# Me and Charlie Brown...



## I DClaire

I got very unsettling news today. Even though my surgeon says he got every bit of my cancer, that it was the size and shape of a pencil eraser, odds are my endocrinologist is still going to insist on radioactive iodine treatment.​
This is probably the last Christmas my family will have with my 90-year old mother. I cannot imagine right now how I'll manage.​
I won't know for sure until November 18 but apparently this is standard procedure with my doctor. I've been so happy, feeling so blessed that surely the surgeon's recommendation would be the final word - I never expected this.​


----------



## Octavia

Well, pooh. Hopefully it will be a small dose.

If you feel really strongly about it, perhaps you could oh-so-respectfully decline, or at least press the doctor to really justify it. Then again, it might just be a good safety measure that you'll appreciate down the road. ???


----------



## Alicia123

Im so sorry. Im new to all of this, but is there any way you can put it off until the new year? I dont know how all of that stuff works. Keep your chin up. Im thinking of you.


----------



## Octavia

Alicia123 said:


> Im so sorry. Im new to all of this, but is there any way you can put it off until the new year? I dont know how all of that stuff works. Keep your chin up. Im thinking of you.


Excellent point!

Your appointment is in mid-November. You'd have to stop your meds for a few weeks prior to RAI. It's totally unrealistic to isolate yourself during holiday season. I vote for 2012 if you have to get RAI.


----------



## joplin1975

I was just gonna suggest waiting. Put it off until the new year & I'll bet you'll be fine. FWIW, I think it's really smart to do it...but its not an immediate must do now kind of a thing.


----------



## webster2

I agree. Enjoy the holidays, and think about it in 2012.


----------



## joplin1975

Also, I just wanted to add a couple of things (in the event that your docs are pushing this hard):

1) the way it shook out with my RAI was that on a Tuesday, I was given a "tracer" dose and on Friday I was given my baseline scan. If that scan didn't show any activity in the neck area, I was free to go and didn't have to do the therapy dose. Of course my baseline scan was a hot mess, but given the small amount of cancer your surgeon found, you very may well have a different experience and may be "released" without a therapy dose...no isolation for you.

2) Restrictions are, as I understand it, based upon the amount of radioactive iodine given. If you DO need it, it sounds like its likely you'll be given a small dose and isolation restrictions would be minimal. For example, even though I was given 99 millicurries, I was able to be within three feet of other people for eight hours a day starting at day four after the dose. I would imagine it would be even more lenient with a smaller dose. So, my guess is you'd be able to hang out with everyone during the day over the holidays and just need to isolate at night.

Regardless, pushing it to 2012 would be the preferred option...

Good luck!!


----------



## nodakmom

I concur, see if you can get it done after the holidays. Unless you have an aggressive form a couple weeks extra shouldn't be a big deal.


----------



## Andros

I DClaire said:


> I got very unsettling news today. Even though my surgeon says he got every bit of my cancer, that it was the size and shape of a pencil eraser, odds are my endocrinologist is still going to insist on radioactive iodine treatment.​
> This is probably the last Christmas my family will have with my 90-year old mother. I cannot imagine right now how I'll manage.​
> I won't know for sure until November 18 but apparently this is standard procedure with my doctor. I've been so happy, feeling so blessed that surely the surgeon's recommendation would be the final word - I never expected this.​


Ask your doc to put you on Cytomel (T3) which you would stop one week prior.


----------



## Catnap

I think we're in a similar situation. I had TT and even neck dissection. My tumor was only 1.1cm with no evidence of spread, but the protocol I'm told is rai once it's over 1cm. I'm a bit torn. My FNA had shown suspicious for papillary but also mentioned medullary, I was so happy it was just papillary I would accept any dose of rai to be rid of thus junk! But at the same time I have 2 young kids so finding a way to isolate myself will be hard and generally tough on all. 
Have you discussed thyrogen (right word?) so you dont go hypo and could be done by Xmas? That's my plan/hope but also if they are saying they got it all surely waiting until next year is not putting you at any risk?


----------



## I DClaire

Catnap said:


> I think we're in a similar situation. I had TT and even neck dissection. My tumor was only 1.1cm with no evidence of spread, but the protocol I'm told is rai once it's over 1cm. I'm a bit torn. My FNA had shown suspicious for papillary but also mentioned medullary, I was so happy it was just papillary I would accept any dose of rai to be rid of thus junk! But at the same time I have 2 young kids so finding a way to isolate myself will be hard and generally tough on all.
> Have you discussed thyrogen (right word?) so you dont go hypo and could be done by Xmas? That's my plan/hope but also if they are saying they got it all surely waiting until next year is not putting you at any risk?


My surgeon never told me anything except my cancer was the size and shape of a pencil eraser. Twice I've seen him pick up a pencil and use it to describe my cancer.

I feel so overwhelmed right now (my mother suffered a bad fall last weekend and I have other family problems) that I don't know what to think...and I'm kinda' sensing that I'm drifting into total denial. I do that sometimes - when I get more on my plate than I can manage, I'll disconnect from some of it.

I absolutely cannot and will not believe I'm at any risk. If y'all met my surgeon, you'd understand - I just do not believe, even now, that he'd have said I didn't need any further treatment for cancer unless he was positive. His reputation is top notch, he even takes the high risk/complicated cases other endocrine surgeons don't want. I have so much faith in him.


----------



## I DClaire

I've been whining to my family off and on for years that we do the exact same thing every Christmas - I mean right down to cooking the same foods, playing the same games, going to the same places. I'm always wanting to do something different, everybody else likes things the way they've always been.

Maybe I will schedule my radioactive iodine treatment during Christmas. Who's to say sipping "HOT" apple cider with a HAZ-MAT team might not be fun??? arty0036:Who needs lights when they glow themselves? glow


----------



## nodakmom

I DClaire said:


> I've been whining to my family off and on for years that we do the exact same thing every Christmas - I mean right down to cooking the same foods, playing the same games, going to the same places. I'm always wanting to do something different, everybody else likes things the way they've always been.
> 
> Maybe I will schedule my radioactive iodine treatment during Christmas. Who's to say sipping "HOT" apple cider with a HAZ-MAT team might not be fun??? arty0036:Who needs lights when they glow themselves? glow


You can be your own christmas lights! lol :tongue0013:


----------



## joplin1975

I DClaire said:


> I absolutely cannot and will not believe I'm at any risk. If y'all met my surgeon, you'd understand - I just do not believe, even now, that he'd have said I didn't need any further treatment for cancer unless he was positive. His reputation is top notch, he even takes the high risk/complicated cases other endocrine surgeons don't want. I have so much faith in him.


I get it. I do. But I just want to gently encourage you to make sure you follow up on this. The thing is, you just can't tell from looks alone. You just can't -- no matter how good you are.

My surgeon -- a really great guy, highly recommended, very experienced etc -- told us after surgery that the right side of my thyroid looked good to him and he expected a negative path report on that side (we knew Lefty was a hot mess). Turns out, there were two microscopic nodules of cancer on Righty.

Surgeon also said he took ten lymph nodes but didn't see much that concerned him. Turns out, three had microscopic amounts of cancer in the -- two on the left side and one on the right.

Yes, you can wait -- or, you can have "hot" apple cider!!! -- but don't brush it off. This is so easily treatable...it dos not in anyway reflect poorly on your surgeon. It just means he doesn't have microscopic vision.


----------



## I DClaire

You're right, joplin1975. In my heart I know everyone's interest is for my welfare and I've decided I'll do whatever is recommended whenever they want to proceed. If it were not for one huge concern, I wouldn't really be upset. I just cannot imagine what will happen if I'm in the middle of this and my mother either gets hospitalized _or worse_. You can't imagine how frail she is - everytime our phone rings I can't catch a breath until I know it's not another crisis.

What happens if I'm in isolation and Mother gets in serious trouble or, Heaven forbid, dies?

I just can't think my way through it. I want to think I'll do whatever I'm told to do, hoping for the best...but things are so bad I just can't really be comfortable anyway I turn.


----------



## I DClaire

Joplin1975, I just noticed (and remembered) you had your RAI the same day I had my surgery. How long were you totally isolated?


----------



## joplin1975

I DClaire said:


> Joplin1975, I just noticed (and remembered) you had your RAI the same day I had my surgery. How long were you totally isolated?


Well, technically speaking, I never was totally isolated. 

NY is a jacked up state, so if I received more than 100 millicurries of RAI, I would have been totally isolated in the hospital. Instead, I was given 99 (or 98...I swear they said 99, but my bill says 98...either, just under 100) millicurries which meant I had "restrictions" or had to self-isolate at home.

Even then, it wasn't a total isolation. It went something like this:

*For the first three days, I could not spend more than three hours (within a 24 hour period) within three feet of someone. I worked from home, but at night my husband and I hung out and wacthed TV on the same couch...we just made sure we sat on opposite ends. I was out & about in the main living area of our house and ran quick errands during the day.

*For the next seven days, I could not spend more than 8 hours (within a 24 hour period) within three feet of someone. I stilled worked at home because it was easier (see additional restrictions below), but when you think about it, that's a long time to be very close to someone. Same thing as above, I was in the main living areas of the house and ran errands etc.

*For ten days, I had to sleep alone.

*Most of the radiation gets flushed out of your system via bodily fluids. I used our guest bathroom for the week, but that wasn't required. They just asked you flushed the toilet twice after each use, washed your hands twice, rinsed down the shower well after each use etc.

*I used disposable cutlery for the first three days and then switched over to our regular stuff, but all of the normal silverware, dishes, and cups I used all had to go through the dishwasher (no hand washing). I still prepared food for everyone, but I was very careful not to, say, taste the sauce with the spoon I was using to stir the pot with, etc.

*Once all restrictions were lifted, they asked me to wash all bedding, towels, and clothing in separate loads and not to "mix" them in with other household laundry.

*They asked me to avoid contact with pregnant women and children. (I'm honestly not sure what they'd say about seriously ill/fragile folks.)

It was more of an annoyance than anything and certainly wasn't full-blown isolation. I would guess (and it's just a guess) that you'd be given a lower dose, if you have to do it at all, and your restrictions might be shorter in time and/or less severe.


----------



## I DClaire

I talked to a neighbor this morning who had TT 7 years ago and she said they found a malignant tumor the size of a "golf ball". She laughed and said maybe it was another size ball but it was big...and she had never had one symptom. She discovered how swollen her thyroid was while applying moisturizer.

She had surgery and then a "precautionary" RAI treatment that only lasted 72 hours at home. She said she wasn't hospitalized because there were no small children in her home.

I've got to think if that was standard treatment for a large cancer 7 years ago, whatever is recommended for one the size of a pencil eraser can't be too bad.

I'm feeling more optimistic - hoping this may be yet another situation where my doctors are saying different things. I got the results of labs done this week that included everything EXCEPT thyroid levels and the only two problems noted were my overall cholesterol is slightly elevated and my vitamin D level is still low. My vitamin D level was the highest its been in three years (24 when it should be 30) but earlier this summer it was 11.

I want so desperately to stop fixating on my health and start thinking about other things!!!


----------



## Catnap

Are you having RAI? Sorry if you are discussing in another thread... I'm just curious as our tumors were similar size, mine was 1.4cm on US but turned out to be only 1.1cm. I have another consultation tomorrow to discuss whether I need RAI... Surgeon said talk to endo, endo said talk to nuclear medicine lady...so hard to know what's best for us when the experts can't agree!!!


----------



## I DClaire

Catnap said:


> Are you having RAI? Sorry if you are discussing in another thread... I'm just curious as our tumors were similar size, mine was 1.4cm on US but turned out to be only 1.1cm. I have another consultation tomorrow to discuss whether I need RAI... Surgeon said talk to endo, endo said talk to nuclear medicine lady...so hard to know what's best for us when the experts can't agree!!!


I have been going under the belief that my little cancer was 1.5 cm. Yesterday I got a copy of the actual pathology report and discovered it was only 1.5 mm. I'm thinking if 1.5 cm is the cut-off number, I MAY have dodged this bullet!

I won't know for sure until November 17 but I truly believe I'll be spared this.

Getting that pathology report was a big deal for me - I now know all the details about my "cancer"...everything from clean margins to the tumor capsule being intact to a lymph node being benign.

I was afraid to request this information - then I did and the surgeon's office could not have been easier to deal with...plus I also got a copy of the surgeon's notes on my surgery.

I'm still like Charlie Brown though - I'm afraid to believe my luck for fear something else will still be a problem. I'm not a person who generally has good luck!!


----------



## nodakmom

IDC, I hope you can be spared and get to have a wonderful holiday season with your mother. My thyca was 3.8cm, encapsulated, and you know what I've just been thru (compared to others it seems so minimal), so I do hope you don't have this extra worry much longer.


----------



## webster2

Here in Vermont, anything over 1 cm has additional treatments. I was delighted my big one was benign. I hope your next appointment will set your fears to rest so you can enjoy the holiday season.  And, the rest of your life!


----------



## Catnap

I DClaire said:


> I have been going under the belief that my little cancer was 1.5 cm. Yesterday I got a copy of the actual pathology report and discovered it was only 1.5 mm. I'm thinking if 1.5 cm is the cut-off number, I MAY have dodged this bullet!
> 
> I won't know for sure until November 17 but I truly believe I'll be spared this.
> 
> Getting that pathology report was a big deal for me - I now know all the details about my "cancer"...everything from clean margins to the tumor capsule being intact to a lymph node being benign.
> 
> I was afraid to request this information - then I did and the surgeon's office could not have been easier to deal with...plus I also got a copy of the surgeon's notes on my surgery.
> 
> I'm still like Charlie Brown though - I'm afraid to believe my luck for fear something else will still be a problem. I'm not a person who generally has good luck!!


1.5mm is tiny!! I can't imagine them doing RAI for that?? I saw lovely nuclear med doc today who says I don't need RAI for mine (1.1cm). Yay, so relieved. She is recently back from thyroid conference and seems most would now suggest RAI unnecessary in small encapsulated tumors. We'll do thyroglobulin tests and neck u/s's to monitor - anything untoward will have RAI down the line. 
Good luck with yours sounds unlikely you'd need, but they'd want to give you good reasons if they think you do.


----------

