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  #1   ^
Old Fri, May-27-05, 08:42
Paulie-M's Avatar
Paulie-M Paulie-M is offline
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Plan: My Fitness Pal
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Location: Newcastle upon Tyne,U K
Post Thyroid Cancer

Having just been told that I have thyroid cancer, I would be interested in hearing from any other forum members who have had this and also know what treatment you received.

Briefly, I hve had thyroid problems for the past 30 years. I had my first surgery when I was 16 to remove nodules. I was told recently that if they were doing my operation today, they would have done a full tyroidectomy and not just taken a piece of the thyroid away. Since 1975, I have had a further 4 operations. I now have no thyroid left, but still make "abnormal nodules"

Due to their position, I have been advised to try radioactive iodine treatment initially and if that isn't successful (and in the past it hasn't been) to try MIBG. If all else fails, they will do surgery, but it is potentially hazardous due to the fact that I have been operated on so many times before and the close proximity to the vocal chords and voicebox.

I would be interested in hearing from anyone who is in or has been in a similar situation.
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  #2   ^
Old Mon, Jun-06-05, 15:44
Paulie-M's Avatar
Paulie-M Paulie-M is offline
Champagne Paulie
Posts: 13,589
 
Plan: My Fitness Pal
Stats: 156.2/123.8/120 Female 5 ft 4 ins
BF:Got some, thanks
Progress: 90%
Location: Newcastle upon Tyne,U K
Post

It was my appointment at the Oncology Department today and this is what happened.

My appointment was at 11am and we actually arrived 15 minutes early (unusual for me ) Derek and I were shown into a room and had to wait a short time before a doctor came in. She again went through what Prof Lennard had said, just to make sure I knew why I had been referred to them. She then explained what they would do.

On July 12th I have to stop taking my thyroxine. On July 13th, I have to start taking T3 tablets which I have to take 3 times a day. This does the job of the thyroxine, but it is much shorter lasting whic is why you have to take it 3 times daily. I take the T3 for two weeks and then stop. I then wait until August 12th (taking no medication) and go to the hospital for a radioactive iodine capsule. The following day I have a neck scan (which checks to see how the radioactivity is being taken up by the thyroid tissue). The following day, I have a whole body scan. Depending on the results of the rests and wheter the cancer cells are reacting to te radioactive iodine, I will then go into hospital for about 3 days for some radioactive iodine doses. If I have the treatment, I will be radioactive for a few days and the hospital staff can only have minimal contact with me Visitors have to sit at the other end of the room and not step over a line on the floor. (Just like reporting at immigration when you get off a flight) If, however the radioactive iodine doesn't show that it's doing its job, I will then be given another form of radioactivity.

I did also speak to a girl from the Butterfly Trust swho has had the treatment. She says that one of the downsides is that when you stop taking the thyroxine and T3 you become unbelievingly tired. Still, it has to be done to have the test.




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  #3   ^
Old Mon, Jun-06-05, 15:51
Nancy LC's Avatar
Nancy LC Nancy LC is offline
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Plan: DDF
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I can't speak to the cancer part, but I have had the RAI treatment for Graves disease. I went to visit a friend who had a geiger counter at work... we played hide-and-seek with me hiding and them looking for me with the geiger counter. They said the chair I sat in was radioactive until the next day.

Make sure that when your cancer treatment is over, you get on a good thyroid replacement treatment. Most doctors are incompetent at this.... including endocrinologists.

Have you been to thyroid.about.com? Its a good site.
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  #4   ^
Old Mon, Jun-06-05, 15:54
Paulie-M's Avatar
Paulie-M Paulie-M is offline
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Plan: My Fitness Pal
Stats: 156.2/123.8/120 Female 5 ft 4 ins
BF:Got some, thanks
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Location: Newcastle upon Tyne,U K
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Thanks nancy, I'll check it out when I get a minute.
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  #5   ^
Old Fri, Jul-01-05, 19:34
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SarahA523 SarahA523 is offline
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I had thyroid cancer about 3ys ago and all I could do was cry but know I am cancer free.I have to body scans every so often and go on salt-free diets.But it gets better in time.
Sandy
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  #6   ^
Old Fri, Jul-01-05, 20:04
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Dodger Dodger is offline
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There is a person with thyroid cancer posting at http://forums.roadbikereview.com/sh...t=iodine+cancer

He is also undergoing the same test.
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  #7   ^
Old Sat, Jul-02-05, 02:47
Paulie-M's Avatar
Paulie-M Paulie-M is offline
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Plan: My Fitness Pal
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Location: Newcastle upon Tyne,U K
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Mike and Sarah thanks for the posts. It was interesting reading about the guy on the cycling forum. I've been told that I will feel like cr*p that seems to confirm it Still, hopefully it will be a means to an end.

Thanks again.
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  #8   ^
Old Fri, Jul-22-05, 09:53
meau17 meau17 is offline
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I'm new to this board, but this is the first place I have seen people discuss all of the important info. I'm going through the thyroid nodule tests-for the past 8 months. I've had blood tests, ultrasounds and a biopsy. We're still testing and before I have another biopsy my doc is sending me in for an uptake and scan-I'm curious what if any experiences you have had. Did that radioactive substance have any side effects?
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  #9   ^
Old Fri, Jul-22-05, 11:06
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Nancy LC Nancy LC is offline
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Quote:
Did that radioactive substance have any side effects?

I'd say the biggest side effect is likely to be strip searches when you go out into public and set off one of those super-sensitive radiation moniters they have out there!
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  #10   ^
Old Tue, Aug-02-05, 10:41
Paulie-M's Avatar
Paulie-M Paulie-M is offline
Champagne Paulie
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Plan: My Fitness Pal
Stats: 156.2/123.8/120 Female 5 ft 4 ins
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Location: Newcastle upon Tyne,U K
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Quote:
Originally Posted by Meau17
Did that radioactive substance have any side effects?


I've had the uptake tests done a couple of times previously and they haven't had any adverse side-effects. The first time I was injected with the iodine and the second time I got it in a drink. I hhad to eat a reduced iodine diet for a few days before the tests.

This time, I'll be gettng a radioactive capsule! lets hope I don't start glowing green
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  #11   ^
Old Fri, Aug-12-05, 03:58
Paulie-M's Avatar
Paulie-M Paulie-M is offline
Champagne Paulie
Posts: 13,589
 
Plan: My Fitness Pal
Stats: 156.2/123.8/120 Female 5 ft 4 ins
BF:Got some, thanks
Progress: 90%
Location: Newcastle upon Tyne,U K
Smile

I had my radioactive iodine capsule on Wednesday which I had to swallow whole with a little water. I wasn't allowed to eat or drink anything for 2 hours afterwards. Why is it that when you are told that you are suddenly ravenous and really thirsty? My thyroid (or what is left of it) probably looks something like this now.




Pretty eh?

I had a neck scan yesterday morning and had to go back again this morning for a whole body scan. The boffins will now analyse the results and I should get a call on Monday afternoon telling me if I am suitable for treatment. If I am, I will go into hospital on August 19th for about 3 days where I will get big doses of the radioactive isotope (R131).

Catch you all later.

Hugs

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  #12   ^
Old Mon, Aug-15-05, 04:21
Paulie-M's Avatar
Paulie-M Paulie-M is offline
Champagne Paulie
Posts: 13,589
 
Plan: My Fitness Pal
Stats: 156.2/123.8/120 Female 5 ft 4 ins
BF:Got some, thanks
Progress: 90%
Location: Newcastle upon Tyne,U K
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The hospital rang me at 9.30am this morning. They have looked at my scans and decided that I do not have to go in for treatment on Friday. they didn't exactly say that I wasn't suitable, just that the doctor wanted to review my file and discuss it with some others In the meantime, I can resume my T4 (Thyroxine) and they will get back to me in " a few weeks for further discussion" Talk about being left up in the air and not knowing what's happening. This has left me with more questions than answers.

I know I have a bit of thyroid tissue left and that what I have is quite rare and not always suitable for radioactive iodine treatment but they haven't actually ruled it out! I am waiting for my GP to call me back and see if she can find out what's happening at the hospital or offer any suggestions. she has had thyroid cancer herself, so she knows quite a bit about how they do things. I don't really want to be waiting for weeks on end wondering what they are going to do. I feel like I'm back at square one!


I'll be back later when I've had a chance to run things through in my mind a bit.

Hugs
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  #13   ^
Old Tue, Aug-16-05, 07:57
meau17 meau17 is offline
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Thanks for all of your input. It is amazing to me how many tests they run and how long it takes to get an answer.

Glad to know that others have weathered the storm and come out on top.
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  #14   ^
Old Sun, Aug-28-05, 13:37
Paulie-M's Avatar
Paulie-M Paulie-M is offline
Champagne Paulie
Posts: 13,589
 
Plan: My Fitness Pal
Stats: 156.2/123.8/120 Female 5 ft 4 ins
BF:Got some, thanks
Progress: 90%
Location: Newcastle upon Tyne,U K
Post

Just an update for you all.

As per my last entry, you know I wasn't able to have the R131 treatment but wasn't given any explanation. I rang my GP who suggested that I contacted the Cancer Centre and asked them for some more info as it wasn't fair to have to wait weeks to find out what was happening. I spoke to a doctor there who said he would check my file and get back to me. he rang me back shortly afterwards and said that they were recommending surgery and were writing to my Prof at the other hospital

Two days later, I rang the Prof's secretary to see if anything had been received. She said it hadn't but she would ask the Prof to review my file and get back to us. (Why one doctor can't email the other I don't know, instead they use snail mail). I then got a call from my GP asking if I'd heard anything. She had had a letter from the hospital saying that I wasn't suitable for the R131 treatment at this time because I had too much thyroid tissue. This was a surprise to both of us as previously I'd been told I hardly had any left. She did say it was possible that the thyroid had been generating more tissue itself (sneaky bugger!). I am to have surgery and then have the R131 treatment. Unfortunately I'll have to go through the whole withdrawal process again when the time comes I also got a call from the Prof's secretary who read me a letter out over the phone that was going to be sent out to me. I have to go in on Tuesday and see the Prof to discuss the surgery. I think this will be my 6th thyroid op. I know he didn't want to do surgery initially due to the risks, but maybe now there is more tissue to work on it won't be as hazardous.

Once I know more on Tuesday, I'll post again.
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  #15   ^
Old Sun, Aug-28-05, 13:47
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MissScruff MissScruff is offline
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My prayers are with you as you go through this.
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