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Upcoming Rai

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Subject: Upcoming RAI
Date: 05/01/2008

Hello,

 My story goes like this, I had a lump in my neck I found 5 years ago.  When I found it I had just got into a car accident and my muscles in my neck were so sore.  Me being "not a doctor" but trying to guess, figured I had some kind of scar tissue from the accident and didn't do anything about it.  5 years later the lump was still there, didn't notice that it was bigger(big meaning 1" in size), but I started to have numbness to the lower part of my jaw on that side.  I got worried and went in, they said the lump was a lymph nod that was enlarged and I should get it checked out.  That was this January.  Many appointments later, I had my first surgery to remove the lump on March 5th.  Found out it was Papillary Thyroid Cancer, and had my Second surgery on April 1st. 

This year has been a crazy ride, it's seems surreal experience and I don't think it's hit home yet.  It's been a month since my total thyroidectomy and right nect disection, and I'm attempting to go back to work.  It's hard though because it seems like I'm still real tired.  I'm sure my meds aren't at the right level, but not to worried about it.  I go to my Endocrinologiest again on May 14th, where she'll let me know what date to expect my RAI.  I'm assuming since my pathology report came back that I had cancer in 13 of my 30 lymph nods, that I have to have a high dose.  She told me I'll be isolated to the hospital because of the high dose that I need. 

I'm a 31 year old single mother of 4.  I'm trying to maintain my financies with little income so this has been hard.  I make to much for state assistance but now I've been off work for over a month.  Anyone know of any financial assistance out there?  I do have medical insurance, thank god, but I'm still responsible for $3,750, for this year.

 Now for the questions. 

1.  My best friend is pregnant and wants me to be in the room for delivery.  How long after treatment is my radiation levels to high to be around pregnant people?  She's due in August.  I had Iodine contract CT on March 15th, so Iodine introv, is delaying my RAI treatment.

2.  I had 2 out of 4 parathyroids removed.  One of the two was implanted in my muscle so it won't work right away I guess.  Does anyone know the odds of me being Hypoparathyroid after this?  Test aren't in yet and I'm sure I'll have more info at next appointment, but it seems like forever to wait and wonder.

3.  I had a complication from surgery, I didn't get my drain removed for 18 days because of a "Chyle Leak", has anyone else had that?  I had to be on a No Fat diet until it stopped and for 7 days after I got my drain removed.  Talk about adding Salt to the wound, but at least I didn't gain a lot of weight.  A non fat diet made me lost 15 lbs. 

4.  I started Physical Therapy today because of loss of strength in my right sholder and stiffness in my neck.  My physical therepist said my right arm seems swollen.  He's going to call a specialist of the Lymph Nod system because he thinks this also could be a complication and I might need to be worried.  Did anyone have anything like that, I think it's still fluid from surgery, but I better not try to be a doc again?

5.  My CT Scan in March only showed 2 lymph nods affected when actually there were lots more.  I understand after the RAI, they will take more pictures of where the RAI absorbs to see if there is anything else left.  My question is, if injecting me with Iodine didn't show the other cancer in my neck, then how will the RAI, show it.  It's the same idea isn't it. 

 Well that's probable to many questions and everyone will be scared off to respond, but i hope to hear back from someone who can relate.

 

Thanks to all,

Angie, Thyroid Cancer patient

Subject: RE: Upcoming RAI
Date: 05/03/2008
I can't address all your questions but regarding the loss of muscle strength on the side where a neck dissection was performed.  I recently had a left neck node dissection and had loss of strength and mobility in that shoulder but PT (physical therapy) did wonders and I had in 4 to 5 weeks regained all strength and mobility.  Now you mention about the fluid in you arm, I believe.  This is probably lymphadema.  Because you have lost a large part of the drainage system any injury etc. can easily cause a build up of fluid in the arms particulary.  This should be addressed ASAP to get the best results as I was told by a PT who specializes in lymphadema patients.  Also, you have to allow yourself time to recuperate, having two operations within a short period of time and to the extent you mention takes time for your body etc. to heal.  Hope this info helps!
Subject: RE: Upcoming RAI
Date: 05/03/2008
Oh, I just wanted to add I found out what causes the weakness etc. in the shoulder after this type of surgery.  Apparently, the surgeon has to stretch the muscle to gain access and what you are now experiencing is an injured muscle etc.  But as I mentioned, with physical therapy it should get better.
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