Just diagnosed with thyroid cancer

Glad they caught it. Mine was caught by accident, too. Just went into the doctor with the flu.

Are you going to have Radioactive iodine after the surgery?

Please re-post if you have questions or anything. We also need more people to share their stories. Sometimes it gets a little lonely around here. I've been thyroid cancer-free for 5+ years now and I've done a lot of research, so if you have any questions or issues with your thyroid meds, I'll do my best to help.

What kind of thyroid cancer did you have?

Papillary Thyroid Cancer stage 2. Have an appt at UNC for full body scan followed by RAI in February.

I feel good ... surgery was a breeze. I am ready for February to come and go, though!

Just realized how awful typing was in original post ... thank you iPad!

Glad the surgery went well.

Judging from your attitude, you probably know this, but RAI isn't anything like traditional radiation or chemo, so don't worry about that. You might get a little nausea if you are prone to it, so have your doctor prescribe something, just in case. And have the sour candy ready to flush it out of your salivary glands every few hours. But other than that, no side-effects, really. We are actually really really lucky.

I'd have to say that the worst thing about the RAI (other than the isolation for two or three days) is the low-iodine diet beforehand. But it seems like they have a lot more resources and recipes out there than they did 5 years ago when I was doing it. My advice: plan ahead of time and keep it simple. You're going to be hypothyroid and aren't going to want to do squat. So unless you have someone who is willing to cook for you, make stuff ahead of time, especially when you are in the actual treatment-stage. I just wanted to lay in bed, watch TV, and sleep all day.

If you have any questions, feel free to post.

Hi-MyrahU: forgive me if I am naive, but I have yet to see my endo, so I still have lots of questions....who gave you the info about low iodine diet? Also does everyone get RAI post surgery or only if it has spread to lymph nodes? If it has spread, does it tend to stay in the lymph nodes near the thyroid? I guess my doc is doing a central neck dissection even though my ct scan didn't show other nodules or nodes affected...at least I dont think! My nodule is fairly small... .7. And I have papillary... Not sure what stage if there are stages? Anyway, keep in touch-sounds like you are doing well!

I would say that RAI is recommended a good majority of the time, regardless of lymph node involvement. Some research suggests that it isn't always necessary early-stage cancers. However, by doing the RAI, I have read and my doctors have said that the follow-up blood tests that check for re-recurrence are more accurate and they don't have to be as concerned about keeping the TSH as heavily suppressed for as long after surgery.

Also, with the RAI, they do a scan to see if there is any thyroid tissue anywhere else in your body (because it will light up like a Christmas tree), so there's that, too. They'll probably do one after the RAI ablation treatment, as well, just to see that everything is gone. Then you'll probably never have to worry about it again.

I got some of the information about the low iodine diet from the nuclear medicine department at the hospital where they gave me the RAI. It's not something that can be done in the doctor's office because they can't keep that kind of thing lying around. So I went in a few weeks before for my consultation with the nuclear medicine doctor, so I could have time to prepare. Then on the day of, I went in, swallowed the pill and went home to my Fortress of Solitude for three days.

I think that if the cancer is a type that spreads to the lymph nodes (which papillary is), that it generally stays in the area, at least at first. In more advanced stages, it can spread further, but that doesn't at all sound likely in your case with such a small nodule. And even if a couple of cells are missed in the lymph nodes, that is what the RAI is for. It targets thyroid cells, cancerous or not and kills them, anywhere in the body. That is why you have to be isolated--should some of the RAI in your sweat or saliva or whatever contaminate someone else, it could damage their thyroid gland (not totally in what would be a small dose, but still not good). I didn't even want to be around my sweet kitty because I didn't want to contaminate her. After a few days, it's all out of your system and you can return to normal.

There are stages of thyroid cancer, but often it's not as much of a focus as it is with other cancers, it seems. I think there are guidelines based on how large the nodule is and if it's spread and how extensively. But if it's in the early stage, especially less than a centimeter, it's not really a concern. Plus, papillary has a great cure rate, especially when it's small.

I recommend writing down all your questions you still have for your doctor and taking them to your appointment. Also, the board is always here to help, too. Best of luck.

Thank you so much-you are full of knowledge!!!! I moved my surgery up to feb 1st....I will let you know how it goes!!

Laura,

How is the RAI treatment going? I was just diagnosed with papillary thyroid cancer and I'm trying to get an idea of what I need to prepare for. I meet with the surgeon next week. The hardest part is thinking about not being able to care for my 13 month old daughter.

Hope you are doing great and fighting strong

Julie!

Luckily, the RAI treatment itself doesn't take long, only 2-4 days max in isolation). It's not like regular chemo or radiation where you have months of treatment. The withdrawal from your thyroid medication will be worse, since you'll probably get progressively tired, but if you are put on Cytomel instead of Synthroid after surgery, the withdrawal period will be shorter (since it clears your system faster). After RAI, you can be put on Synthroid and find your proper dosage.

You might need some help with your daughter and with other things as you withdraw from your meds, since you will be tired, but not everyone gets as tired. Depends on the person.

I dont know if anyone will read this but I am 16 and three years ago was diagnosed with Thyroid Cancer, had two operations to remove both halves of the thyroid, a course of radioactive iodine treatment and am on calcium replacement medication and thyroxine for life as one of my parathyroid glands were accidentally removed in the surgery and the other three so badly damaged that they cannot produce calcium. I feel alone in this as it all happened so fast and i dont feel as if amongst my friends or in general it is seen as much to go through when people with worse types of cancer suffer much more. But I feel as if I have gone through so much and still having blood tests and changing my meds all the time as I am still young. Just feel like I am being pulled from place to place and nobody really talks to me properly about it. I know its selfish but I would have liked a little more fuss from the people around me as I feel as if it is a big deal for me but nobody around me seems to think so, all they see is me taking 5 small pills... nothing right? Its everything else that gets to me though and I am so glad I found somewhere like here to talk to someone about it.

i couldnt imagine how lonely you must feel.I am in my 50s and not coping realaly well with my upcoming surgery for possible cancer too.I pray you know God is with you as I sure need to know too.Youre in my prayers and it could be much worse...

Thankyou, I really hope your surgery is successful and that it is the worst part out of the way. I am so grateful to find this place to share my feelings as it is not a very-well discussed topic and not very common in general. But I guess in the end everything gets better, eh?