Thyroid Cancer – If you are diagnosed
If You are Diagnosed with Thyroid Cancer
Receiving a cancer diagnosis can be shocking and worrisome. Many people know little about thyroid cancer when they are first diagnosed despite the fact that thyroid cancer is now the #1 cancer among young people in Canada (diagnosed more than any other form of cancer in persons 15-29 years old). Feeling frightened and overwhelmed is not unusual, especially immediately after diagnosis.
See your doctor if you have these signs or symptoms:
- a lump or swelling in the neck
- hoarseness or other voice changes
- difficulty swallowing or a sore throat that doesn’t go away
- difficulty breathing
- pain in the front of the neck
- a cough that doesn’t go away
Thyroid Cancer Canada recommends that new patients do the following:
- Be sure you are diagnosed and treated by expert specialists. Your family doctor or provincial medical association are good sources of referral to a surgeon and endocrinologist. Often the surgeon you are referred to will have a specialty in “Ear, Nose & Throat” (ENT) which is also known as otolaryngology. Alternatively, if seeing a general surgeon, be sure that the physician is very experienced with thyroid surgeries as this type of surgery has unique variables that may come into play.
- Get information. With this website, TCC will strive to answer all of your preliminary questions; however, every individual patient’s situation is different and we may not have all the answers you seek. TCC also provides a telephone helpline, email information and printed matter by mail.
- Get support. TCC provides support by telephone, email, and on our patients’ Online Forum. The Online Forum is a peer-moderated community of hundreds of thyroid cancer patients (mainly Canadian). Many of them are newly diagnosed or in the beginning stages of their thyroid cancer journey. Members of the TCC Online Forum can read messages as they are posted, read previous ones in the archives, and participate actively by posting questions and concerns if they so choose. The moderators of the TCC Online Forum do not offer medical advice nor will they provide specific referral recommendations or critiques of any medical practitioners. TCC makes use of its Medical Advisory Panel members, should any posting require expert medical response. Join the TCC Online Forum.
- Every time you have a test or procedure ask for a copy of the report and keep them organized in a file. It is your right to have copies and you may need them in the future if you change doctors. Reading the reports helps you learn about your type of thyroid cancer and that education can be very empowering. The reports may include: your cytology report from your initial FNA; all ultrasounds; surgical report; pathology report, Whole Body Scan (WBS follows RAI treatment if necessary), CTs, etc. Also, it is a good idea to keep a list of your thyroid hormone dose by date, and the corresponding TSH test results (optional: use a chart or graph).
What questions can I ask my doctor?
- What type of thyroid cancer do I have?
- How extensive and/or aggressive was it? (ie. Was it encapsulated? Did it spread to lymph nodes? How many lymph nodes were removed during the surgery (if any), and how many of those were cancerous? How many thyroid tumours did I have in total and what size were they?)
- What "stage" is my cancer?
- Were any of my parathyroids removed or replanted during my surgery? (If they were removed or damaged, what course of treatment will I have?)
- Will I require RAI treatment? If so, what dose? When? Will I be withdrawn from meds, or use Thyrogen? Will I be an out-patient or in-patient in the days following the treatment?
- Will I require any other type of treatment?
- What follow-up will I have in the years to come? What routine will I have and on what schedule (eg. periodic ultrasounds? stimulated Tg testing?)
- What are you targeting my range of TSH to be at? What dose of hormone will I take to try to achieve that range? How often will I have a blood test to assess my levels?
- How often will I see you? How can I reach you if I don't feel well or if I have questions? Should I leave a phone message, fax or email?
TIP: All patients have the right to ask for copies of their pathology results, surgical report, U/S and other scan results, etc. It is a good idea to keep a file of your own medical reports related to your thyroid cancer surgery and treatment. Some treatment centres/hospitals or private labs, now provide online access to reports. Ask your doctor if your hospital provides this service, so that you can easily download copies of your medical reports. Reading the reports increases your knowledge (which many patients find empowering and reassuring). It is also convenient to have copies in case you ever change treating doctors in the future.