Thyroid Cancer Group: Introduce yourself and connect with others

Thank You

Live!
I was dx with a rare aggressive thyroid cancer more then 3o years ago , and when it spread the following year I was told my time was limited.
I'm still here and living a valuable and p r educative life. Yes I've had periods over the last years of health challenges but I raised my children and am now enjoying grandchildren!
Kepp it all in perspective. Don't worry too much. .make s point to do things you enjoy with people you b enjoy and live life each moment. Be present in your moments.
Take notes on your questions for your appointments, have someone go with you , to help remember key points of the appointment , or even take notes for you. Wishing you the best!!

Hi ! So glad your surgery went well and your recovery is going better now.
Be sure to write down your questions as they come up, so you have them with you for your appt. You'll be surprised how easy it is to forget something in a appointment like that. Take time for lots of rest as you recover. Prayers for a quick recovery

Hi My name is Jenny I was diagnoised with Papillary Thyroid Carcinoma in December 2023, On Jan2 2024 I had Thyroidectomy with 5 Lymph mode Neck dissection. 3 of the 5 Lymph nodes tested positive for the same Cancer. I have been recovery spent 3 days in the hospital because Calcium levels were low and been home since. Been doing good next step is Endocrinlologist.

Although hearing you have cancer can bring your mind to the worst case scenario, it is important to know that Thyroid cancer is usually contained to the thyroid and very treatable. Also, it is very important to state that FNA is not always accurate for predicting cancer…. False positives can cause a lot of unnecessary stress!
Did you get diagnosed post surgery? If so, they should be able to tell you if the cancer was contained in the thyroid or if it was also outside the thyroid. The treatment seems to vary greatly!!
If you have not had surgery yet, maybe you can ask for Affirma testing on your FNA because it has a high accuracy rate for PREDICTING cancer. Since I am not an advocate of removing organs “just in case it’s cancer,” I think going with the best predictor would be worth it. If you have a large goiter and the Affirma testing shows a low level of concern for cancer, you might qualify for Radio Frequency Ablation (RFA) where they shrink the nodule instead of taking out the thyroid gland.
It is important to mention, removing the thyroid gland will result in the need to take medicines that are not always easy to get regulated on (I am having difficulty with this), so in my opinion, surgery is the last option unless definitely necessary..
If you already had surgery…I read that Papillary cancer has the best odds of being self contained and people make a full recovery. If you need to take Synthroid, definitely keep a symptom list with your dosage….it is very easy to think the symptoms are from other causes but collectively they are usually associated with too high or too low of a dose of medication.
Good luck!

Hi everyone I have been diagnosed with Papillary Thyroid Carcinoma, and am very scared. What should I expect, dying or living? to be or not to be

It’s hard not to worry but “ don’t worry.” 😆
Definitely get a second opinion! Before you have surgery it’s always good to get a second opinion to try and rule out false positives. I was told that they can’t definitively diagnose cancer until they actually do the surgery, so a second opinion might help rule out a false positive.
There is also Affirma testing ( they send the material from the fine needle biopsy for Affirma testing) which has a high rate of accuracy for identifying probability of cancer, which might be a good option.
It is scary to hear you might have cancer but of all the cancers, this one is usually a very slow growing one so you don’t have to rush to make a decision and can get a second opinion.
I have found that the online group is helpful for information, so you don’t feel alone to make decisions.
Good luck!

Hi, I was diagnosed with papillary thyroid cancer last week, my doctor is hopeful that I'll only need a partial thyroidectomy, but there aren't any guarantees. I'm in my late 30s and I'm guessing that I've had this for awhile (the cancerous nodule is about 1.5 x 1 x 1.5 cm; I additionally have a benign nodule that's about three times the size of the cancerous one).

So far my doctor has been pretty up front about what surgery and treatment path I'm probably looking at, but no information on what my quality of life will be after treatment, or if there are any cancer support services available in my area.

I'm quite nervous and I feel like I'm having to take most of this journey alone. Should I get a second opinion before my surgery? How do I find support groups or patient advocates in my area? The brain fog is absolutely terrible, and being suddenly thrown into the cancer care system has been overwhelming.

While my doctors are sympathetic, I've also faced a lot of judgement from medical staff that don't know my diagnosis, I think because they don't believe that a middle aged professional woman could be sick with something like this, which has made it much harder.

Im Teanna, I had papillary cancer three years ago, and had my thyroid removed I did not do the radiation pill, and have been taking Thyroxine everyday since then. I do labs, and ultra sounds about every six months to monitor it, seems to be stable at this time.

Hi @dnedz Thanks for your reply! I am concerned about the possibility of having to undergo a second surgery -- I know its a risk. Taking the whole thing out presents more of a risk to two of the things I have devoted my life to, so keeping my fingers crossed that the right side will stay clear. So sorry you had to go through the second surgery. Wishing you well!