”
young people are being told that they do not need to have an annual physical, and that visits every 24 or
36 months are sufficient.
I, like the majority of other young women, was completely unaware of the importance of performing a
neck check. What I did know, however, was that seeing my doctor on an annual basis was important.
Fortunately for me, my family physician is incredibly thorough and performs a full neck check during each
annual physical. During my physical, in March 2013, my doctor noticed something that had not been
apparent during prior assessments – a significant enlargement of the left side of my neck.
Within a few weeks of this finding, I had an ultrasound, CT scan and my first visit to an otolaryngologist
(otherwise known as an ENT). While all of my blood work was within the normal range, the scans
showed a mass of approximately 7cm x 6cm x 4cm. My first visit to the ENT resulted in a biopsy
procedure known as a Fine Needle Aspiration (FNA), which confirmed that I had Papillary Thyroid
Carcinoma that had metastasized into the lymph nodes in my neck.
Most information about thyroid cancer will tell you it is a “good” cancer, in that the prognosis for survival
is very high. It is a disease that is slow-growing and which rarely extends beyond the thyroid. In cases
where it does, it is generally confined to the nearby lymph nodes in the neck. While these stats are
reassuring, I don’t think that anything can truly minimize the impact of hearing “You have CANCER” at
the age of 29.
Married for just a few years, ready to start a family, the conversations that this news sparked were topics
that my husband and I were not at all prepared for. While digesting this news together was hard
enough, sharing it with family and friends was a million times worse. Their looks of worry, sadness and
concern were at times unbearable. Yet, the love, prayers and support that we received were
overwhelming, and gave us the strength to remain positive and to face what challenges were ahead with
determination.
Just eight weeks after the initial discovery of this mass, I was laying on the operating room table at the
Ottawa General Hospital, preparing to have a total thyroidectomy and a lateral neck dissection to remove
the affected lymph nodes. I would have a scar that would extend from just right-of-centre of my neck,
all the way across and up behind my left ear. I would also be required to take a tiny pill each day for the
rest of my life to provide my body with the essential hormones typically produced by the thyroid. I was
terrified – saying “good-bye” to my husband and immediate family members before being wheeled into
the operating room was one of the most difficult things I have done. Not knowing what would be
different when I woke up was frightening. Would I be able to talk again? What would they find once
they opened me up? How would this impact the rest of my life? Was I going live?
Fortunately, my surgery was a success, and despite the large incision, I healed well and did not
experience any significant discomfort. In total, the doctors removed 40 lymph nodes on the left side of
my neck, in addition to other soft tissues and the full thyroid. I was in the hospital for four days to
recover, and unable to turn my neck fully for several weeks. The pathology report demonstrated that
both sides of my thyroid contained malignant tumors, and that 22 of the 40 lymph nodes removed from
my neck were also cancerous. While I was relieved to hear that I did not need chemotherapy, it was
alarming to learn that this approach is not used because it does not treat thyroid cancer as effectively as
it treats other forms of cancer. Due to the extensive spread of the disease, additional treatment was
required, and I was scheduled for a Radioactive Iodine Treatment (RAI) in the department of Nuclear
Medicine at The Ottawa Hospital.
While most people were enjoying summer BBQs in July, I was preparing to drink a dose of RAI that
would result in a period of isolation to protect those around me while my body processed the toxic
cocktail needed to kill any tissues not removed during surgery. To enhance the effectiveness of the
treatment, a low-iodine diet is required for almost three weeks. This involves the avoidance of all dairy,
soy, seafood, food with red colouring, whole eggs, or anything with added salt. Let me tell you, there is
added salt in EVERYTHING!
The other requirement to prepare for the treatment is to force your body into hypothyroidism, meaning a
state where your body does not have sufficient thyroid hormones. This involves either withdrawing from
thyroid replacement hormones for a period of 4-6 weeks, or being injected with a drug called Thyrogen
(which is not covered by OHIP). I prepared for this RAI treatment with Thyrogen injections that I
received each of the two days prior to the RAI dose.
Other than the unsettling feeling of drinking a toxic substance, my RAI treatment went well. The period
of strict isolation was long, but I filled the time and anxiously awaited my upcoming Whole Body Scan
(WBS). Unlike other forms of cancer, thyroid cancer is staged after treatment when the WBS is used to
show any radioactivity left in the body after the dose.
While I do not think that anything can ever adequately prepare you for the news that “You have
CANCER”, the ultimate shock for me came in hearing the news that, despite our best hopes and already
aggressive interventions, the cancerous thyroid tissues had moved through my upper chest and into both
of my lungs. Since I had had my entire thyroid removed and the RAI treatment to kill any remaining
tissues, my blood work ideally should have shown no presence of Thyroglobulin. Unfortunately, not only
did the scan show a significant spread of thyroid tissues in my body, but my Thyrogobulin levels were
quite high, confirming the extensive spread of the disease.
Up until this point, I had for the most part remained calm and ready to take on this “good” cancer. While
my positive and determined attitude did not change with this latest news, I was now shaken to my core.
I became terrified of all of the “what ifs”. To make matters worse, my body needed a chance to process
the recent dose of RAI, meaning that I would have to wait at least four months before beginning any
other form of treatment. It was at this point in time when I realized that the “good” cancer can
sometimes misbehave.
Four months seemed like an eternity! I honestly did not know how I would wait that long for the next
treatment, so I began to fill those months with researching and doing anything I could possibly think of
that could help my body to heal. While my hours of research allowed me to be well-informed about the
process to this point (mostly due to the great information provided at www.thyroidcancercanada.org),
there was very little information available regarding more advanced cases of this disease, especially for
someone so young. This increased my worry, as even my doctors could not say with certainty what my
prognosis was, or what long-term effects this disease might have on my body. While it is typically slowgrowing,
allowing patients to live long lives, I was told that I would likely have to get used to the idea of
“living with” thyroid cancer, since once it has spread into the lungs, it is generally not curable. I searched
endlessly for answers to what the next steps would be if the upcoming round of treatment was
ineffective, or what implications all of this would have on being able to one day begin a family.
I began having regular acupuncture treatments by a doctor of Traditional Chinese Medicine, I took part in
a nutrition program at the Maplesoft Centre (a cancer survivorship centre), and I joined the Ottawa
Integrative Cancer Centre (OICC), where I began seeing a Naturopatic Oncologist and a Nutritionist.
These practitioners, along with other alternative medical practitioners whose expertise I had relied on
long before my diagnosis (Naturopath, Chiropractor and Registered Massage Therapists), helped me to
believe that while we may not be able to cure cancer, we can most definitely support our bodies to fight
the disease and to minimize the negative impacts the various forms of treatment may have.
Time did eventually pass, and I was scheduled for a CT scan of my head, neck and chest. The scan
results gave hope, as the tissues that showed up after my treatment on the WBS were not visible on the
CT scan, indicating that they were too small to be detected. Given the unusual circumstances of my
case, my medical team of specialists consulted with others, both within Ottawa as well as outside of the
city, determining that another moderately high dose of RAI would hopefully work to possibly cure the
disease.
This time, however, I would not use the convenient Thyrogen injections to prepare. Rather, I would be
removed entirely from my thyroid hormones to achieve a state of hypothyroidism. I experienced several
of the symptoms associated with hypothyroidism, including muscle aches, feeling extremely cold, and
intense fatigue. As severe hypothyroidism is considered an impairment, I was unable to drive for four
weeks. Throughout this period, I once again adhered to a low-iodine diet. Despite my body’s weakened
state, my treatment went well, and due to the fatigue, the time in isolation passed quickly.
Fortunately, as the doctors hoped, this treatment was effective! In fact, it was more effective than they
had thought would be possible in the short-term, with the scan that followed showing that 99.0% of the
cancerous tissues that had been present just a few months earlier were no longer visible (with the
exception of a microscopic presence in one area of the lungs). This tissue was currently radioactive,
indicating that it had absorbed the treatment and would likely be gone on my follow-up scan in four
months. These positive results were further affirmed by my blood work that showed that my
Thyroglobulin levels had dropped from 337 to 0.5 pmol/L.
Assuming that my next scan is clear and my Thyroglobulin levels become undetectable, I might actually
be able to use the term “I beat cancer”, and my doctors will consider the disease to be cured. I am now
able to breathe a sigh of relief knowing that concerns related to fertility and long-term survival can
possibly fade away. A deepened level of self-awareness, my enhanced perspective on life, and better
appreciation for what is really important are just some of the valuable lessons that I have learned.
While most of the lessons learned will impact my life in a positive manner, I know that I have lost a sense
of naivety that I will likely never get back. Until we are faced with our own illness, I think many of us
believe that while bad things can happen, they won’t happen to us. I will never go into an annual
physical, a blood test or a scan assuming that everything is just fine, just because it had to be. I will
have a lifetime of follow-up appointments, blood work, dose adjustments and scans. Fortunately, I am
surrounded with a competent and compassionate medical team that give me confidence in their ability to
support my long-term health and well-being.
Despite some of the enduring worries, I will be forever grateful for the good that has come from this
experience, and I know that I am a better and stronger person going forward. The peace of knowing
that some of my most valuable relationships were strengthened rather than weakened through this
process is incredible. I am confident that this will allow me to be a better wife, daughter, sister, friend,
colleague, professional, and hopefully in the not-too-distant future, a better mother. One thing for sure
is that I will no longer limit my list of “checks” to breasts, moles and menstrual cycles, but will share
broadly the importance of performing a neck check. While thyroid cancer may be better than most, no
cancer is a “good” cancer, and if we can all do our part to share, perhaps thyroid issues can be identified
at the earliest possible stage.
Article written by Melissa Salvatore
Note – A special thank-you goes to the following medical supports: Dr. Lofaro, Dr. Odell, Dr. Raymond, Dr. Lochnan, Dr. Lander, Dr. McLeod, Dr. Stewart, Dr. Way,
Alexandra Gaw (RMT), Krista Dicks (RMT), Kylie Delfino (RHN), and the various support staff (including fabulous nurses) who assisted in this journey