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biopsy results....next is radiation....any info?


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Old 09-15-2008, 06:20 PM   #1
mmmcoffee
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biopsy results....next is radiation....any info?

Heard from my Dr today. he said one of the nodules (3.8cm) was "A-Symptomatic" but cancer had not spread to lymphnodes. Next step is the radiation Dr. Can anyone give me any info on this? I will call him tomorrow to make the appt and get what info I can. The surgeon said that it's a 36-hour treatment, just once. What do you know about this? How does it feel? How does it make me feel? Any limitations afterwards?


Once I know more, I will let you know. Thanks for any info!

---mmmcoffee

 
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Old 09-15-2008, 06:36 PM   #2
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Re: biopsy results....next is radiation....any info?

I'm not following you---were you saying that your 3.8 cm nodule was cancerous?

What did he mean by "asymptomatic"---was it cancerous? Because thyroid cancer causes no symptoms, so I don't understand that terminology?

If you did have cancer, sorry to hear that. There are many threads on here about RAI. Basically, most doctors have you go "hypo" with no meds (although not in the US, they give you a drug called thyrogen instead of going hypo), and when your TSH reaches a certain level, depending upon the nuclear med facility, you have a tracer dose of RAI 131, then a treatment dose (you should isolate yourself for 3 days) and then that should kill off any remnant tissue, so you will not have a recurrence.

After the treatment is complete, you go on meds, and if you are premenopausal and in good health, your TSH should be kept suppressed so that you don't have to worry about thyroid cancer going back.

I had thyroid cancer 3.5 years ago, had surgery, then RAI, and I feel just fine, had no real major ill effects.

Do you have a good endocronologist? Often a good one will manage your care, and work with the nuclear med people to get the RAI managed and done.

 
Old 09-15-2008, 06:43 PM   #3
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Re: biopsy results....next is radiation....any info?

yes, the nodule on one side was cancer. So he said next would be radiation to kill off any remaining cells, but that cancer had not spread to lymphnodes or anywhere else. I will make an appt with him (the surgeon) and the radiation Dr and figure out what's next. I am on synthroid since the TT which was last week. I am feeling better but have yet to return to 'normal' energy level. They said that could take a while. When I go for the appt. they will check tsh levels and everything. It will have been a few weeks or so after my surgery. Does anyone know what to expect with radiation? I know there are different types. so the question may be to vague to answer. Not sure what type they use for thyroid cancer. Any info would be great.

---mmmcoffee

 
Old 09-15-2008, 08:02 PM   #4
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Re: biopsy results....next is radiation....any info?

Hello MM,

So you had a TT and now have to have radiation? Let us know what the Doctor says and keep us posted.....Could you refresh me on why you had to have a TT? Did you have a bad FNA?

How are you feeling? How was the TT for you?

Keep positive and thank you for sharing........Oleander.

 
Old 09-15-2008, 10:54 PM   #5
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Re: biopsy results....next is radiation....any info?

Hi Mmmmcoffee RAI isn't TOO big a deal, be sure to look up some of the old posts on here for more info. The hardest thing was going hypo after my surgery in prep for the RAI. I was soooo tired all the time, could barely get up in the mornings, muscles hurt from the SMALLEST activity, joints ached, had terrible brain fog and I would get hot and cold REALLY easily. It took about 5 weeks after my TT to have the procedure, and my TSH got up to 164 The only symptoms I had from the actual RAI was sore throat and cheeks for 2 days after taking the pill. You will have to be in some kind of isolation (I didn't have to stay in hospital first two days but many people do). Be sure you follow the safety precautions VERY carefully. I did it a little over a month ago. I'm feeling pretty good but still trying to even out the meds. I also am lucky enough to get to do the RAI AGAIN in about 5 months (my cancer was stage 3 and spread to lymph nodes, you will probably not have that problem ) Best of luck to you!!!
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Old 09-16-2008, 05:17 AM   #6
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Re: biopsy results....next is radiation....any info?

Don't worry so much about your med. levels, you should actually if anything, be on cytomel only if you are having RAI---you usually go on no meds for several weeks so that your TSH goes high.

Then after the treatment pill, you can go back to your synthroid and try to find the ideal dose.

 
Old 09-16-2008, 07:08 AM   #7
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Re: biopsy results....next is radiation....any info?

Reece, for all of us that are learning.....is this pretty common to have the radiation after a TT if you have cancer? Thanks for your great knowledge.

Hello to Desert Rose.....I saw you posts a while back...........Oleander

 
Old 09-16-2008, 07:19 AM   #8
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Re: biopsy results....next is radiation....any info?

It's actually a little controversial. In this case, she has a very large 3.8cm nodule, so it would be done no matter what, but if it were very small, it's another issue.

If it's less then a cm, with no spread outside the nodule, some doctors don't do RAI. But that also means that there's still thyroid tissue in your body, it will be harder to detect a recurrence, because thyroid tissue and thyroid cancer tissue are hard to differentiate without a biopsy.

If you irradicate all thyroid tissue, then keep your tsh suppressed so that no thyroid tissue can grow back, you are in theory (of course, there's always those situations where it does come back anyway), "guaranteed" to never have to worry about thyroid cancer again, because there's no thyroid tissue anywhere in your body.

My surgeon is on the board of the thyroid cancer association, and my roomate in the hospital was his patient (getting the other lobe removed). She had a teeny tiny nodule that was cancer (less than 1cm) and her endo. didn't think RAI was necessary, so my surgeon sent her endo a letter with a research paper that proved she was better off having RAI---so she was having it.

My friend on the other hand, had a .8mm nodule that was "hot", turned out to be cancerous, and even had spread to the lymph node! So she had to have the RAI no matter what.

When she went for her RAI, she met a woman in the waiting room that had her surgery two years ago, no RAI, with a teeny microcancer, and then her thyroglobulin jumped, so she had to have RAI now.

So, most people are given RAI to irradicate everything, and there are studies to support it, and it's really just more of a pain in the butt than anything else, so it's worth it to get rid of that cancer for good.

 
Old 09-16-2008, 07:38 AM   #9
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Re: biopsy results....next is radiation....any info?

I had to have the TT because of Hashimoto's, multiple nodules, enlarged thyroid and a large goiter. So, now I'm on synthroid and hoping to get that regulated to where I can feel better and have some energy. But the latest is onto the radiation/oncology Dr. because one of the nodules was cancerous. That's really about all I know. I'll find out more at my next appt. I just wondered how the radiation feels. Hot? Does it make you sick to your stomach? Tired? I don't know anything about it, but will ask the Dr when I go.
Thanks again--
---mmmcoffee

 
Old 09-16-2008, 07:46 AM   #10
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Re: biopsy results....next is radiation....any info?

It's not so much the radioactive pill that makes you feel bad---maybe a little nausea, a little headache, swollen glands from the pill....it's the going hypothyroid and being without meds a couple of weeks that could make you feel bad.

Do you have a good endocronologist in the meantime? If not, you need to get one lined up to manage your care.

 
Old 09-16-2008, 08:05 AM   #11
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Re: biopsy results....next is radiation....any info?

Yes, I do. He was the one who did the FNA, found the nodules, etc. I'm dealing with the surgeon now, then onto oncology Dr, then back to the Endo. The surgeon I had is the president of the hospital we go to. President of the whole clinic or something. Good guy. Knows his stuff. So that made me feel a little better. It's like the bouncing ball going from one Dr to the next and back !

Thanks----

mmmcoffee

 
Old 09-18-2008, 09:41 PM   #12
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Re: biopsy results....next is radiation....any info?

Quote:
Originally Posted by DesertRose77 View Post
Hi Mmmmcoffee RAI isn't TOO big a deal, be sure to look up some of the old posts on here for more info. The hardest thing was going hypo after my surgery in prep for the RAI. I was soooo tired all the time, could barely get up in the mornings, muscles hurt from the SMALLEST activity, joints ached, had terrible brain fog and I would get hot and cold REALLY easily. It took about 5 weeks after my TT to have the procedure, and my TSH got up to 164 The only symptoms I had from the actual RAI was sore throat and cheeks for 2 days after taking the pill. You will have to be in some kind of isolation (I didn't have to stay in hospital first two days but many people do). Be sure you follow the safety precautions VERY carefully. I did it a little over a month ago. I'm feeling pretty good but still trying to even out the meds. I also am lucky enough to get to do the RAI AGAIN in about 5 months (my cancer was stage 3 and spread to lymph nodes, you will probably not have that problem ) Best of luck to you!!!
Hey Desert Rose! Just wanted to say hi How are you feeling??? How's every little thing??? Me - I'm feeling better, but definitely not back to where I'd like to be. I find if I do too much one day, I'm really extra tired for a couple of days after. You? I'm glad we're both through the RAI and can share our experiences with others. And, we'll be here for you when you have your next treatment too

 
Old 09-21-2008, 08:51 PM   #13
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Re: biopsy results....next is radiation....any info?

Hey TC! Sorry, I haven't checked the boards in a LONG time. Life is so busy. Yes, I'm feeling pretty good, not as good as I want to feel, though. We are so alike! If I do too much one day, the next day or two is torture. I spent yesterday and last night playing at the playground with my daughter and neices, attending nephew's football game, and partying it up at a cousin's wedding reception really far away (no drinking, just lots of dancing! ). We got home at 10:30 and waking up was even worse than usual this morning (although morning's are generally my worst time of day. Do you have a time of day that's better/worse?) I've been tired, achy, crabby and just not feeling good all day.

So I got my test results back, and they aren't too bad (I think). I'd LOVE some advice because I totally don't understand the numbers, lol. I'll check an earlier thread for a crash course

TSH: 1.03
T4: 7.3 (4.7-13.3)
Total T3: pending
Thyroglobulin P: .08 (1.3-31.8)

They STILL don't have the T3, even though it's been over a week, but I'll hopefully find out this week what that number is. I'm a little disappointed because I was hoping for a slight increase in meds since I still get tired SO easily. It doesn't seem likely from those numbers...

Wishing you and everyone else a happy, healthy week this week!!!
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Old 09-26-2008, 11:13 AM   #14
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Re: biopsy results....next is radiation....any info?

Hiya Desert Rose Well, I'm taking it as a GOOD sign that we're not posting as much these days Hoping it means we're both feeling better! Let's see..........mornings are my most difficult time of day. I REALLY REALLY need my coffee to get going (HEY MMMcoffee )!!

But I have to say these last few days..........I'm starting to feel like my old ***spunky*** self!!!!!!! Whahooooo!! I still poop out sooner than I'd like, but it feels so good to begin to feel spunky again!

Since getting my tastebuds back about 3 weeks ago, I have been eating like crazy I finally decided to weigh myself this morning, and fortunately, not too bad. ****{whew}}}. I'm with you about a poor diet as of late. With my tastebuds being wiped out for that month, all I wanted to do was eat junk/comfort food once they were back. Actually went to the fair a couple of weeks back and indulged in a caramel apple, scones, and a funnel cake Yea - not exactly healthy fair but fun!! Hehehehe!!

Life is picking up speed again. What a blessing!! All my best to you DR, MMMcoffee and all my fellow thyroid folks!!!

PS - Bella sends out a ***ruff*** to MMM's Belle

 
Old 09-28-2008, 06:00 PM   #15
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Re: biopsy results....next is radiation....any info?

Hi girls!! TC, it was good to hear from you! I'm glad you're starting to feel your spunky old self sometimes! I've caught a few glimpses of that myself, and it is WONDERFUL! Have you gotten bloodwork done yet? How's that lookin? My oncolgist wants my TSH lower than .5 so I will start taking 150 mcg of Levithyroxine next week. My TSH is only 1.03 but it's weird, I don't FEEL like it's that low, y'know? I feel LOTS better than I did earlier this summer, don't get me wrong, but I still get the fatigue, achy joints, burning arms, etc. almost every day. They may not last long, but still, it would be nice to go a day w/out any symptoms. LOL, is that just a pipe dream?

Mmmcoffee, how're YOU doing? I TOTALLY understand the bouncing between Dr.s thing, but at least it sounds like you have competent people looking after ya. Speaking of, I almost forgot my good news!!! There's a possibility I DON'T have to do the RAI again in Feb!!! Talk about miscommunication between Dr.s, I truly though my oncologist said I had to go through the RAI treatment again in February because of the "hot spots" on my body scan. Talking to my ENT, he was like, "umm, no, I'm calling him because I don't think that's right." Sure enough, the onco was trying to tell me I had to have the SCAN done in Feb to see if the spots have died out. Talk about a load off my shoulders!!! At least now there's a chance I don't have to find daycare and a substitute for an entire week.

Well, girls, have a terrific week. And here's to not being too tired!
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