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RAI - would you do it all over again?

teamwink
Posts: 97
Joined: May 2011

I am at a point where I am on the border about RAI - doc recommends it just to be sure the cancer is all gone, so we've opted to go the thyrogen route (and wait.....and wait...). My question is for those of you who've been in this situation - would you do RAI if you had the choice again? Or would you opt out? My papillary cancer was 1.5 by 1.4 by 2, removed by a TT (no evidence of spread to other glands)

teamwink
Posts: 97
Joined: May 2011

One more question - do you go on the LID when you do RAI through thyrogen? My doc has not mentioned it and I keep reading about it... am I missing something? Just want to be prepared :)

Survivor73
Posts: 135
Joined: Oct 2009

Hi There..not sure what kind of cancer you had, by I had 2 tumors, one 2 cm and one 1.8 cm. Papiliary cancer. Had total thyroidectomy.

When I was diagnosed, I was 41 - as per the dr, I didn't need RAI due to my age...if I was 3 yrs older, then I would have had RAI.

Anyway, I have had many people in my family that have had Thy ca. So, I was expecting RAI. When they said I didn't need it, i questioned it...so they did a thyrogen based blood test and it came back as a low positive for thyroid cells being in my body. So, they did an ultrasound...found a small nodule, but couldn't be certain that it was thyroid tissue or not...and couldn't biopsy due to the position, so they have been monitoring it for the past year and a half. Now, I am going for surgery - a right disection to remove this spot and the lymph nodes as the cancer has come back and it has definately spread to a lymph node.

So, my suggestion to you is to get the RAI...if there is any remaining thyroid cells in your body, it will get rid of them.

By the way, they say that the Low iodine diet increases the uptake of the radiation, thus making sure all thyroid cells are killed.

Whether you go off meds or use thyrogen, the LID is still recommended. Usually for 2-3 weeks prior to the treatment and for a couple of days after.

Good luck...for the LID, there are some good recipes on the thyroid cancer web site. Don't have the site handy right now...but can find it if you need it.

Hope things work out for you,
S73

amorriso
Posts: 186
Joined: Oct 2010

Hi. I had my first round of RAI after my TT. They doctors at the time said there were 2 lymph nodes that were affected(they didnt remove them in the first surgery).

I had problems a few months later with sore nodes and saw a couple of doctors - one did not recommend any further treatment, 2 others sent me for a PEt scan, which resulted in a modified neck dissection,(7 nodes were positive) and another round of RAI. My scans look good now.

If I hadnt done the first RAI I would have been in much more serious situation. They didnt think it had spread, obviously it had. Having to do the 2nd one wasnt fun, but I feel pretty good now. And more confident that they have eliminated the remaining cancer cells.

I went the hypo route the first time, thyrogen the second.

So I recommend the RAI - just in case there are any cancer cells hiding - you'd rather be sure they are gone than have to wonder.

Good luck

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

Yes I would. But I already knew my Papillary cancer had metastasized.

However, you should be aware that there are risks involved {to you and to those around you} and there is no guarantee RAI will be effective. Your endocrinologist should be able to explain to you what the risks are and the chances any metastasis won't be iodine avid.

Alan

PS Is the 1.5 x 1.4 x 2 in CMs or MMs? If it's in MMs then there is a very much smaller chance your tumor had metastasized. But not no chance, my 4 tumors were all smaller than 2.6 mm and at least one of them had metastasized.

sunnyaz
Posts: 582
Joined: Oct 2010

My Endo opted me out of RAI after my TT. I ended up having metastasis six months later. I had a total of three surgeries and two RAI treatments because I didn't have the first RAI. I had no evidence of metastasis either. Small node, caught early. But after the second surgery, neck dissection I was discovered to have the B-RAF mutation gene. Now, I am never out of the woods. Had my doctor tested for that after my first surgery, done the RAI, I might not have had the metastasis.

ALWAYS do the LID diet. You can't uptake if your cells are full of iodine. Don't get the bang for your buck. No point in doing it if you won't uptake the iodine. Do it for at least two weeks. Thyrogen or not, doesn't matter. I would do the Thyrogen if I were you. Hypothyroidism sucks! I did it both times and from what I have heard, it was a good idea.

Blessings,
Julie-SunnyAZ

teamwink
Posts: 97
Joined: May 2011

You each were super helpful! I appreciate you taking time to answer my question - I am very apprehensive and paranoid about this all, but I am confident in the decision now to do RAI. Thank you so very much!!!

sunnyaz
Posts: 582
Joined: Oct 2010

RAI isn't as bad as most people think it's going to be. I tell everyone this: think of it as a mini "me" vacation. You can spend some time alone, take naps, watch your favorite daytime TV, read a good book etc. I actually enjoyed my time alone. Wish I could do it again sometimes. It's a better option than working my a** off all week long.
:)Julie-SunnyAZ

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

I agree Julie. I expected it to be a trial from what I had read leading upto it, but the reality wasn't any where near as bad as I had been lead to expect. Even the LID leading up to it wasn't that bad. I switched to uniodized salt, stayed away from the foods I was supposed to stay away from and cooked everything else like I usually do.

Alan

nasher
Posts: 507
Joined: Apr 2010

I am puting my vote in for getting RAI as well.

From everything they can see from my scan 1 year out it looks like they managed to get all my thryoid tissue with the RAI. What that means for me is the chance that I could get this agian is much less.

RAI was not that bad... Yes I still have drymouth as well as loss of some of my taste and a constant metallic taste in my mouth but I would do it agian without question.

Craig

teamwink
Posts: 97
Joined: May 2011

Is there some restriction in RAI that you can't use a laptop? My mom told me this, and I had not been told before about it. Just curious.... I work via an online platform for education, so I sort of have to be on a computer!

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

I asked the nuclear medicine people this exact same question, no restrictions. You won't damage your computer equipment.

sunnyaz
Posts: 582
Joined: Oct 2010

I used my laptop during my entire isolation period. No problems.
Julie-SunnyAZ

nasher
Posts: 507
Joined: Apr 2010

the worry is contamination

if you use your laptop you will get some radioactive iodine contamination on it.

you can wear gloves if you are worried about this.

if not realize the 1/2 life of RAI-131 is 8.5 days so in 60 days the contamination will be 7 1/2 lifes down or basicaly not there or 0.78% of what it got contaminated with.

If kids use your laptop or your cat sleeps on it you might worry

But if like most people you are the only one who uses your laptop then thats no worry.

It will not damage your computer.

you should ask if you need to be online and are in the hospital the room I was in barely had a cell phone signal (it had lead shealding) since it was the room they use for all radiation treatments.

We have had many people who were in hospital during treatment post here.

Craig

durnhamd
Posts: 3
Joined: Jun 2011

I am doing RAI on 6/1/11. Yes, I am doing the LID and recieving Thyrogen before the scan. I will also stop my Synthroid 5 days before the scan.

canuckfan
Posts: 7
Joined: Jun 2011

I love reading all of your responses....as someone who had RAI, with spread of PC in to lymph nodes, I still often wonder what it would have been like NOT to have RAI. While I have had a lot of issues since RAI (due to RAI), many people on our facebook site (Thyroid Cancer 411), have had serious ramifications after doing RAI, including blown out tear ducts, other cancers, skin issues, etc.. We have had some great discussions and debate about it. I would have surgery before RAI again...my RAI experience was very harsh physically and I shudder to think of ever doing it again. The one thing we can all nod to is that we will never know the "what if" on the alternate path. Unfortunately, we find out that RAI is administered differently depending on what doctors and hospitals one goes to, and what country one lives in. Some practices are very reckless with not giving sound direction. I'm not sure everyone knows the full ramifications of it.

teamwink
Posts: 97
Joined: May 2011

I just asked my doc again about the LID (+ thyrogen) and she said that since I'm on synthroid and that contains iodine, the LID is really not going to be necessary. I can't do the hypo route, as I am the caretaker of 2 small kids, and I also work (no relatives near). She assured me that this is fine, but it seems counter to what I read here...?

alapah's picture
alapah
Posts: 255
Joined: Oct 2009

I have done the LID three times, for my ablation dose of I-131 and for two scans, under instruction from my endo - for two weeks prior to dosing. For my major I-131 dose I was on it for 4 to 6 weeks because I'd been given a CT with iodine contrast and I figured why not do as much as I possibly could, easy as it is to do the LID, to make it as effective as possible.

That's my take on the LID, even with the use of thyrogen. Why not do everything you possibly can to increase the effectiveness of the dose, whether it be for a scan or an ablation. Remember too that it's a low iodine diet, not no iodine, so though there may be some in the synthroid you can cut out other sources easily enough.
best to you.

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

My endocrinologist had me do the LID but he also said it isn't certain a LID increases the efficacy of RAI treatments. This got me googling and I found a recent study which said ...

"Given that LIDs reduce urinary iodine measurements, increase I-131 uptake, and possibly improve efficacy of I-131 treatment, we currently favor the use of a 1-2-week LID before I-131 therapy or scanning. However, more research is needed to clarify the role of this dietary intervention."

To me, this means that everything points to LID being beneficial but there is no proof* that it is. This is sort of like the cholesterol/egg rule that has since been debunked. It made perfect sense that a high cholesterol food like eggs would increase cholesterol levels in people. However once long term studies were concluded, there was no corellation between the two. I'm not saying this will be the case with LID/RAI, but there's a chance that it could be, probably a very small chance.

[*Proof like a long range study of a large group of RAI patients, half doing LID the other half not. Then seeing if there is any difference in recurrance or unrelated complications between the two groups.]

I'm guessing this study is why your endocrinologist is telling you what she told you.

I'd still do the LID, which I did in April. Do the uniodized salt thing, stay away from pre-packaged foods {nearly all have some salt in them} and stay away from the foods on the high iodine list: seafood, pickled things {like sauerkraut} etc. I didn't do the thyca recipes {or any other recipes}, I cooked the foods I was able to cook pretty much the way I liked to cook them. It should be a little easier now than in April when I did it, more fresh veggies available.

Alan

nasher
Posts: 507
Joined: Apr 2010

well the synthroid compound itself has iodine but its bound iodine.

C15H10I4N NaO4 • H2O

besides that there is no iodine i can see in the synthroid
--- from http://www.rxabbott.com/pdf/Synthroid.pdf ---
active ingredients :
SYNTHROID® (levothyroxine sodium tablets, USP) contain synthetic crystalline L-3,3’,5,5’-tetraiodothyronine sodium salt
[levothyroxine (T4) sodium]. Synthetic T4 is identical to that produced in the human thyroid gland. Levothyroxine (T4)
sodium has an empirical formula of C15H10I4N NaO4 • H2O, molecular weight of 798.86 g/mol (anhydrous), and structural
formula
Inactive Ingredients:
acacia, confectioner’s sugar (contains corn starch), lactose monohydrate, magnesium stearate, povidone, and talc.

The following are the color additives by tablet strength:
Strength (mcg) Color additive(s)
25.............FD&C Yellow No. 6 Aluminum Lake
50.............None
75.............FD&C Red No. 40 Aluminum Lake, FD&C Blue No. 2 Aluminum Lake
88.............FD&C Blue No. 1 Aluminum Lake, FD&C Yellow No. 6 Aluminum Lake,
...............D&C Yellow No. 10, Aluminum Lake
100............D&C Yellow No. 10 Aluminum Lake, FD&C Yellow No. 6 Aluminum Lake
112............D&C Red No. 27 & 30 Aluminum Lake
125............FD&C Yellow No. 6 Aluminum Lake, FD&C Red No. 40 Aluminum Lake,
...............FD&C Blue No. 1, Aluminum Lake
137............FD&C Blue No. 1 Aluminum Lake
150............FD&C Blue No. 2 Aluminum Lake
175............FD&C Blue No. 1 Aluminum Lake, D&C Red No. 27 & 30 Aluminum Lake
200............FD&C Red No. 40 Aluminum Lake
300............D&C Yellow No. 10 Aluminum Lake, FD&C Yellow No. 6 Aluminum Lake,
...............FD&C Blue No. 1, Aluminum Lake
Meets USP Dissolution Test 3

teamwink
Posts: 97
Joined: May 2011

I appreciate the information, everyone - my doc today cotradicted what she'd originally said and said that I "probably should" do the LID. And that a hotel "probably wasn't a good idea" - after she had previously suggested this was the route to take since I had small children. I sincerely appreciate the posts from each of you, as it encouraged me to NOT take her information at face value. I questioned... she got VERY pushy/annoyued with me. Yes, I set an appointment with a new doctor (wish me luck!). I just couldn't take not being a priority to the doctor who is handling my cancer ;(

sunnyaz
Posts: 582
Joined: Oct 2010

You must be in control of your own health care choices. Your doctor should be giving your these options and explaining the risks and benefits. Know your options, get second and even third opinions. Sounds like a new doctor is a good idea if she suggested a hotel. You risk exposing other people to RAI. It's best to have an isolation room at home for about seven days. Your kids could stay with a relative for that time period.

Good wishes at your new doctor. I hope this one works out better for you.

Blessings,
Julie-SunnyAZ

nasher
Posts: 507
Joined: Apr 2010

It is amazing how often I find out the doctors don’t know everything about my condition

as Julie said you need to control your own health care choices.

every time I get told about a condition they think I have or prescribe a new drug or such I always look it up online in multiple searches... and most the time I see something on this board that I think it interesting or questionable I also do multiple searches.

About 1/2 the docs I talk to get annoyed that I do my own research and the other ones seem at least semi interested in my questions and conclusions.

I know i posted this on another topic awhile ago but I thought it would be a good idea to post it again

=== If you have not already make a medical card (or sheets of paper if it’s long enough) ===
The past 3 days I have seen 3 different doctors and each one of them congratulated me on being smart enough to make the card.

I am posting an edited version of my card so you can see what I have on mine.

====
Craig **********
Blood type A-

In case of emergency contact ******* ****** (xxx)xxx-xxxx (wife)

Medications
1) Synthroid 200 mgs / day
2) Cytomel 25 mgs/day
3) Celexa 20 mg/day
4) Diazepam 5mg/as needed 2x day max
5) Claritin EQ 10mg/day as needed
6) hydrochlorothiazide 12.5 mg/day

Over the counter
1) Vitamin D3 3000 ui/day
2) Calcium 1000 mg/day
3) Centrum Multivitamin 1/day

Surgeries
1) Feb 2010 Right side Thyroidectomy
2) Mar 2010 Thyroidectomy Completion
3) Apr 2010 Stapedectomy Right Ear
4) May 2010 Radioactive Iodine 175 mCi
5) Aug 2010 Stapedectomy Left Ear

MEDIC ALERTS
1) Allergy codeine
2) NO MRI <- medical implants in ear
3) Thyroidectomy (Thyroid cancer)
---------
For myself I carry 2-3 copies of this card so I can hand them out to the doctor or dentist or pharmachist or whatever and there is still one in my wallet

My Wife’s card is almost 2 pages long.

I wish you luck with your new doctor.
Remember attitude is everything let them know you trust them as a medical professional but that you are going to ask questions and be in charge of your treatment.

Craig

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