Was diagnosed with papillary thyroid cancer and had a total thyroidectomy and one lymph node removed on 8/1/11. In November I had a radioactive iodine treatment and a follow-up whole body scan. I had a great surgeon and have a wonderful endrocronologist. I feel like a million bucks!! If anyone wants to chat or has questions, I'd be happy to communicate with you.
I am so glad you are doing so well after such a short time. It took me a while to get back to feeling like myself again (I didn't adjust to the medication very well), but now I'm much better. It's been almost 6 years after my thyroidectomy, when I was 24. I try to stop by this board every few days and answer questions for people and, if you're interested in reaching out, another person's story would be really helpful. As you can see from reading the questions, a lot of people who post are in the early stages of diagnosis or treatment, sometimes before they even know if they have cancer or not. It's a really uncertain and scary time, as you probably know. Another positive voice of reassurance would be welcome.
I've also learned so much by reading other people's stories and doing research. It's helped me on my own journey, too.
Thank you MyraU -- that's exactly why I posted. Shortly after my diagnosis and before surgery, etc. I couldn't find very many positive things people had to say about their treatment for thyroid cancer, so I felt I needed to share my very positive outcome and hopefully reach out to anyone who needed some positive reassurance.
Ditto on learning so much by reading other people's stories and doing my own research. It's also helped me on my journey. I hope you're well also and I hope to be seeing you around.
Thanks for the positive reassurance. I go for my pre op this week, and my surgery next week. I have papillary thyoid cancer so they are removing the whole thyroid.
Does it take long for the body to adjust to the lifetime meds?
I know everyone is different...I guess I'm just hoping things adjust quickly.
Thanks for any positive encouragement.
status post thyroidectomy, pathology shows papillary carcinoma
My right lobe thyroid nodule was 1cm, FNA biopsy came back as suspicious for papillary carcinoma. Had a thyroidectomy 3/15/12, pathology showed papillary carcinoma on the right side and a small amount on the left side, margins were clean and 2 nodes were negative. I was told with just that, I probably wouldn't need the iodine ablation, but since the thryoid capsule showed invasion, my doctor said that I should have it, so I am going tomorrow to set up appointments for the thryogen I131 treatment and full body scans, etc. I am on levothyroxine 125 mcg. My energy level is on the low side. I am taking 2,000 mg of calcium with vitamin D. From what I have been reading, it helps to take vitamins B6 and B12, that may help boost my energy, so I will try that.
one month ago i had two neck scans, 3 weeks ago i had a ultra sound, 2 weeks ago i had a needle biopsy (four biopsy's). after the biopsy i ended up staying in ICU for 3 days. through all of this i haven't gotten any solid answers. my doctor said that my thyroid is suspicious of cancer and made a appointment for me to see a sergeon on friday the 10th. so in two days i find out if i have cancer or not. i believe that with all the tests he knows whether or not i have cancer. i don't know what to expect friday. i'm scared to death, and getting a little mad. i don't know where to begin to research this because i'm not 100% sure what "this" is. it's so frustrating that out of these dr's nobody will tell me anything. i tell my main dr i'm having a hard time breathing, this nodular or whatever it is is growing rapidly, it's getting harder to eat. and he tells me to just talk to the surgeon.
i'm sorry if i'm coming off as venting here. i just don't know what to do.
Do not despair. There is still hope for a cure. If your doctors have asked you to be on Thyroid meds, I strongly advise to take it in the morning before meals. Also, do not take any soy products while on your Thyroid meds as soy conflicts with thyroid meds. Apparently, tofu, seaweed and soy should be avoided. I have been on Thyroid meds since I was 19. I was diagnosed with Papillary Carcinoma in Jan 1984. I am now on Armour Thyroid which is a combination of T3 and T4. I take 120mg in the morning as soon as I wake up and then I take 60 mg during the day to maintain my energy. Although lately I feel I easily get nervous and forgetful. These are to be expected "symptoms" that I have read from my doctor. I also take 12 tabs of calcium 600 mg each with Vit. D daily. (this helps absorb all the calcium intake). I also got Vit D 5000IU on sale at Costco which is taken twice daily. My doctor has advised me to take Vit B6 and B12. Can't remember what for - memory loss perhaps? =)
If you read the stories on here, your story isn't that uncommon, unfortunately. A lot of thyroid nodules involve waiting--waiting for tests, waiting for results, waiting for appointments.
It's also possible that the biopsy was inconclusive. That's what happened to me. Even after they took out half my thyroid, they couldn't tell what it was until they sent it down to some fancy lab. But the fact that it's growing probably means that it doesn't matter what the biopsy says. If it's interfering with your breathing and eating, you probably would have to have surgery regardless. If they are unsure, then they will probably only take out half of your thyroid (the one with the nodule), and then send it out for more tests. But if they are sure, then they'll take the whole thing in one surgery.
I know it's terribly frustrating and really scary, but everything that can be done at this point is being done. In two days, you'll know what the score is and probably when you'll have surgery. Even if it's not cancer, you'll be better off getting rid of what is making it hard to breathe and eat. And the stress is probably making it worse, too.
I would advise you to write down all your questions for the surgeon and make him answer them. Even if he tries to rush out, say "one more thing" or "I have more questions." Be nice, but firm. You have the right to have your questions answered. Writing them down will keep you from forgetting them in the middle of the appointment. Also, write down your symptoms, how long you've been experiencing them, and make sure the surgeon has all your tests and scans before your appointment (ultrasound, blood tests, whatever). Bringing someone with you would also be good, especially if you are feeling overwhelmed. Another set of ears can be really helpful. Also, someone to take notes while you talk to the doctor.
I know this all happened pretty fast and it's all seems really overwhelming, but I think you are on the right track. Actually, I don't think there really is another track, from what I've experienced and what I've read on here of other people's experiences.
If you have more questions or just need to vent, feel free to re-post. We're always here. Let us know how the appointment goes.
thank you for replying. like i said, i'm sorry for sounding a little crazy right now. after the biopsy i spent 3 days in icu. i had seizures during the biopsy. from everything i've read i know i'll end up having surgery. i'm just scared i'm going to seize during the surgery. the thought of a scapual at my throat while i seize isn't setting well with me.
like i said, thank you so much for replying. maybe i'll get some sleep tonight.
I am new to the forum but not to thyroid cancer. Had thyroid and 2 lymph nodes taken out in 2000 due to papillary thyroid cancer. Had 2 rounds of I131 radiation and was declared cancer free in 2004. My major problem has been calcium levels. Everything else seemed to stabilize fairly normally. Have been on 225 mcg of generic synthroid for a couple of years. Had gastric bypass 4years ago, and now (4 years later) my levels are all screwed up it seems. Wondering if anyone has dealt with thyroid storm (thyroid crisis) after complete thyroidectomy and being stable for years? My symptoms: heart palipatations, cold hand, insomnia, MAJOR irritability, clenching teeth, headaches, unable to focus, etc. Any help would be GREATLY appreciated! Thanks!
New to forum, I just had surgery on Nov 30th to have 1/2 my thyroid removed because I had to masses on it one was 3.4cm and one was 2.7cm. I denied the small needle aspiration as the Dr said surgery no matter what.
So I had a follow up 10 days after surgery at which time test results of the masses were not in because they had to be sent out as the lab here was unsure. So the Dr called me a few days ago and I have papillary carcinoma thyroid cancer. He said he is going to set me up with a cancer specialist and that it is in my best interest to have the other 1/2 of my thyroid removed and then undergo iodine radiation. Ok so I have accepted the cancer into my life my problem is I struggle to loose weight, I'll lost 19 and gain 15 and continue to do this and I am SOOOOO scared that with out my thyroid at all even with med replacement I'll severely gain more weight and I really love the energy level I have right now opposed to before the surgery and don't want to lose that either. Anyone have anything they can tell me about weight loss or gain and lack of or more energy after total removal?
Hi in 2012 i had a partial and a then then 6 weeks later a completion of removal of my thyroid, i had both papillary and follicular cancer ,plus hashimotos thyroiditis (inflammation of the thyroid) i,ve
had 2 big blasts of radioactive iodine treatment and i,am still waiting for the results , the thing with thyroid cancer is the time scale , you wait for the results then the results for the radiation uptake then the gammer scan then the results from the next small iodine uptake and so on and so on , and you cant rush this because of the levels of radiation in your body but in the meantime you have to get the medication right so you can function without falling asleep or become nocturnal , and then watch your weight gain , mood swings forgetfulness and the aches and pains from the lack of calcium , who said that thyroid cancer was one of the "better cancers" to get if there is such a thing.