Papillary Thyroid Carcinoma
As my first post, I would like to thank the creators of this site for providing a forum to ask questions and learn what to expect when we are diagnosed with cancer. I am a 50 year old male from Central Illinois. On November 8th, 2015, I lost my father due to colon cancer at the age of 80. At the funeral I notice a slight difficulty in breathing and chalked it up to the stress of dealing with my loss. However, after a couple more months of the feeling that someone constantly had their hands around my neck caused me to inform my primary doctor. Since I have a family history of high blood pressure and heart issues, he sent me to a cardiologist for a stress test on 2/29/16. The cardiologist almost immediately noticed a lump "goiter" in my neck and ordered an ultrasound. The ultrasound showed a 5cm mass and a biopsy was ordered. I was assured that most of these biopsy come back benine, however, it turned out to be papillary thyroid cancer and possibly has spread to a lymph node.
I have a CT scan scheduled on 3/16 and an ENT surgeon consult on 3/17. It is my understanding that the process will include: surgery & thyroid hormone medication followed by radioactive iodine to kill/suppress any cancer cells that remain after surgery. Not sure if there are any other options to get around full thyroid removal and permanent hormone medication. Also curious about what to expect after surgery. Some of my research suggests saliva gland issues, mouth sores, and teeth problems. What questions should I be asking my ENT surgeon and should I get an Endocrinologist to give an opinion on surgery before the operation.
Update 3/19/16. Thyroid removal surgery scheduled for 3/25/16.
Welcome to the forum but sorry to hear of your diagnosis. First let me extend condolences on the loss of your dear dad.
While I have no knowledge of your specific type of cancer, I do know from doing quick research, the prognosis with treatment is extremely good. We do not currently have any active members with your specific type at the moment but we all will keep you in our prayers and thoughts for a successful surgery and speedy recovery.
Surgeon removed full thyroid and 8 or 9 effected nodes. Cancer was contained to thyroid and did not spread to windpipe or para thyroid which was one our concerns. The surgery lasted about 3 1/2 hours and recovery was an additional 2 hours. When I woke up I realized that somehow my cornea was scratched during surgery. The initial eye pain was worse than any throat pain. The overall throat pain was less than expected, however, they installed a throat drain that maintains constant suction which was uncomfortable. Started with morphine then switched to Norco and stayed on top of pain. Most of the pain was from the incision and drain as opposed to a normal sore throat.
Originally Posted by dhe1652
The surgeon gave us an option to stay in the hospital a second night which we did because I was a bit concerned with my low blood pressure status. Probably as expected, there were periods of feeling very tired but it was notable. Before discharge, he removed the drain and bandaged the drain hole. We received prescriptions for pain and thyroid hormone and instructions for incision and drain hole care.
First evening at home and was still concerned of low blood pressure compared to my normal numbers. I took the thyroid pill and decided to wait until morning to restart BP pill. BP was up in the morning so back on BP meds. Getting the correct drug combo will probably be the next step. Not sure when or how we address cancer that spread in nodes. Stay tuned.
Update 4/12/16. Follow up with surgeon and endocrinologist last week. Endo explained that sometimes thyroid removal surgery can cause voice changes. I didn't realize at first but I have lost some of my higher voice range. Also notice a bit more effort required to speak. It seems like I need to push more air to speak. Hopefully these voice issues will improve as I fully recover from surgery.
Plan now is to wait 6 weeks for iodine from pre-surgery CT scan to clear out. Then low iodine diet and radioactive iodine to kill remaining thyroid cancer cells. Main concern now is side affects of radioactive pill- particularly potential damage to saliva glands and increased risk of other types of cancer.
First of all very sorry for the loss of your father. Hope fully you will feel better and I pray that voice comes back. I am also diagnosed with papillary carcinoma this Friday and my e.n.t is sending me to neck and shoulder dr for surgery .
Update 7/1/16. Since 4/12/16 I waited 6 weeks for the I odine from CT scan to clear then started the low iodine diet. After 2 weeks on the diet they ordered a 24 hr urin sample to test iodine. It took additional 10 days to get urin test results. Four weeks on low iodine diet sucks but finally cleared for radiation pill.
The two days before the pill I got injections to raise my thyroid levels. Day three they give you a pill that you can't touch from a lead lined container. Then they send you home for three days of full isolation followed by four days of limited isolation and tell you to return for full scan at day seven. They say the radioactive iodine takes 4-6 months to kill the remaining thyroid cells. A follow up scan may be required after 6 months.
It has been about 26 hrs since taking the radioactive iodine. Only side effects are slight headache and stomach ache. The stomach ache seems to be getting worse but no urge to puke yet.
Worst part of process has been dealing with healthcare providers and insurance company.
Update 1/2/17. My July scan showed cancer cells only in my neck which indicates cancer did not spread through the lymph nodes. I did gain some weight and started to feel extremely tired occasionally but after increasing the dose of the thyroid meds I feel normal.
Last month my endocrinologist told me she wants a follow up scan to double check everything since lymph nodes looked suspicious. That means low iodine diet again for two weeks followed by injections and low dose of radiation for scans to detect any thyroid cancer cells.
Sounds like you're on the mend! I was diagnosed in July 2002, had surgery in September 2002, and RIA in January 2003. I've had regular blood work and periodic ultrasounds for the last 14 years...last week they found a new growth in my neck (slightly larger than 0.5 cm, last ultrasound in January 2014 was clear)...biopsy tomorrow. Up until now, after clearing the RIA, life has been normal. I had a great surgeon back then.
Things have changed a ton in the last 14 years. My Endo says they will freeze one of the samples and if the other are not definitive for cancer, they will do a DNA test on the frozen sample to confirm. The good news is I will know, one way or the other.
Keep you chin up! As challenging as Thyca is, it remains highly treatable. I've been recently diagnosed with Prostate Cancer, so I'm living the dream!
1/16/14 psa 2.85
9/12/15 psa 5.18 (not sure I avoided certain activities prior to this reading)
11/19/15 psa 3.95
7/7/16 psa 4.41
9/20/16 psa 4.37 after course of CIPRO
10/10/16 12 core biopsy, 1 core positive (small portion) 3+3 gleason score
Elected active surveillance as I am otherwise in good health (psa every 90 days, fresh biopsy in 12 months)
2/4/17 psa 5.59 (I was very careful to avoid things that might cause a temporary spike)
3/4/17 psa 3.97