January 27, 2018

Thyroid Cancer


Here’s a free collection of resources about Thyroid Cancer.

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Thyroid Cancer Survey

We’re surveying people about their experiences with Thyroid Cancer. Here will be a collection of their responses.

*This information is not meant to replace medical advice, and the information gathered via surveys may or may not be correct. Hopefully it will be helpful to you!

*Response format = Answer (Name, Age)


**Click here to share your experience with Thyroid Cancer**


Thyroid Cancer Symptoms

What symptoms have you experienced?

  • I have fatigue and chronic migraines. (Deyna, 28 years old)
  • Migraines, muscle pain, joint pain, fatigue, cold intolerance, and weight control issues. (Debra, 41 years old)
  • Tired, weight gain, fibromyalgia, blood pressure issues, cholesterol issues, b12 deficiency, etc. (Betty, 44 years old)
  • None really. Tired mostly, and sweaty all the time. I wear tank tops and my hair is in a bun ALWAYS. (Milinda, 52 years old)
  • Swollen lymph nodes. (Sherri, 54 years old)
  • Omg, what hasn’t been exacerbated by not having a thyroid!?! Fibroids went crazy- hysterectomy. Gallbladder removed. Arthritis is painful. Muscle loss even with exercise. Funky sleep, brain fog, weight gain, EXHAUSTION. (Lisa, 55 years old)
  • None just accidentally found a lump in my neck. (Susan, 72 years old)

Thyroid Cancer Causes

Is there anything you believe contributed to or caused your Thyroid Cancer?

  • Family history. (Betty, 44 years old)
  • They told me it’s very common, they said 80% have and don’t know it. (Milinda, 52 years old)
  • Not that I know of. (Sherri, 54 years old)
  • My endocrinologist thinks X-rays as a child, I had two holes in my heart, so many chest X-rays. (Michelle, 55 years old)
  • Genes, lots of thyroid cancer and thyroid disease on father’s side. (Lisa, 55 years old)
  • CAT scan for sinuses. (Susan, 72 years old)

Thyroid Cancer Facts

What are some interesting facts about Thyroid Cancer?

  • There are so little info and support. (Debra, 41 years old)
  • Other issues that are tied to it, that go hand in hand. (Betty, 44 years old)
  • For me, it’s scary because it will metastasize which mine did in 1 lymph node. It’s the “good cancer.” (Milinda, 52 years old)
  • It was fast growing. (Sherri, 54 years old)
  • Found early thank goodness. (Michelle, 55 years old)
  • It is SLOW growing and can hide for decades. (Lisa, 55 years old)
  • It is awful. It is shocking that it is increasing.

Thyroid Cancer Pain Management

What’s your experience with Thyroid Cancer-related pain and pain relief?

  • I feel constant pain every day. (Deyna, 28 years old)
  • I was diagnosed with fibromyalgia, arthritis and an unknown inflammatory disorder prior to diagnosis. My pain level is getting better after TT. (Debra, 41 years old)
  • Moderate. (Betty, 44 years old)
  • I have no pain. (Milinda, 52 years old)
  • Didn’t really have any pain. (Sherri, 54 years old)
  • Very minimal pain. (Michelle, 55 years old)
  • My Osteoarthritis has increased quickly. Have to keep moving to combat pain. (Lisa, 55 years old)
  • No pain. (Susan, 72 years old)

Thyroid Cancer Difficulties

What are the hardest aspects of living with Thyroid Cancer?

  • Being fatigued all the time. No motivation. (Deyna, 28 years old)
  • Scared of more coming. (Amanda, 32 years old)
  • Still tired, cold, can’t lose weight and my hair is falling out. (Debra, 41 years old)
  • The fear of it coming back, going back thru treatment. (Betty, 44 years old)
  • Every time you get cramps in your hands or feet and tingling in your lips, you have to check to make sure your calcium is not too low. I have been to the ER 6 times since Sept. 2017 for it but thankfully it was good. (Milinda, 52 years old)
  • The hardest is the prep for 131 uptakes and being off the medicine, the side effects. (Sherri, 54 years old)
  • Living without a thyroid is awful! (Michelle, 55 years old)
  • Everything changes. (Lisa, 55 years old)
  • Having cancer is terrifying. My GP and surgeon are great but the endocrinologist is horrible. (Susan, 72 years old)

Thyroid Cancer Advice

What encouragement/advice can you give others who experience Thyroid Cancer?

  • At least there’s a high cure rate. (Deyna, 28 years old)
  • Stay strong. (Amanda, 34 years old)
  • There is life after cancer. Stay positive. It may be scary but a positive attitude goes a long way. (Debra, 41 years old)
  • Never give up. (Betty, 44 years old)
  • Stay strong. (Milinda, 52 years old)
  • Look to whatever helps you and that makes you feel stronger. (Sherri, 54 years old)
  • Educate yourself and self-advocate with your medical team. (Lisa, 55 years old)
  • Get a good surgeon and read everything you can. Don’t get pushed around by the endocrinologist. (Susan, 72 years old)

Thyroid Cancer Diet and Exercise

What’s been your experience with diet and exercise?

  • It’s been difficult. (Deyna, 28 years old)
  • No matter how good I eat the weight doesn’t go anywhere. I exercise but I get tired easy. (Debra, 41 years old)
  • Too tired for exercise, diet not an issue. (Betty, 44 years old)
  • I have been wanting salty things more than ever. (Milinda, 52 years old)
  • Too tired to exercise. (Michelle, 55 years old)
  • It does not matter for weight, but eating healthy will help you feel better. (Lisa, 55 years old)
  • Endocrinologist won’t support diet but I try to eat anti-cancer foods and I always exercise. (Susan, 72 years old)

Thyroid Cancer Treatments

What’s been your experience with treatments (medication, surgery, etc.)?

  • I’ve had a total thyroidectomy. (Deyna, 28 years old)
  • I had 2 surgeries. RAI at 2 months post surgery and a small dose at 1 year. (Debra, 41 years old)
  • I was told after surgery that within three weeks of starting meds, you will never know anything happened. The BIGGEST lie I have ever been told. (Betty, 44 years old)
  • Surgery was ok, no pain, the scar is almost gone. It was in Sept. 2017. Medicines stink, I take 14 pills a day. (Milinda, 52 years old)
  • It took me forever to get regulated on my thyroid levels and like I said before the 131 radiation really makes me sick. (Sherri, 54 years old)
  • Levothyroxine I had first and it was an awful year, then I switched to Synthroid name brand and felt better. (Michelle, 55 years old)
  • Well, at least I am alive. Medication dosage changes every few months. The RAI increases my chances of another cancer. Anytime you are sick, the “cancer” question enters your thoughts. (Lisa, 55 years old)
  • Surgeon great, endocrinologist terrible. Forgot about me and my thyroxine became too high. Nearly killed me. Rescued by my GP. Endocrinologist tried to bully me into radioactive iodine, but wouldn’t provide isolation for me. Got rude and angry, said it was safe, no side effects, but had no data to back up her recommendation. (Susan, 72 years old)

Thyroid Cancer Recommendations

Anything you’d recommend for someone with Thyroid Cancer?

  • Rest plenty. (Deyna, 28 years old)
  • Do your research, know your options, do all you can to make sure you come out at the other end healthy. (Debra, 41 years old)
  • Research, research. Educate yourself and don’t feel ashamed for a second opinion. Ask questions. Challenge the doctor if need be. (Betty, 44 years old)
  • Get as much information before you decide in surgery and RIA. (Milinda, 52 years old)
  • Find something that inspires you and hold on to that. (Sherri, 54 years old)
  • Find a good endocrinologist—that isn’t easy! (Michelle, 55 years old)
  • Educate yourself and self-advocate with your medical team. (Lisa, 55 years old)
  • Don’t get pushed around. Ask for data. (Susan, 72 years old)

Thyroid Cancer Resources

What specific resources have you found most helpful?

  • Ice on my neck. (Deyna, 28 years old)
  • Facebook groups and a good friend who has had thyroid disease. (Debra, 41 years old)
  • Thyroid groups. (Betty, 44 years old)
  • My faith. (Sherri, 54 years old)
  • Facebook pages. (Michelle, 55 years old)
  • Thyca. (Lisa, 55 years old)
  • Inspiring websites on the internet. Book “Foods that fight cancer.” The Cancer Society has been great. Somewhere to go to have a cry, let off steam. (Susan, 72 years old)

Thyroid Cancer Stories

Share an experience you’ve had related to living with Thyroid Cancer.

  • I am the only person I know who had papillary carcinoma. (Deyna, 28 years old)
  • The what ifs. (Betty, 44 years old)
  • I really don’t think about it unless I am going through the 131 radiation. (Sherri, 54 years old)
  • The thyroxine dosage must be right. Persist until it is. (Susan, 72 years old)