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Old 02-25-2006, 09:09 PM   #1
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tigermom710 HB User
Question TT on 2/16/06 - Low Calcium/Pap. Cancer - RAI in April ?

Hello, this is my first post and discovery of this board. Glad to see other people with the same problems.

I had a total thyroidectomy last Thursday, Feb. 16, 2006. This was suppose to be a simple 1-2 days in the hospital. I got out this week on Tuesday, because my Parathyroids stopped functioning and my Calcium level dropped dangerously low. I was on a calcium IV for 5 days. I never new that this could cause a big problem until it hit me. Now I am on Calcium and Vitam D supplements and still feel week. I had a multinodular goiter, with one nodule having Pappilary Microcarcinoma (only 0.33cm) and the thyroid having been very large and had hemorreaged with the largest nodule being 2.5cm x 3cm. No sign of cancer in surrounding tissue. No lymphonodes were taken.

I was told by my doctors that I can not take Synthroid for the next 5 weeks, than get a blood test to see the tsh level being up enough. After that to be in a isolation room for 3 days to receive RAI treatment.

For people wondering how long it can take to recover........just keep in mind that complications can arise. I was also told I can't drive for 1 whole week after release from the hospital. My sick leave has been extended.

What happens to people off from synthroid? I had been taking it for 2 years until now. I plan to go back to work next week (wed) if I get the ok from the doc.

What happens after RAI? Are people out sick for a long time? Does the breast cancer connection have validity?

After reading some posts I feel confused.

Did anyone have sore lymph nodes in the chest/armpit/neck area prior to the surgery? Or earaches? Or something that almost feels like a heart attack? I had all those and wonder how much is related to it, since my heart is in great condition. I ended up in ER 01/20/06 with bad chestpains/neckpains. They couldn't tell me what caused it.

Did anyone have to go back later and get lymphnodes taken out, or is that unnecessary for such a small cancer?

ALSO......I had 2 biopsies, one 2 years ago and 1 last November 2005 - both NEG.........and still had cancer in one nodule!!! Remember, they don't test every cell.

I have a feeling this journey will be a little more complicated than I originally thought.

Thank you for any advise.... & ......... Best of Luck to All.

Marina

 
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Old 02-25-2006, 09:33 PM   #2
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Re: TT on 2/16/06 - Low Calcium/Pap. Cancer - RAI in April ?

Uh oh - I'm confused. What connection to breast cancer???

And, welcome. I am sorry you had such a difficult week. That's not usually the way it goes as I am sure you know. I do know that you're not supposed to drive until you can move your neck side to side easily. It took me almost 3 weeks but everyone's different. You have to be able to look for traffic etc. I'm sure that's what they're talking about as far as not driving.

I don't know anything about the parathyroids except that I do know it's another real problem when they're involved. Others here can address that.

You won't die off the Synthroid for 5 weeks but you'll probably get really hypo which is awful of course.

Yes, I had earaches before. Actually they still hurt. No probs with the lymphs under the arms etc luckily. And yes I do know that especially with papillary cancer since it spreads to the lymph nodes that going back if for surgery happens. Sometimes you have to have what's called neck dissection. They do one side then 3-4 months later the other. I don't think that's a fun thing.
Yes, I've had the chest pressure and heart palpitations. Many here have and I think that's part of Hashimoto's but others may correct me.

I don't trust the biopsies either. I agree about them missing things. I had a biopsy initially which by the way hurt like hell and I wish I would have know it was going to hurt that badly for 24 hours AFTERWARD. Then the pathology after the surgery took a week because it's much more thorough I guess. That's when they found the cancer. The initial biopsy result was follicular neoplasm which means "take it out and do a week's worth of pathology". Then it wasn't follicular cancer but papillary. It's all confusing to me. And my nodule was "supposedly" just a follicular adenoma. The cancer was in the other thyroid tissue. However my nodule was over 4 cm and I swear I could see it grow in the mirror!!

I wasn't much help. I'm sorry. Most everyone else here knows much more than I do. Welcome again and best of luck. Stay here because people here really do help.

 
Old 02-25-2006, 09:40 PM   #3
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tigermom710 HB User
Re: TT on 2/16/06 - Low Calcium/Pap. Cancer - RAI in April ?

Thank you for your reply. Every little bit helps! I'm amazed how many other people have the same problems, and it's not just me or "in my head" as some doctors and people say. Thanks again, Marina

 
Old 02-26-2006, 04:33 AM   #4
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illmakeit HB User
Re: TT on 2/16/06 - Low Calcium/Pap. Cancer - RAI in April ?

Hi tigermom710! Welcome to the Thyroid board.

You'll find the pp here quite knowledgeable - except for me - and I am trying to learn. Unfortunately, I don't have any info for you -still learning. And no experience with any problems - yet. Just a little hypo.

Molly & tigermom: Don't know about breast cancer connection. I have been searching for info on it and it seems to have gone back and forth - So far the latest I found is from Feb/Mar 2005 The University of Texas M. D. Anderson Cancer Center did a study and found that women with hypothyroidism have a reduced chance of developing invasive breast cancer. The study was published in the March 15, 2005 issue of Cancer.

This is not saying if you have Thyroid Cancer what the risks are, though. I am not sure if they know - maybe someone else here can shed a light.

Since I don't have thyroid cancer why don't one of you start a new thread about thyroid cancer/breast cancer? I know SOMEONE has the info. I bet Reece knows.
Quote:
Originally Posted by Reece
My surgeon was very pro-RAI, so I went with his recommendation. I don't know what created my thyroid cancer, so of course, I didn't know how else I could make sure it never came back again. But I'm the type who wants to be as aggressive as possible.

There is an additional theory about the breast cancer connection, which my surgeon and the radiation center both addressed---pp. who get one kind of cancer, are more likely statistically to get another cancer---what a great thought!
Anyway, this bumps up your thread.

Take care and good luck with answers to your questions.
__________________
"I'll make it"
Jewel TT 1/26/06 -Levothyroxine 75-88

Last edited by illmakeit; 02-26-2006 at 04:43 AM.

 
Old 02-26-2006, 06:38 AM   #5
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Re: TT on 2/16/06 - Low Calcium/Pap. Cancer - RAI in April ?

There are so few good studies on thyroid cancer in general, that the studies on breast-thyroid cancer and what causes breast cancer in general, (which is unknown) were just too tough for me to evaluate. I trusted my doctors and treated aggressively, and I hopefully, I did the right thing. Nodules over 2cm routinely get RAI in the US, but some doctors will do it for any size nodule.

Tigermom--I did have swollen lymph nodes----the doctor removed a couple during my tt because they were enlarged, and they were negative for cancer.

When you are off synthroid, with no thyroid, you will become "hypo"---so you will feel the symptoms like the pp. on this board often do. The RAI itself is not a big deal, you might feel some nausea or headaches the first day or so. But being "hypo" for a while might effect you at work----I did well until week 4, and then it was tough to get around--everyone is different. Once you finish RAI, ask the doctor for some cytomel too, to give you some of the hormones you need to get back to functioning.

You are so lucky you found yours sooo early!

 
Old 02-26-2006, 12:53 PM   #6
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tigermom710 HB User
Re: TT on 2/16/06 - Low Calcium/Pap. Cancer - RAI in April ?

Thank you guys!
Once again I am so thankfull to have found this board. Anything helps at this point. In the last 2 days I have been so tired that it's hard to catch up with things after the hospital stay. Plus, I seem to get upset much easier too.

Also I have the Calcium issue. I have read that Tums is not such a good source since it keeps down the stomach acid required to being able to digest and absorb the calcium. The docs told me to take 6 tums/day (3,000mg) plus Calcatrol (Vitamin D).

I might need to post this seperately. Does anyone have a better source of calcium than Tums?

Thank you all a million,

Marina

 
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