Pappilary Carcinoma

sunnyaz said:

Hi Nalita,

Julie-SunnyAZ again. The truth is that your life is never going to be the same again. I don't mean to be a downer, but this is what it is and it's time to start the process of accepting it. I am just now getting there after three surgeries an RAI treatment and another RAI coming up in the beginning of February. I go through periods of discontent and wish I could just give up and go to heaven but I have a teenage daughter to raise and family that would be very sad if I don't put up the fight. So I do, and I take every single day I can get as a blessing. I continue to work (in the Medical field) and try not to focus on my own issues. But, there are times I wish I could pinch myself and wake up from the horrible nightmare too. Before my dx is was a healthy 42 year old woman with a solid muscular structure and very athletic. Now, I am fifty pounds overweight and there are days it's very difficult to get out of bed, get my daughter to school and my butt down the road to work. I fight falling asleep on the freeway all thirty miles.

I hope that you have a support network. Maybe it's best to educate your family about this and let them read some of our posts. This is not a "good" cancer. Yes, it is treatable with a lower mortality rate, but it isn't any less serious than other cancers. I have said this in other posts and I will say it again, I know plenty of other cancer patients walking around without an organ, lung, kidney or whatever, and they don't have to take medication for the rest of their lives just to stay alive and sane. The Thyroid is a very important gland and without medication after it's removal, we will die. Your mental status will be different. Your blood pressure, your body temperature, heart rate and many other things are regulated by your Thyroid. It is a hormone secreting gland. This affects so many bodily functions.

Some words of advise. Ask your doctor to test your tissue for the B-RAF mutation gene before your Thyroidectomy (will be done in Pathology after removal). This mutation gene makes your cancer more aggressive and more difficult to treat but it's NOT a toe tag and you need to know if you are facing this in order to be more aggressive with initial treatment. About 40% of people have this mutation gene. Most people survive Papillary Thyroid cancer with the B-RAF mutation gene. It is just that you will need to be watched for recurrence for the rest of your life. After you are cancer free for ten years you can relax a bit, but will still need regular sonograms and blood work.

I am a B-RAF positive Papillary Thyroid patient with recurrent metastasis to the Lymph nodes. Some mistakes were made in my initial treatment and I hope to help others to understand more about this cancer in order to prevent them from having the same mistakes made in their care. Also, IF you should have metastasis after your Thyroidectomy, get a referral to an Oncologist. Most ENT's do not know the nature of cancer and are not qualified to do this kind of treatment. They (and General Surgeons) are great at the initial Thyroidectomy, after that you will need more specialized care. I was lucky to get in with an Endocrinologist/Oncologist/Surgeon in Tucson at the U of A Cancer Center. I don't mean to brag, but what a difference this is making in my prognosis. He works along with my regular Endocrinologist to help me get the best possible outcomes from each surgery and treatment.

My prayers are with you for your comfort and ease with your upcoming surgery and any and all treatments. Please keep us posted and don't hesitate to post questions or concerns.

God Bless,
Julie-SunnyAZ

sunnyaz said:

PS
I forgot to tell you that you will have to stay overnight in the hospital so that they can watch your calcium levels, but other than that the recovery time is mostly at home. I went back to school/work one and a half weeks after my Thyroidectomy.
Julie