Questions
PHOTO
Name (first name only, nickname, or alias)
Gender
City/Province/State/Country
Current Age
Thyroid Cancer/Condition
Age when diagnosed with Thyroid cancer/condition/Disease
Did you know much about your thyroid condition/disease before your diagnosis?
How did you discover your condition? (e.g., felt lump, was sick, doctor's visit)
Were there any clues about your thyroid cancer/condition before the diagnosis?
How did you first feel when you were first diagnosed?
How did your loved ones react when you told them?
How was your condition treated? (e.g., surgery, medication) Were there complications?
Do you take medication for this condition? If yes, which ones?
What side-effects did you experience from your treatments?
Do you use alternative medication/treatments? If yes, which ones? (e.g., homeopathics)
What helped you to cope with your thyroid cancer/disease/illness? (e.g., television, yoga, staying busy)
Did you join any support groups or get information from associations? If yes, which ones? How did you learn about them?
Do thyroid cancer/diseases run in your family?
How has your thyroid cancer/condition impacted/changed your life?
What was the most challenging thing about your thyroid condition/cancer?
What have you learned from your experience with your thyroid cancer/condition/disease that you can share/teach others?
What is the latest update on your illness now?
BLUE BUTTERFLY
Name Blue Butterfly
Gender Female
City/Province/State/Country Toronto, Ontario, Canada
Current Age 33
Thyroid Cancer/Condition Papillary Thyroid Carcinoma, Stage 1
Age when diagnosed with Thyroid cancer 33
Did you know much about your thyroid condition/disease before your diagnosis? Not at all. I vaguely knew that Rod Stewart had it.
How did you discover your condition? I went for my annual check-up with my family doctor. She found a nodule. So she sent me to do an ultrasound which revealed four nodules. Then I did a fine needle biopsy two months later. (Very painful with no anaesthetic.) They did three biopsies on two nodules. One nodule was malignant (cancerous), the other had abnormal cells.
Were there any clues about your thyroid cancer/condition before the diagnosis?Yes but I didn't know it at the time. I've always had issues with getting tired really quickly or easily. If I went out with my friends or fiance, I would be the first one "out like a light". Going out late was very challenging. The chronic tiredness was checked with bloodtests and attributed to low iron. Also over the last year, I have been feeling a slight tightness in my throat when I swallowed and also my voice deepening slightly and getting more raspy. I thought this was all attributed to stress. Now, after searching on the internet, I learned that these were symptoms for thyroid cancer. After my diagnosis, as I went through my engagement photos, I found a picture in which some lumps were visible in my neck.
How did you feel when you were first diagnosed? A mix of things. After I did my fine needle biopsy, I started to have this "feeling" that I might have cancer. Call it intuition or what but as I read on the internet, I realized that 20% of biopsies come back as cancerous. (Some even have to be repeated. I prayed I wasn't in that group.)First, surprised since I did a lot of preventative things healthwise (e.g., healthy eating, exercise), cancer was not on my radar. I didn't know anyone my age (personally in my circle) who had cancer. (Although there were people who I used to go to high school or university with who did have testicular, brain, and melanoma.) I felt scared to have surgery since I never had before and I could not envision it. Honestly, a small part of me felt relieved that I would be forced to take time off and rest from my already busy schedule. I also didn't feel comfortable using the word cancer until about late March this year. I called it different things like carcinoma or malignancy. The word cancer and all things related actually scared me.
How did your loved ones react when you told them? My closest family reacted pretty calmly (or maybe they didn't show their emotions too much) as they focused on the positive side. (Although, one sister cried when I told her.) My fiance was naturally concerned but we tried to focus on the positive. The impact became more apparent (and real) as time went on. I did not tell very many people about it at the beginning. (Although, my fiance and sister told their circle so it was weird that their coworkers and friends knew about it months before some of mine did.) Most people were surprised because of my age being so young. Others showed concern in different ways but also focused on the positives (my age, catching it early, the success of recovery rate, etc). One person said she cried for three days. (I hadn't even cried that long for myself.)
How was your condition treated? Were there complications? Through surgery, thyroid hormones, and radioactive iodine ablation (RAI, I-131). Also during my surgery, my 3 parathyroid glands were removed. The remaining one was reimplanted so I also had transient hypocalcemia (calcium deficiency) for two months but that's better now. Also out of the 6 lymph nodes that were removed during surgery, 2 showed cancer which meant I would have to do radiation. Also, a small piece of thymus gland was removed for testing since it was so enlarged.
Do you take medication for this condition? If yes, which ones?Yes. First, I was taking Cytomel, Rocaltrol, and Calcium Carbonate (very high dose). Then I came off the last two when the hypocalcemia stopped. Then I was completely off everything to prepare for RAI. (I went "hypo" since there was no Thyrogen available.) Then on the third day of my radiation, I began Cytomel and Eltroxin. Now, I'm only on Eltroxin.
What side-effects did you experience from your treatments? They ranged. After surgery: I sounded like a frog who really needed water. My croaky voice was also shaky but now sounds more like my normal voice although, my singing voice has changed. It's a little deeper and there are certain songs and pitches that are still difficult to reach. I am told that this too may improve with time. In the area of the incision, I had no pain at all and did not need to take one painkiller after surgery. This was caused by numbness in my neck which, according to my surgeon, is caused when the nerves are cut. It is quite common and it has taken a few months, but the feeling is almost back to normal. I also had a lot of neck stiffness and could barely turn my head but as the weeks went on, I gained more mobility in this area. There was also redness and swelling at the incision site but that has gone away. I am trying to reduce the risk of Meaty (my scar) developing into a keloid (raised scar common in Black people). I also had dizziness, and fatigue as my body readjusted to know thyroid and the new thyroid hormone replacement. Ongoing: Some irritability, depression, and thinner hair. I did not experience these until after though. The dizziness is gone. Also, I had these weird tingling sensations going on in my hands and legs for a while. When I was "hyper" (before my thyroid hormone dose was readjusted), I had hot flashes, heat intolerance (always feeling hot), heart palpitations (rapid heart beat) that wouldn't slow down, jitteriness, weight loss, shakiness, some anxiety, and insomnia (going to bed late, rising early). My appetite and taste were gone after the radiation. However, now my appetite is slowly coming back. My taste has pretty much returned and the metallic-taste lasted for a few days. Weight gain. Low energy level. Now: Some side effects have gone away and others have lessened. Nose sores. My voice is still coming back. My mood is up and down. Energy is gradually returning.
Do you use alternative medication/treatments? If yes, which ones? Yes. I have had two Therapeutic touch sessions and a couple of Reiki (I love it). I also go to counselling. I see a naturopathic doctor as well who has given me different prescriptions including vitamins, homeopathics, and other medicines to boost my immune system, reduce side effects, and promote energy. They gave me some creams and pills to improve healing of the scar. I have also used Vitamin E. Now I use Scar Therapy cream. I have done some yoga and I do mindfulness meditation.
What helped you to cope with your thyroid cancer/disease/illness? I think being mindful and respecting my healing process. Also, I found the wonderful circle of my fiance, family, relatives, friends, church members, and others to have helped me stay the course. I did do exercise at different points in my journey (as I was able). Reaching out to people and finally coming to terms with the term (pun intended) cancer. Some points I started to get really angry and frustrated about dealing with the health/insurance/government system and I was getting really upset so I felt I needed a vacation from this, to be in nature, and connect with others. So, drawing from the strength of other survivors, going to Wellspring (cancer support centre), and also to Newfoundland (nature thanks to Young Adult Cancer Canada), helped a lot. Being proactive (challenging the health system, insurance, etc.) when possible. It took a lot out of me energy-wise and frustrated me but I felt a whole lot better than doing nothing. Expressing myself through writing (journaling, blogging) and the arts (music, art). Using my voice. Praying. Staying positive. Listening to my body and pushing myself at times (e.g. to get out). People in my life who just out of the blue offered kind words.
Did you join any support groups or get information from associations? If yes, which ones? How did you learn about them? Yes. I did an internet search and learned about Thyroid Cancer Canada and joined ther online support group. I also learned about them through the internet and posters at Wellspring (cancer support centre). I go to Wellspring for yoga classes, workshops, and cooking classes. I am doing their Art Therapy, Writing for the Health of It, and the Healing Journey classes right now. I also attended Retreat Yourself which is organized by Young Adult Cancer Canada.
Do thyroid cancer/diseases run in your family? Yes. Hypothyroidism and goiter are in my family but no thyroid cancer.
How has your thyroid cancer/condition impacted/changed your life?Hugely and in positive ways. First, I changed my diet and became a vegan. I have begun to see more food as medicine. I am becoming a vegan chef and preparing the best foods to nourish my body. (And prevent future cancers such as bladder the chances of which are slightly increased because of the radiation.) This has led me to read more books about nutrition and healing and reach out into the community more. I get organic fruits and vegetables for a good price through the Good Food Box. Also, I am not afraid of the word cancer anymore and I have made connections with cancer survivors. We have all shared this journey and understand. I belong to this new community of cancer survivors. The lessons I have been learning through this journey and my desire to connect has led me to maintain my blog. Also, I do not take life and very importantly, myself for granted. All of my dreams and aspirations, my self-care are all very important. Plus, I see that every moment counts. People count. I also have become more mindful and speaking my mind more, not holding in so much. I will waste no time in pursuing my dreams and goals. I have so much to be thankful for. Also, prayer has been very important to me during this journey. I talk to God daily and I take peace in that. Lastly, I learned a lot about my own strength and resilience. I'm a "tough cookie".
What was the most challenging thing about your thyroid condition/cancer?
The surgery and side effects were tough but seem small when compared with these other atrocious challenges I faced. All of the bureaucracy, forms, letter writing, and phone calls. Especially what I had to go through with getting Thyrogen. My health insurance wouldn't cover it (it cost $ 2000) and took three weeks to let me know. (I appealed this decision with a formal letter.) I also applied for the Ontario Drug Benefit and was approved. By that time, the Thyrogen supply had run out in Canada. Then I tried to get a hold of it in the US and it was unavailable. I also could not put off my radiation any longer so I had to "go hypo" and do my radiation without Thyrogen. "Going hypo" had challenges in my case such as depression, weight gain, and not being permitted to drive which again were to be expected. Also, trying to get a second opinion about radiation was an ordeal. I went through four (4) endocrinologists' opinions and referrals. Also sick benefits from the government resulted in a 60% reduction in my income and 80% if you include the reduction in my summer pay. (I've appealed a decision and attended a hearing for the government to not pay me for March Break.) As a result, I have used most of my savings and my income tax return to tie me over. Plus, advocating for my right to have time to heal. The whole cancer journey has been exhausting. Through these struggles, it seems like there is this push to "patch you up" and send you back to work as quickly as possible whether you feel well or not.
What have you learned from your experience with your thyroid cancer/condition/disease that you can share/teach others?
Take your health in your own hands. Only you understand your suffering. Be your own health advocate or if your lucky, find someone who can be your health advocate. Be an exceptional patient. Take time to heal. Feel empowered to heal yourself physically, spiritually, and emotionally. Reach out to others because you don't need to go at this alone. I also did not realize how much of an impact this would have on others. Even if people do not call you or write you, it doesn't mean that they don't care. Also, express your feelings. No matter how crazy, angry, negative, or positive they are. They all matter. State your needs.
What is the latest update on your illness now?
My whole body scan results show that the cancer has not spread to other parts of my body. There is some activity in my neck which is normal to see after RAI. They don't know if it's cancerous or non-cancerous yet but there will be follow-up blood tests to check. There may be a small chance that I have to repeat the iodine but at a lower dose. Also there may be readjustments on my thyroid hormone dose. The prognosis is good since I'm in a low risk group. The researchers say that thyroid cancer has a 95% recovery rate with no recurrence.
Butterfly Tales
ERIN
This Butterfly Tale is from Erin in Meteghan River, Nova Scotia, Canada. This village is located on the very beautiful coast of the Clare Region on the Baie Sainte Marie. Erin chose to post her Butterfly Tale at helium.com. To read about her amazing Thyroid Cancer Journey, click here. Click here to read her profile.
JEN
Name: Jen
Gender: Female
City/Province/State/Country Calgary, Alberta, Canada
Current Age: 32
Thyroid Cancer/Condition: Papillary, Stage 2
Age when diagnosed with Thyroid cancer/condition/Disease: 19
Did you know much about your thyroid condition/disease before your diagnosis? No, being so young, I never thought about cancer.
How did you discover your condition?: Pre-op to have my wisdom teeth removed, the dr. was doing a locum for my GP and had just finished training with thyroid conditions. She found a lump.
Were there any clues about your thyroid cancer/condition before the diagnosis? In hindsight, yes. I was always tired, and didnt feel well.
How did you first feel when you were first diagnosed? Scared and sad.
How did your loved ones react when you told them? My parents were there with me when I received the diagnosis - they cried but then tried to be strong for me.
How was your condition treated? Were there complications? Surgery, there were complications - hypocalcemia, which was pretty severe. Also radiation - because I had to have so much there was salivary gland damage.
Do you take medication for this condition? If yes, which ones? Synthroid, calcium, vitamin D.
What side-effects did you experience from your treatments? Salivary gland damage was the only long term side effect, but the radioiodine treatments are no fun - short term side effects are general malaise and nausea. I also had hypocalcemia post-operatively. This eventually corrected itself.
Do you use alternative medication/treatments? If yes, which ones?: a lot of vitamins to stay healthy (folic acid, cod liver oil, lots of vitamin D and others) and I used vitamin E topical cream to heal the scar.
What helped you to cope with your thyroid cancer/disease/illness? Staying busy! I was working at the time and attending university, and I had a great group of friends. Staying focused and busy and supported by family and friends helped me through those difficult times.
Did you join any support groups or get information from associations? If yes, which ones? How did you learn about them? Not then, but now I am a member of Thyroid Cancer Canada.
Do thyroid cancer/diseases run in your family? No.
How has your thyroid cancer/condition impacted/changed your life? This is a big question! My life is totally different than before. Thyroid cancer comes with life long follow up. Now that I am a mother, I am so scared that I may not be there for my girl as she grows up. I need to have health care support lined up before I move anywhere, which as a young person with school and starting a career, has been a few times.
What was the most challenging thing about your thyroid condition/cancer? Hands down the most challenging thing has been navigating the medical system. I have fallen through the cracks, yelled, cried, you name it. Luckily now I seem to have a good dr. and have learned that I must be responsible for my own care. When testing was necessary pre-thyrogen (and I may face this now with the shortage), going hypothyroid affected every aspect of my life. Because I "looked okay" and didn't "look like I had cancer" I felt as though people thought I should work harder, have more energy. I found this difficult.
What have you learned from your experience with your thyroid cancer/condition/disease that you can share/teach others? Be in charge of your own health care, educate yourself. Be a strong advocate for yourself. Be assertive. Stay healthy and happy - its the best thing for your health.
What is the latest update on your illness now? With thyroid cancer, unlike other cancers, the 10 year mark after the last successful treatment marks the beginning of "remission". For me, that could be this summer.
GINA
Name Gina
Gender F
Current Age 38
Age when diagnosed with Thyroid cancer/condition/Disease 15
Did you know much about your thyroid condition/disease before your diagnosis? no
How did you discover your condition? felt lump in my throat
Were there any clues about your thyroid cancer/condition before the diagnosis? no
How did you first feel when you were first diagnosed? My lump was not cancerous however I was not happy that my parents and doctor made the decision to have my thyroid removed while I was under without consulting me . I understood why they made that decision but I felt left out of the decision making in regards to my own body. Sometimes I feel it would have been best to leave mt thyroid in as there was nothing wrong with the functioning,
How did your loved ones react when you told them? How was your condition treated? (e.g., surgery , medication) Were there complications? I had a thyroidectomy and 0 complications.
Do you take medication for this condition? If yes, which ones? Synthroid
What side-effects did you experience from your treatments? nausea from the general anesthetic
Do you use alternative medication/treatments? If yes, which ones? no
What helped you to cope with your thyroid cancer/disease/illness? I the biopsy of the lump was shown to be non cancerous. I was very young and resilient and the thyroidectomy did not have a huge effect on me. I sometimes wish I did not have to take the daily thyroid hormone supplement.
Did you join any support groups or get information from associations? no
If yes, which ones? How did you learn about them? Do thyroid cancer/diseases run in your family? no
How has your thyroid cancer/condition impacted/changed your life? It's made me more conscious about my health and body.
What have you learned from your experience with your thyroid cancer/condition/disease that you can share/teach others? Make sure to get your tsh levels checked every 6 months to a year. I've also noticed when my dosage was off, I experienced negative or depressive thoughts. Also, my tsh levels had to be monitored closely as my synthroid dosage changed significantly during pregnancy. Be in tune with how your feel and signs of hypo or hyper symptoms as this means your dosage could need to be changed.
To read other Butterfly Tales (Profiles) about survivors of thyroid cancer, visit the Young Adult Cancer Canada (YACC) website to read the profiles about thyroid cancer.
To read other blogs by survivors of thyroid cancer visit the Thyroid Cancer Canada site.
