The THYROID Thread

[mrsklamc]

I wonder if that just has to do with it being a rare variant? I'm so glad you got a good report!

 

[jennz]

Well today was my endo visit. Praise God I got such a good report.

She said, the sonogram was just great and the remnant was gone, so the RAI killed it all.

The thyroglobulin is undetectable and the TSH is about 0.1.

She is keeping me on the high level of synthroid for at least another year so she said "thats where we like to have it with all our thy ca pts". So its a little hyper me and maybe some heeart palpatations.I havent really noticed those that much.

She said she is sending the rad onc. an e mail and feels I dont need a 1 year scan. Hmm, I thought that was like mandatory or required? I didnt want to get into that with her as I think the rad. onc. has the final say, but here you have a cancer team in the whole hosp. system, the surgeon, rad. onc. and endo together etc. So she also mentioned about just getting the 2 thyrogen shots and getting a blood test. I dont know if that is another option or will be done in addition to the probable scan etc.

She also said that if there was a recurrence it would likely occur in the first year post op? Hmm, has anyone heard of that comment before? Even my surgeon never said that to me etc.

Great news! Thanks for the update!

I have never heard that about recurrence, I've always been told that it can come back any time.

I thought you get the thyrogen shots and then the scan, and the thyrogen is so you don't have to go off your meds. Maybe she means she'll do that and you don't have to go off of it?

Also, I know they like to keep cancer patients slightly hyper, and I've been there now for over 15 years. Your comment about heart palpitations scared me a little (sorry ). Just know that you should not be having those, if you do your meds need to come down a little. My TSH is always below .1. I do remember one time when my meds were being adjusted and I was hyper it felt like my heart was coming out of my chest...very scary!!

Okay I'm done with my overprotectiveness.

 

[Christine]

She said, the sonogram was just great and the remnant was gone, so the RAI killed it all.

The thyroglobulin is undetectable and the TSH is about 0.1.

GREAT news!

She is keeping me on the high level of synthroid for at least another year so she said "thats where we like to have it with all our thy ca pts". So its a little hyper me and maybe some heeart palpatations.I havent really noticed those that much.

That's pretty standard. If you find you get heart palps you may need to go on a beta blocker. They really really like thyca patients to be very suppressed and they often have to use a beta blocker to get that balance between suppression and not having your heart go nuts.

She said she is sending the rad onc. an e mail and feels I dont need a 1 year scan. Hmm, I thought that was like mandatory or required? I didnt want to get into that with her as I think the rad. onc. has the final say, but here you have a cancer team in the whole hosp. system, the surgeon, rad. onc. and endo together etc. So she also mentioned about just getting the 2 thyrogen shots and getting a blood test.

From what I am hearing, after you are deemed "clean" the new way to monitor you is with Thyrogen shots and then having your blood drawn at a specific point after the shot to check for your Tg. Tg is the most sensitive marker. They are finding that the need to give your the extra radiation as well as scan you is not really necessary anymore.

She also said that if there was a recurrence it would likely occur in the first year post op? Hmm, has anyone heard of that comment before? Even my surgeon never said that to me etc.

With a more aggressive form of thyroid cancer this would be true. This is actually also true with the more latent forms. Statiscally, your recurrence will *probably* show up sooner rather than later. However, it can recur at any time.

 

[mrsklamc]

I have noticed that my heart races during the night if I 'splurge' and have a pepsi in the evening.

 

[luvmarypoppins]

Bless you for all your insight and information christine (and OT) I hope all your appliance problems are getting under control.

Hmm, so if I get the 2 shots, I am wodering if I would have to still do the diet? Oh how I do not enjoy that diet!! With passover coming up I was thinking of snagging a box of matzoh for the diet since its easier to find around this time and I am not a big fan of oatmeal, at least that kind, cookies ok etc.

And with your comments about the scan and not needing the extra radiation, it got me thinking, I posted before about my rad onc. doing some kind of research about radiation and the scan etc. I think she was trying to see if a 2 day rad. precaution after the tracer rad. was sufficient etc. Hmm, hopefully she may have drawn the same conclusions. I know she has written a chapter in a thy ca book before etc. Well I ee her April 29, so I guess we will just see what she has to say. I think before she said, oh I will give you a 1 year scan and then decide what to do with you etc. Hmm, maybe she will change her mind?

Also I know it can come back at anytime, its always in the back of my mind. I am still trying to adjust and deal with that mentally etc. Its a fine line etc. I just dont want to be so overconfident etc. I am glad I have alot of faith because that really helps me etc.

 

[Christine]

Bless you for all your insight and information christine (and OT) I hope all your appliance problems are getting under control.

The appliances were delivered today. The fridge was a tad too tall (the dimensions Sears gave were INCORRECT) so my husband had to do a little cutting on the upper cabinet. It's always something.

Hmm, so if I get the 2 shots, I am wodering if I would have to still do the diet? Oh how I do not enjoy that diet!!

No diet required if you are doing the "stimulated" TG testing which is what they are calling it. The diet is only necessary if you are ingesting RAI.

And with your comments about the scan and not needing the extra radiation, it got me thinking, I posted before about my rad onc. doing some kind of research about radiation and the scan etc. I think she was trying to see if a 2 day rad. precaution after the tracer rad. was sufficient etc. Hmm, hopefully she may have drawn the same conclusions. I know she has written a chapter in a thy ca book before etc. Well I ee her April 29, so I guess we will just see what she has to say. I think before she said, oh I will give you a 1 year scan and then decide what to do with you etc. Hmm, maybe she will change her mind?

Well, the thinking is changing on the followup scans. Once they are comfortable with your uptake and pictures (or lack thereof) they are realizing that the thyroglobulin (Tg) is the more sensitive, indicative test.

 

[mrsklamc]

Just wondered..how long have you guys had to go on the LID for your follow up scans? I'm sure it varies by dr. but I'm just curious.

 

[Christine]

Just wondered..how long have you guys had to go on the LID for your follow up scans? I'm sure it varies by dr. but I'm just curious.

Most doctors will tell you to do it for 2 weeks.

The thyroid oncologist who is the LID's biggest supporter and really drove home that physicians should require this has said that if you are EXCELLENT and do the diet perfectly you only need to be on it for 7 days; however, he said that most patients make so many mistakes the first few days that he directs 2 weeks so that by the second week, you've got it down.

 

[luvmarypoppins]

O.K. I am not bragging, but I did the diet perfectly. My dh even told the hosp. dietician that I was obsessed. O.K. I must have called her like 7 times at least during the time before it started. I was actually suppose to meet her in person before the diet started but it didnt work out.

My rad. onc. uses nih, thyca and her own combined. I cant even drink city water, only distilled.

I of course would like to just have the 2 shots and just the blood test and no LID and scan. I have my appt. with the rad. onc. on april 29 so we will see what she says.

Micayla I knew I couldnt believe how long they made you go on the LID before the RAI and after too.

Also when I stayed overnight in the hosp. after the rai they brought me salad but it had roast beef from the deli on it (boards head). I didnt even think that was allowed. I want to ask the dietician about that this time. Maybe since it was my last day etc?

 

[mrsklamc]

It was a long 3 weeks. I was just thinking I would be proactive about planning my menu so I can think about it the next few months. What made it hard was the weekend I had planned to make all my meal plans was when the feeling of really being hypo hit me all at once. My DH was amazing, but it was still harder than it probably had to be.

I am a chocolate lover so the no-bake cookies with cocoa powder and unsalted PB were a lifesaver!

 

[luvmarypoppins]

I dont even think I could have cocoa powder, I know they said no chocolate type stuff, nothing etc. because we dont know how its processed.

Well Dh and I are going to disney May 18, and I see her the 29th of April , so I figure I better get on the diet and get out of here etc. I know I will just be so sick from those shots again.

I know what I am doing as far as diet. I dont have a food processor etc. My plan is to just basically have an orange or banana and tea for breakfast. Maybe some matzoh and jelly. I hate oatmeal but could break down a day or two and try it I guess.

Lunch is most likely salad and chicken. I cooked a big bunch of basmati rice and no yolk noodles, that is allowed but not much they said. I just made a pot roast and dvided it up for 4 meals, it was lb of beef etc. The chicken I made stuff like with grilled pineapple and then with orange marmalade on it. as chinese is big around here. I think this time I am going try to do something with tomatoes. It wont be spaghetti sauce but something we will see etc. and I have done the matzoh and peanut butter sandhich. My ds laughed because it was dripping all over the place. I also used birdseye steamfresh veg, which were allowed, not the sauced ones. and edys sorbet, rasberry was o.k. I read the label for food dye etc. I also bought the little packs of raisins and craisins just to think I actually had a snack and I was having something special. Gotta love cancer!! I think I did a pork chop with maple syrup, pecans and sweet potatoe. That was probably easter and I cooked them a ham etc.

I usually dont cook for the family during those 2 weeks much unless its something that resembles mine. Its too torturous psychologically for me to smell it and see it etc. and know I cant have it. I stay in the living room if they are eating in the kitchen etc.

 

[mrsklamc]

The endo I no longer see literally told me nothing besides 'go to the thyca website and use the cookbook there;' It includes cocoa powder so I went ahead and used it.It did NOT include the steamfresh veggies but maybe I will use those next time.

 

[Christine]

The endo I no longer see literally told me nothing besides 'go to the thyca website and use the cookbook there;' It includes cocoa powder so I went ahead and used it.It did NOT include the steamfresh veggies but maybe I will use those next time.

I'm not sure why cocoa would be a problem. I know that chocolate, for the most part is, because much of it is made with dairy, milkfat solids, and various other add-ins. I know that some dark chocolate used to be okay if it was really pure. Cocoa is fine as far as I was ever told.

 

[luvmarypoppins]

Anyone have any info or insight about this. Another poster said that they are saying there is a link between thyroid cancer and uterine cancer, just wondering? I dont enjoy going to any doctors and that is one I have been putting off for a really long time. My endo told me to go for a check up etc.

I also heard another poster say there is a link between thyroid and breast cancer. I didnt have breast cancer, but I have had a huge non cancerous tumor removed from my breast when I was in my 20s.

Anyone??

 

[mrsklamc]

My doctor said a slightly increased risk of other types of cancer is associated with the radiation treatment, but that there's no way to know if following cancers are caused by the radiation treatment, or if there was earlier radiation exposure that caused the thyroid cancer AND following cancers.

Basically, just take the best care of yourself that you can and deal with things as they come up!

 

[Christine]

My doctor said a slightly increased risk of other types of cancer is associated with the radiation treatment, but that there's no way to know if following cancers are caused by the radiation treatment, or if there was earlier radiation exposure that caused the thyroid cancer AND following cancers.

Basically, just take the best care of yourself that you can and deal with things as they come up!

Yep, basically that is what I heard. My doctor told me that there was no link between having thyroid cancer and an increased risk of any other type; however, the RAI might increase your risk for other cancers.

 

[mrsklamc]

Good evening ladies. I have something I just HAD to share...

I was flipping through some recipe books by Todd Wilbur ( http://www.topsecretrecipes.com/ ) and it has recipes for things like french's mustard, KC masterpiece BBQ, etc. Now French's mustard I often get for a few cents after sales and coupons so my first thought was "Why would someone bother" and I immediately thought "UNLESS THEY WERE ON THE LID!"

Now the KC masterpiece has molasses in it and I wasn't personally confident enough about the molasses distinctions they made to use any, but if you were it might add some nice variety to your LID.

 

[cinmell]

Has anyone here had eyelid surgery due to the eyelid not closing all the way from Grave's? I'm at the point where they will do the surgery but I'm pretty hesitant. My eye bulges out thanks to the graves and it just looks so much bigger than the other eye and there is irritation on the eye.

The ocular plastic surgeon said she would not do the pinching of the eyelid together b/c the lid is too wide open so it wouldn't look right. She explained they would make an incision on the lid (you wouldn't notice the scar b/c it would be on the eyelid creases) and that helps drop the lid and/or eye muscle down.

I'm really curious to hear if anyone has had this procedure done and if you were happy with it. I've never had any eye procedures and I'm really nervous!

 

[luvmarypoppins]

Christine, wanted to say I hope your ankle is feeling better. I didnt read the whole thread, just quickly glanced at it. Hope you get the treatment that you need to help you.

Well a week from tomm. I am seeing the rad. onc. I must say that I think she is probably going to do the diet and the scan, so I am hoping for the best (just the thyrogen shots and blood test), but preparing for the worst, (diet,shots and scan). I am so pigging out right now on chocolate, pasta etc. I think its an emotional thing etc. I need to overload now so I can put up with the withdrawl later.

Also I am telling her I am leaving for Disney on May 18, so we have a limited time frame here etc. I need to start the diet on April 30 and then get the scan on the 15th, so I can be radioactive for the 2 days before I get on the airplane. If that doesnt work into her plans, then I will tell her just wait till I get back etc.

I dot even know if she will read the e mail that the endo was sending to her. I do know she read the one from the surgeon when he was telling her to go and give me the radiation even with my draining stomach wound etc.

So is there anything I should ask her when I go, like why is she chosing one over the other? It seems this hospital just has a "protocol" for everything. I learned that in the ICU. Its like nothing is suppose to go out of their protocol box, like me refusing heparin etc. Refusing the pic line etc.

Since my cancer is so rare and agressive I just want the best treatment, but since its so rare I feel like I am more of a guinea pig etc.

So if anyone has any insight I am listening, TIA.

 

[Christine]

Christine, wanted to say I hope your ankle is feeling better. I didnt read the whole thread, just quickly glanced at it. Hope you get the treatment that you need to help you.

Thanks for asking. It's just okay. I had an MRI. I have tenosynovitis of the posterior tibial tendonitis. Most people end up getting surgery. I'm back in my walking cast trying to bring the inflammation down. Grrrrr....

So is there anything I should ask her when I go, like why is she chosing one over the other? It seems this hospital just has a "protocol" for everything. I learned that in the ICU. Its like nothing is suppose to go out of their protocol box, like me refusing heparin etc. Refusing the pic line etc.

Do you mean asking her why she might be choosing Thyrogen and bloodwork over Thyrogen and a scan with bloodwork?

I always ask why they are making the choice they do and what their rationale is and why they wouldn't choose the other option. I'm sure my doctors LOVE me.