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Old 11-04-2008, 02:13 PM   #1
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Here is my story..

Hi! a newbie here to posting. I have been reading this board for about 1+ months. Didn't want to post til I had my whole story. I am 54 years young .

I had the right lobe thyroid removed last Tues Oct. 28 due to a single nodule that that was 2cm. The FNA showed benign and it was! BUT there was another small nodule behind this one that did not show up on the ultrasound and it is papillary size of 3mm.

I am scheduled to have the left side removed Nov. 25. My Dr. is setting me up with an endocrinologist. I will have the idodine thing after 6 weeks.

Thanks for any input.

 
Old 11-04-2008, 02:24 PM   #2
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Re: Here is my story..

So sorry about your diagnosis. If it helps, I had pappillary cancer about 3.5 years ago, and I'm just fine these days.

My recommendation to you is to make sure the doctor puts you on cytomel until 2 weeks prior to your rai (I went cold turkey, no meds, it was yucko), and check out the thyroid cancer web because it has a low iodine cookbook for the low iodine diet you will need about 2 weeks prior to RAI.

This is a shocking thing, but you will do great!

 
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Old 11-04-2008, 05:21 PM   #3
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Re: Here is my story..

Has your path report come in for the 2mm nodule? My daughter had a papillary nodule (1.5cm) removed from one lobe. Then she had the other lobe removed which was free from any cancer or nodules.

She wishes she had just followed the 2nd lobe with ultrasounds & exams. None of her 4 parathyroids were saved so she is still struggling with maintaining her calcium levels . Having to take such huge doses of the calcium have damaged her kidneys etc. So she has had to take an antihypertensive drug to protect her kidneys which decreases her already low b/p.

She has yet to get her thyroid hormone levels regulated after 9 months. Fam

 
Old 11-04-2008, 07:51 PM   #4
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Re: Here is my story..

The path report on the 2cm was benign. I guess because of my age the other lobe will be taken out because of the 3mm pap (this was hidden behind the larger nodule). My dr. is very precaucious (his wife has gone thru stuff with breast lumps) ....he is particular. Haven't had any bad vibes in his presence. Had no voice problems after surgery etc. He told me he did see the parathyr. I have not felt any symptoms of low calcium but I still have the ones on the left side, so far . I do take a lot of cal./vitD because I had a total hyster. in '03. Hope this answered your ??.

I truly hope your daughter can feel better....she will be in my thoughts and sending her good vibs.

 
Old 11-04-2008, 08:00 PM   #5
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Re: Here is my story..

Reece...did your hair fall out/get thinner? before RAI etc. I have thin hair and don't wish to loose more .

 
Old 11-04-2008, 09:08 PM   #6
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Re: Here is my story..

Remember that vitamins usually have iodine when you start your Prep for RAI. I wish you a successful 2nd surgery & pray that your parathyroid will successfully be be implanted.

My neighbor just had two parathyroids removed. Her surgeon didn't caution her well enough concerning low calcium. Make sure you find out what your calcium level is before leaving the hospital. If you feel numbness, tingling, or as my neighbor described a type of vibration anywhere on your body or all over your body. Contact your surgeon or DR. She had low calcium even though she was taking a lot of oral calcium. This can be dangerous.

Keep in touch with us so we can follow your progress. Fam

Last edited by famnd; 11-04-2008 at 09:16 PM.

 
Old 11-04-2008, 11:14 PM   #7
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Re: Here is my story..

Pinkglass- I hope all goes well with your second surgery and your treatments. What a surprise that must have been to you after the first surgery to learn of the cancer behind the known nodule.
I have a 3cm nodule, hasn't grown in a 3 mo. period. FNA-cancer not found. Thyroid cancer specialist said up to you to watch or take out. What I am curious about is what caused the dr. to recommend surgery on the 2 cm. was it growing rapidly? It was a good thing though that your doc is cautious as you said , considering what was found. You are really quite lucky , I think.
Will your surgery be soon? Keep us posted. Wishing you the best

 
Old 11-05-2008, 04:19 AM   #8
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Re: Here is my story..

Pink,

A couple of things---I did lose hair with the ups and downs of the thyroid medication, but after a few months of settled on the right levels, my hair started coming back in. Now it's as thick as ever (I always had thick hair).

Also, since you have only a teeny tiny cancer, and if it didn't spread to any lymph nodes (they can check in the next surgery) you should ask your endo. or whoever is managing your RAI about thyrogen---it's done all over the world, but in the US it's used only for follow up scans, but not rai treatment. In your case, you cancer seems pretty small (mine was 2.5cm with spread, so I wanted to do it the other way)---if they allow you to use the thyrogen, then you won't have to go without medication......just something you can ask about, since your cancer is on the small side.

 
Old 11-05-2008, 07:14 PM   #9
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Re: Here is my story..

thanks everyone so much for the replys.

Reece.. so cytomel can be taken upto 2 weeks before the RAI? and I will ask about the Thyrogen. Glad to hear about the hair regrowth.

Osteblast.. the dr. gave me an option of removal or leaving it. Did I make the right choice or what? At my age...anything growing in me that is not suppose to be there is coming out. We where not sure on the history of the 2cm nodule .. so he said if it was his wife/family, it would come out.

Fam.. the dr. mentioned that I would not leave the hospital til calcium level was ok. He's on it!

Love this board.... you all are my

what about supplements? I am into natural stuff.. does anyone take the coconut oil? or anything else to promote good health.

If there is ANYthing else that I should be aware of and it pops in your head .... Pleaseeee post it. I am kinda sad/confused that this turned around in another direction. Why?

Pink

Last edited by moderator2; 11-05-2008 at 07:33 PM. Reason: posted disallowed website(s)

 
Old 11-05-2008, 07:35 PM   #10
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Re: Here is my story..

My neighbor's calcium was fine when she left the hospital the first day post-op. It wasn't until the 2nd day that she started getting symptoms. You're lucky to have found such a good Dr.

You might want to look up old posts about getting through RAI. One person didn't realize that one can have non-iodized salt. Fam

 
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