# 2 months completion thyroidectomy - a new hurdle :/



## KarenB (Jul 19, 2013)

Hello everyone.

Apologies for not being here often recently - the only reliable internet access I have had has been at work, and it's so damn hard there to do anything other than deal with my crazy phone and inbox. Right now I am in a hotel room (why explained below) and I have free wifi here. Hooray!

For those who haven't been playing along - I had PT July 15, and TT on July 26 following positive pathology for follicular thyroid cancer.

Recovery has overall been pretty good. It has taken a little while, and it's still not perfect, but I am much better with my meds already (currently on 150mcg per day, and other than the 2pm slump, energy levels are more or less okay). I think I still tend to do too much, so I probably haven't given my body every single chance to get right. For instance, I ran a 10km fun run on the weekend, which I really didn't have to do. And I really, really felt it the next day. But I am still glad I did it. I have also had some odd choking stuff going on, but I can start massaging the scar this week (I am two months out) and I have been told this will help.

Anyway, I had RAI treatment this week. I have been on the LID for 2 weeks, and went in for RAI on Wednesday. I had a dose of 400GBp, which I gather is about a mid range dose. This morning (Friday Sydney time) I went in to do the full body scan, prior to discharge. All indications were I would get the scan, and be sent on my merry way, with various instructions on keeping my distance etc.

Firstly, I was still giving out a fairly high dose of radiation at 9am this morning. So much that they almost didn't send me home. They did in the end, but I had got a little worried about my husband and the poor cat in the mean time (we have a very small house!) so I booked into a hotel room, just for tonight.

Secondly, after the initial scan, they told me the chest area of the scan 'wasn't clear' so I would have to do it again. They gave me cookie to eat and some water to drink, just in case it was saliva etc in my esophagus. Did the scan again - same issue. So I had to do a third, longer scan, and they also ordered a CAT scan - at this point they had me a little worried.

After 45 minutes of waiting in a waiting room, a doctor finally came in to see me. She told me the cancer has metastasized in my sternum.

This was a total shock to me, and also my doctor. There was no lymph node involvement at all found during surgery.

I did the thing you shouldn't do - I googled it. And I read the plummeting 10 year survival prognosis and panicked. I have since spoken to my endo and I feel more confident because of my age and my overall health, but this is still very, very scary.

Apparently it's only small, and apparently it's only in one area. Apparently, too, the uptake of the RAI is good to the area. Apparently these are all good things.

I honestly don't really know what think. And how much I should be panicking. And it sucks, because I am stuck in this hotel room on my own, not knowing how my husband is doing with the news. If he's coping anywhere like I am, he's scared to death.

I know I can get through this, but tonight I am struggling to be as fierce as I was yesterday.

I had a conference call with my doctors tonight (yes, I have a whole team of them now) and we have decided that because I have had a good dose of RAI, and the uptake seems to be good, that we will give this 6 months to work and go in with another, higher dose in 6 months (800GBp). Only then, if it doesn't work, do we talk about scarier things like chemo.

I almost didn't post this, because I didn't want to be one of those bad news stories and freak everyone out. PLEASE - if you are reading this and have just been diagnosed, the chances of this stuff happening to you is so, so small. There are a TON of people on these boards who had either had nodules that were benign, or who have had all kinds of ThyCa and come through with no further complications, and now lead normal lives. So please take heart from that.

Right now, if you are out there and reading this, and have had metastases to other areas of the body and have come through it, I need to hear from you. I could do with any good news stories right now.


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## KeepOnGoing (Jan 2, 2013)

This is horrible news. I didn't want to leave you in your hotel room, all alone with that sort of news, so here I am, thinking of you and your husband.

Dr Google is a false friend at this time.

There are people on here who've had this sort of thing happen, and I'm sure they'll be along in a while to reassure you.

I'm sure you will feel better once you are home. Meanwhile, you're in my thoughts and prayers.


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## joplin1975 (Jul 21, 2011)

Oh, Karen...that's tough. I'm so sorry you are dealing with this.

Your doctors are right...RAI can take up to 6 months to really work. So, fortunately/unfortunately, the only thing you can do right now is wait. It sounds like the uptake is good, so you aren't non-avid.

You might find some good resources on the inspire.com thyroid cancer survivors forum. There are a good number of people there with more distant mets and they seem to be doing well.

Hang in there!


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## jenny v (May 6, 2012)

Holy cow, Karen, that's awful news.

I don't have any advice to add, but I wanted to let you know I'm thinking and praying for you and your husband. :hugs:


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## Octavia (Aug 1, 2011)

This is a bummer, but I agree with their approach. This is why they do the body scans on most of us...and I'm sure glad they did one for you.

Sending a hug... :hugs:


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## Eliza79 (Jul 23, 2013)

Karen, I know hearing from me is nowhere near as helpful as hearing from someone who has been through something similar, but I wanted you to know that I am thinking of you and hoping all will be well. I am so sorry you have another, totally unexpected hurdle to face and that you are having to digest the news on your own. Ugh.

It sounds like you are in excellent hands, though, and that your doctors plan to approach this aggressively, which is very good. This may seem unrelated, but I do want you to know that I have a close friend who who is only 37 who just went through breast cancer this year (and it had spread to her lymph nodes). She had chemo, both breasts/ovaries removed, followed by radiation, and is recovering well and, miraculously, has managed to maintain a positive attitude throughout. She works in the health care industry and knows that, due to her aggressive approach, her chances of living a long life despite everything are excellent. Keep this in mind as you face the unknown: not that there are people in worse situations--we all know that--but that there are people out there fighting cancer and winning!

Please keep us posted on your situation and take care of yourself, husband, and cat. I'm sure he could use a hug right now too.


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## melissafitz (May 5, 2013)

I'm sorry to hear about this news. I just want you to know I am thinking about you. I hope you'll be able to get in touch with some thyroid cancer survivors who can provide you with more information and support. Even though I haven't been through this, I wanted you to know I am thinking of you and sending you lots if positive thoughts.


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## Andros (Aug 26, 2009)

KarenB said:


> Hello everyone.
> 
> Apologies for not being here often recently - the only reliable internet access I have had has been at work, and it's so damn hard there to do anything other than deal with my crazy phone and inbox. Right now I am in a hotel room (why explained below) and I have free wifi here. Hooray!
> 
> ...


Karen; actually I am thanking the Good Lord right now this minute that they were so insistent and thorough on your behalf and found the area in your sternum.

Just think if they had not. Sounds like your team is really working for you and I like the "game plan" as well.

This is a rough patch but my gut feelings tell me you are going to get through this and live a very long life. Statistics show that people who have health issues do in fact take better care of themselves in the aftermath and go on to live long and very healthy quality lives!!

Keeping you in my prayers and do keep us informed.


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## KarenB (Jul 19, 2013)

Firstly, I don't think you can ever underestimate the impact total strangers can have on your mental state in a situation like this. When I was alone in my hotel room on Friday night, you messages were the last thing I read when I went to bed, and the first thing I read when I woke up. They definitely helped to mentally hold me together.

My husband and I are doing okay - I have my moments when I am down to my feet terrified, but every day I get a little more fierce, and I totally back myself to get through this. I am ignoring the official statistics and just forging my own path - I have a plan of attack and I am taking no prisoners.

Also, your comments about my doctors being on the right course of action are reassuring. I have a lot of trust in them, and I feel like they are being aggressive in their treatment, so I am happy about that.

Eliza - your comments in particular where heartening and gave be some perspective - lots of people are out there battling and beating cancer, and I have as good a chance as anyone to get through this.

Thank you all so much. I will hopefully have my internet sorted at home this week, so I should be around a little more.


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## KarenB (Jul 19, 2013)

Oh, and I am also very thankful for a very proactive GP - I originally went to see her with some swollen lymph glands, which are actually totally unrelated to my thyroid issues (turns out they were up because of my wisdom teeth). I had no thyroid symptoms at all.

Had she not been so thorough, we may not have found this for some years. I shudder to think.


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## Andros (Aug 26, 2009)

KarenB said:


> Oh, and I am also very thankful for a very proactive GP - I originally went to see her with some swollen lymph glands, which are actually totally unrelated to my thyroid issues (turns out they were up because of my wisdom teeth). I had no thyroid symptoms at all.
> 
> Had she not been so thorough, we may not have found this for some years. I shudder to think.


Yes, yes!!! Believe it or not; even though the world does not look that good to you right now, "You do have an angel on your shoulder!"

You surely do!!


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## kristiemarie (Oct 7, 2013)

Two words: Cancer sucks.

Wishing you the best in this.


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## Eliza79 (Jul 23, 2013)

How are you doing Karen? I've been thinking about you and hoping your experience with RAI went as well as possible.


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