my new diagnosis

[ma1010ja]

I am new to message boards and interacting with others via computer. I was diagnosed yeserday after surgery last week that tok half my thyroid. Now I go back on friday to have it all removed. I am so sad. Does anyone know how long my recuperation will be and how much this is going to hurt?

[Kimemitch]

I had my total thyroid removed back in 94 - I was so surprized that I had no pain at all. I would have needle prick sensations down the road as the nerves came back - someone said that the nerves are severed during surgery so there's no pain - not sure if thats true, but it makes since to me and I really had no pain. Just try to take it easy, take walks, reduce stress as much as you can and hang in there. Just keep researching and it will help take the scariness away. Good Luck

[Kimemitch]

I hiit send to quick - the biggest problem a lot of people have is getting the thyroid regulated afterwards. I highly encourage you to start from the beginning getting and maintaining copies of your lab work. Educate yourself on the numbers and then you are armed with ammo if you have any problems. Hopefully you will adjust easily, but if not you will be ready to be proactive in getting help. Good luck.

[pamokc]

I have a very similar story. Had 1/2 thyroid out in September; they found the cancer; then had the other 1/2 out the next day. Am still having trouble getting the meds right. Do some research on various meds besides the Synthroid. I am going to try to get on the Armour thyroid but I understand it is hard to get prescribed for you. Read up and be your own best advocate. And be sure to let the doctors know you want your symptoms treated and not your lab numbers treated.

[russkenzie]

I got my thyroid out in one go .Suprisingly not that sore im a bricklayer and back at work after 4 weeks just took it slightly easier .Only feeling unwell now off my meds for 2 weeks for radio-iodine nothing major headaches tiredness

[Kimemitch]

I consider myself lucky after hearing these stories. When I was diagnosed, 2 different surgeons only wanted to take 1/2 my thyroid (One was the Mayo Clinic). The surgeon I settled on - said look - this type of cancer is known to spread and its just safer and less trauma to take it all. He was right - it had spread and after hearing your complications and having to do it twice - I guess I made at least one correct choice. Good luck to you both.

[Fiddles]

I too had 1/2 my thyroid out and the biospy came back cancerous. I am going in on May 1st to have a total thyroidectomy. The length of stay at hospital will depend on how well I am doing. How long did you stay in the hopsital? How are you feeling now? When I found out that I had cancer I planned a Party lite Party to keep me busy. Fiddles;)

[hrdolly]

Hello there ma1010ja, please try not to worry, I know it's a scary thing you're going through and I hope my story will help. My son was diagnosed with thyroid cancer in 1999 when he was 17. He had the same operation you refer to then had to have further surgery to remove the whole thyroid. The operation is no worse than any other. At first you won't be able to hold your head up properly because of the surgery but this soon gets better. The scar fades very quickly and looks just like a very faint line. You will then probably have Radioactive Iodine treatment which means being in isolation for a week or so. This just catches any remaining dodgy cells the surgery didn't quite catch. You'll feel a bit lethargic after this and might even put some weight on but once you start taking the Thyroxin all this will go away. You might have to have further RI treatments during which you have to stop taking the Thyroxin and the above symptons will return but they do disappear once you start taking Thyroxin again. Unfortunately my son had to have further surgery as the RI treatment didn't get rid of everything but he is absolutely fine now. He's recovered, takes the Thyroxin, and leads an absolutely normal life. He now has a son of his own, just 6 weeks old, and gets married in August. I hope my story helps you. I wish you the very best of luck, and a speedy recovery. Let us know how you do. Kind Regards.

[Fiddles]

Thank-you for the information. Congratulations on becoming a Grandma! I guess its the Cancer word that gets people worried. I am most worried about if it spread to other parts of my body but I understand with thyroid cancer that doesn't happen too often. Do you remenber how long your son was in the hospital? Thanks, Fiddles

[kalogan912]

I am also a new patient, just had left thyroid out week and a half after right thyroid nodule removed and tests showed papillary carcenoma . (FNB on nodule showed no cancer but Hashimoto's). Waiting to see what comes next with the pill and not knowing the affects of no thyroid.

[Fiddles]

Hello, I had my middle (bridge) thyroid out and it showed cancer so I am waiting to have the whole thing removed. My new scheduled date is May 22nd, my last one was cancelled because of no bed in the hospital. From what I understand you will just have to take medication for the rest of your life. Sometimes it is hard to get it at the right doses and you have to become really in tune with your body paying close attention to how you are feeling so you can let the doctor know. I have also heard that we should be writting down the numbers of our thyroid tests. Trying to learn more about that. Anyone with more infor on that it would be appreciated. Thanks, Fiddles

[molly]

I hope you are doing well. 20 years ago I had Adenoma and left lobe and isthmus removed. Next week I go in for FNA for a nodule with calcium deposits in right lobe, which my endo says is not good. I spoke with my head and neck surgeon who agrees that either way, the lobe comes out. I am hearing of many false negatives on FNA's then the cancer spreads. My humble advice to those new patients who are seeking some solace...educate yourself. Fear is made worse by lack of knowledge. Fear makes the pain worse. Ask questions of your doctor, but don't rely on the doctor to pat you on the shoulder and tell you everything will be ok. You will not appreciate that behavior in the long run. There is a lot of information on the internet about your disease. Some of it is not so good, but weigh your information using your logic and what feels right for you. Above all, do not lose your sense of humor. Be flexible, be strong. You are not alone. ;)

[ma1010ja]

Hi I had a very similar situation to yours with2 surgeries.Is that what you had? My FNA was benign too. My doctor explained it that if the thyroid is very enlarged the FNA can get cells from the middle or wherever and miss the cancer in another spot. I just finished the RAI yesterday. I was taken off my thyroid meds 2 weeks before RAI and put on the low iodine diet. I started to notice fatigue after a few days and had to stop working until this is all over. I kind of feel weird not having a thyroid and feel like my body let me down. I have been assured that once I'm back on my meds for a week I'll start to feel better. I think it's important to understand with any med you have to work with it too. Someone told when this all started and the anxiety and fatigue were geting to me to go out and take a walk. It really helps me to notice, by choice,. the beauty around me. Please try to go outside and breathe in the air and look at what a wonder this planet truly is.I hope things go well for you.

[Fiddles]

Hi ma1010ja, Thank-you for the warning about feeling fatigue when taken off the medication. Many people have said that the surgery (removeble of thyroid) is no problem it is when you are taken off the thyroid med to start the iodine treatment. How are you feeling now? How many days were you in isolation? Take care, Fiddles

[PammyD]

I had my right thyroid out in May, and just scheduled another surgery for the end of June to remove the rest of it. My FNA also came back as no cancer, but, cancer was found after surgery. The first surgery did not hurt, so I don't expect the second one to, even though with the second one, they will also be removing lymph nodes.....

[kalogan912]

the surgery was the easiest part for me, it was the lack of thyroid hormones that was the worst. it has been 5 days since taking the rai and have finally started hormones (levothyroxine) i had severe nausea,anxiety,headaches,fatigue,depression, i cried everyday. but today i kinda feel good (cross my fingers) hoping this is beginning of better days.