HOW LONG?

Okay, so today is day 9 post TT for papillary carcinoma and i'm not feeling too bad, but not feeling all that energetic either. I'm not really sure how I should be feeling besides being depressed. But I did go to my Endo yesterday and she said she wants me to come back in to get blood draw in 6 weeks to check levels and I will be having RAI in probably 2 months. I go see the surgeon tomorrow just to check my incision but can anyone tell me why is it such a long wait to get treatment after surgery? Is the 2 months standard wait time after cancer diagnosis? Endo told me that my nodules were papillary cancer with follicular variants-can anyone explain what that means please and should I be more terrified than I am already? I just don't understand any of this. Since 1 of my lymph nodes tested positive for cancer-does that mean the rest have cancer-I mean how do we get rid of this if it can pop up somewhere esle? The way my Dr first explained it-surgery would be the cure? I am not sure if I have any thyroid tissue left but my surgeon did tell me that I still have all 4 of my parathyroid glands.

Can anyone think of any questions I should be asking the surgeon tomorrow? I am so nervous and I just don't wanna miss anything-any input you have is greatly appreciated! Ok I will breathe now-thanks for listening

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Your diagnosis is the same as many of ours and is the least scary of the possibly thyroid cancers. The fact that it spread to your lymph nodes means that you need the radioactive iodine treatment for sure, and hopefully that it will destroy any remaining thyroid tissue - that left behind by the surgeon (because it's impossible to remove every cell without damaging surrounding tissue) and any thyroid cancer cells that are in your lymph nodes.

"Standard" treatment times vary but if you are waiting 8 weeks to have RAI after surgery, you should be taking Cytomel (T3) - the short acting thyroid replacement hormone - for the first 6 weeks. This will make you require less time of actually being in a hypothyroid state - 2 weeks is required before treatment for your TSH levels to be high enough, but you probably really don't want to be without any thyroid hormone for a full 8 weeks. I have been without it for 2 weeks and am starting to feel significant effects - needing a nap every five minutes despite sleeping 10+ hours a night - dreading the next 2 or 3 weeks before my RAI (meeting with nuclear medicine on Monday for a consult and to schedule).
From what I have read, TSH levels either require 3-4 weeks without cytomel being used at all or 4+2 weeks (6 total) if cytomel is used during the first 4 to supplement T3 levels. Not wanting to wait so long is the main reason I didn't insist on cytomel from my endo.

I was still a bit run down from the surgery 9 days post-TT, then felt better for just a few days before the hypothyroid symptoms started to kick in.
Good luck!

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I had my thyoid removed 3 weeks ago, and I am waiting to see the the Nuclear Medicine doctor (RAI guy) next week. I had a diagnosis similar to yours, total TT, 4 lymph nodes were invaded by the thyroid cancer and removed. This is what makes me so nervous, possibly still having cancer in my body while I am waiting for RAI. I even asked the endocrinologist if I could have the RAI as soon as possible, and that I would have no problem doing the LID and going hypo immediately. I didn't want to wait the 2 months post surgery. In my opinion, waiting 2 months allows time for the cancer to spread. Although I said all of this to him, he said that the standard procedure is to wait the full 2 months to start scheduling the RAI. He did not seem alarmed or worried to wait this time. I looked up all of his credentials, schooling, any malpractice on the internet prior to seeing him (hey, I gotta make sure <smile>), since he was recommended by my surgeon. He seems to know what he is doing. After that, I felt a little better. That's why sites like this are a lifeline when it comes to these types of diseases. We can all post our experiences and incorporate what we have read into our questions for our individual doctors. Make sure you visit this site as often as you can. Read and process what everybody has to say. It will help you get through this scary time. Sometimes the emotional scar of having cancer doesn't heal as fast as our surgical scar. Hang in there. We'll be here for you.

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Hello Stacey,

My RAI was about 2 1/2 months after my surgery. I've heard quite a range of timings among the people I've met.

The Newly Diagnosed section http://www.thyca.org/newly_diagnosed.htm of ThyCa (Inspire's partner in this online community) has lots of helpful information about treatment for papillary, follicular, and their variants (I gather than papillary with follicular variant is very common). Also help for the low-iodine diet, and information and tips for after receiving RAI.

Treatment and followup are similar for all these (they're all Differentiated Thyroid Cancer, as is most thyroid cancer), tailored to individual situations.

Wishing you well,
Cherry
TT and RAI, 1999, papillary

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Thank you all for listening and answering! This site is my lifeline and truly a blessing!! Well wishes to everyone:-)

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MY RAI was also 2 months post op and I like you was in a total state of panic and I was convinced that the cancer was being allowed to run rampant in my body! They can't take the entire thyroid during surgery. Due to how it is positioned in your body, the surgeon can't get to all of it without opening your chest. The RAI dose is designed to ablate the remaining tissue they couldn't get during surgery and also to track down and kill off any cancer cells that may be in your body. The Nuc Med MD explained to me that what makes Thyca so treatable is the fact that no matter where in your body the cancer may have traveled, the RAI will seek it out and destroy it. The body is craving the iodine and it doesn't realize the iodine in the RAI is poisoned so the bad cells "gobble" it up (like Pacman!) and then get's destroyed. They type of Thyca that you have, has a 90%+ cure rate. That is tremendously high treatability, so try to hang on to that when you're feeling especially frightened. Your fear by the way is real and you are entitled to feel that way! We have all been there and experienced it...

You sound like you're on track for healing. It is a long process to get back to "normal" and you may like me find that you have a "new normal". Be patient with yourself and don't expect too much. It takes approxmiately one year to heal from this srugery. I wish you well on this journey.

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I had a tt on mar 23, saw my endo on apr 13 and scheduled my rai for may 2. They told me they wanted to do the rai 6 weeks after surgery. They wanted me 6 weeks of being hypo. I have been blessed and was never on any meds for my thryoid so I think that is mainly why it doesn't all seem that bad to me- forgive me if I sound rude.. But when I asked the endo about the effects of being hypo, he told me it's a gradual process and it would tAke a few months for me to feel the effects- that's why they wanted to have the rai done asap so they can start my synthroid.

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Hi Stacey....I am day 10 and I am feeling good.... tired but good. I have to wait until May 9 for a followup with the surgeon. She has requested that I do a blood test two days prior to seeing her to see how the thyroxin is going.
My surgeon told me that if RAI happens it will happen 2-3 months later. She explained that there are small bits of thyroid left close to nerves and by starving the body of iodine, which takes time, the iodised radiation targets this area.
As for lymph nodes.....not sure!
I hope you feel better soon.
Caz

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I know two months seems like a long time, but try to remember that thyroid cancer grows slowly compared to other cancers, about the rate of normal cells. (FYI, this is why chemotherapy has no effect on it; chemo targets the body's fast growing cells: cancer, hair follicles, and the cells in the lining of your stomach are examples.) It's very important for you to wait at LEAST six weeks and preferably the two months so that all of the T4 is out of your system and your TSH is high; otherwise the treatment won't be effective.

I really understand how frustrating it is to wait so long. I had a staged thyroidectomy Oct 21st and Nov 1st of last year, and then had to wait until February 12th for a neck dissection, then not until March 28th for RAI! At the time the waiting seemed like the worst part. I had a lymph node in my neck I could feel, and once I had a core biopsy on it and found it was cancerous, it felt like this alien invader in my neck. And I still had to wait six weeks after that before they would cut the darn thing out!

You'll get through this. I had the follicular variants too and it doesn't really seem to affect the treatability of it. You can do it! Once it's all over you'll look back and it all won't seem as bad as it did at the time. At least, that was my experience. I'm still gradually building up thyroid hormone in my system, and that process seems to take FOREVER, but once you're on the upswing, things do start to look better. Good luck!

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Thank you Campsandalwood, Jab29, CazTasmania and sunnysue s bunch! Seriously, if it weren't for you and everyone else's own personal stories and input-I would totally be up the creek without a padle on this. It is just so nuch I don;t know about it, and although my dr's have been nice-they still can't answer all of my questions or they expect me not to be nervous because all they keep saying is "If I had to choose a cancer, thyroid cancer would be the one because it has a high cure rate" which is very good don't get me wrong but I still need to know what is going on!

Prior to thyroid surgery-I didn't take any meds-as my thyroid blood tests were always normal-so I didn't have a clue that something was wrong. I now remeber blacking out a couple of times and just having severe fatigue and body aches-they would never be able to find the culprit so maybe it was my thyroid all this time?

After the surgery, they put me on 125mg of Synthroid, and I will see Endo in 6 weeks for blood tests to check levels, then have RAI done because 1 of the 8 of the lymph nodes that were taken out of my right side was invaded by cancer. Does anyone know if that is standard? I am grateful that my surgeon made a good call and decided to take my whole entire thyroid because he told me that my left lobe had a small undetected cancer on it too. That would have been 2 surgeries if he had only just taken the right lobe as planned. Yesterday he told me he took everything but was able to leave all of my parathyroid glands. Truly grateful. The only thing I am having a problem with is my voice- I cannot sing anymore or project my voice at all. It has only been 11 days, so in time, my voice will come back.

Thanks you guys again!! Well wishes and God Bless to you all:-)

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