Re: Radiated Iodine Therapy

[Guest guest]

Hi Dianne, glad to hear you are OK post-op. The radioactive iodine

is painless first of all, in case you were worried. Secondly, I'm

wondering what sources say it's old school? I have never heard that

before. I would want to see studies that backed up that assertion

and also the idea that it may cause cancer down the line - I have

never heard that either. . .

I think following the drs' advice is a good way to proceed. A good

endocrinologist will be up to date on the latest literature and will

be working toward your best interests' and best chances at avoiding

recurrance. If you are worried about these ideas, ask the dr about

them directly.

Best wishes,

Jude

> Hi, new to this group!

> I had surgery for near total thyroidectomy last

> August (while in my second tri-mester of pregnancy).

> Conclusion of papillary thryoid cancer.

> After delivery of my healthy baby in January and several months

> of breastfeeding, I'm getting ready to receive my radiated

> iodine therapy. Does anyone have any info on the therapy,

> as far as; DO WE HAVE TO DO THIS? I've heard that it's old

> school stuff and most likely would cause other cancers 10 years

> later! Is this therapy the best thing to do?

>

> Thanks for anyone's input and time!

[Guest guest]

Dianne,

I am assuming you are having an I-131 ablation? That is where you

drink the liquid iodine or swallow a pill and wait until your

radioactive levels decrease enough to be released from the

hospital? If so, another tip is to drink a LOT of water. . .it will

help the process to go faster. If it's another type of treatment,

it may not be painless, I don't know. . .but again address all of

your concerns with your doctor(s).

Best,

Jude

> Hi, new to this group!

> I had surgery for near total thyroidectomy last

> August (while in my second tri-mester of pregnancy).

> Conclusion of papillary thryoid cancer.

> After delivery of my healthy baby in January and several months

> of breastfeeding, I'm getting ready to receive my radiated

> iodine therapy. Does anyone have any info on the therapy,

> as far as; DO WE HAVE TO DO THIS? I've heard that it's old

> school stuff and most likely would cause other cancers 10 years

> later! Is this therapy the best thing to do?

>

> Thanks for anyone's input and time!

[Guest guest]

> .....another tip is to drink a LOT of water. . .it will

> help the process to go faster.

This is not the best of advice. See Dr. Ain's repost below.

Marilyn

Concerning I-131 therapies:

I typically advise patients (after doses < 250 mCi) to drink only

when thirsty. Attempts to " wash out " the radioiodine are

self-defeating, particularly in the first 48 hours. This is because

a significant portion of the effective radioiodine recirculates for

additional therapeutic uptake into remnant or tumor tissue. Drinking

large quantities of liquid to cause a forced diuresis actually

lowers the effectiveness of the administered radioiodine.

After doses exceeding 250 mCi, it is advisable to drink 8 oz

of liquid each waking hour and to empty the bladder every two

hours, only for the first day. This is calculated to minimize

radiation dose to the bladder wall and ovaries. Drinking more,

or less, actually increases the radiation dose to these organs.

After the first day, drink when thirsty and urinate when you

want. It is quite rare for patients to require more than 48

hours hospitalization after radioiodine doses under 500 mCi, unless

they have kidney problems.

**************PLEASE BE ADVISED**********************

THE INFORMATION CONTAINED IN THIS COMMUNICATION IS INTENDED

FOR EDUCATIONAL PURPOSES ONLY. IT IS NOT INTENDED, NOR SHOULD

IT BE CONSTRUED, AS SPECIFIC MEDICAL ADVICE OR DIRECTIONS. ANY

PERSON VIEWING THIS INFORMATION IS ADVISED TO CONSULT THEIR OWN

PHYSICIAN(S) ABOUT ANY MATTER REGARDING THEIR MEDICAL CARE.

*************************************************

B. Ain, M.D.

Director, Thyroid Nodule & Oncology Clinical Service

Director, Thyroid Cancer Research Laboratory

Division of Endocrinology and Molecular Medicine

Department of Internal Medicine

University of Kentucky Medical Center

Lexington, Kentucky

[Guest guest]

Diane,

Sorry, I came in in the middle of this discussion - but are you

saying that your endo at UofC is suggesting no RAI? (Which doctor do

you see?) I see Dr.Refetoff at UofC and he has never mentioned that

possibility -- tho I feel that he has under-treated me based on

everyone else's treatment (no TT after PT, two 29 mc dosses of RAI

before a 150 dose)- I will add my encouragement to the ones already

voiced here that you get a RAI treatment -- taking care of the cancer

you have now is more important than worrying about something that

might (and probably won't) happen in the future. Good luck with your

treatment and with the new baby.

Judy

-- In Thyca , " Dianne " <mowins1@m...> wrote:

> Hi Jude,

> Sorry, to take so long, it's very hard with getting on-line

> with a new baby around!

>

> I'm worried about the therapy because I'm an overly sensitive person

> usually. My whole pregnancy, I was very sick.

> One of the ob's at my office had the same Thyroid cancer and her

> surgeon elected to remove the whole thyroid and skip the radiation

> part. He believes this procedure is usually not warranted due to it

> causing other problems later down the line. Like esphogeal, stomach

and

> colon cancers, etc. Stomach and colon cancer runs in my family and

I've

> always had digestive problems anyhow, like IBS.

>

> I can't remember to give you any sources other than a few medical

books

> I've read and showing the statics of the therapy, which were loaned

from

> University of Chicago Hospitals.

>

> My doctor is the head of the board at U of C and the top Endo

doctor,

> but I still think they can be mis -leading a little or know only

what they have

> learned.

>

> It's very hard for me to trust doctors, when all my life I've had

hormone imbalances

> and they were improperly diagnosed or treated. I believe that my

cancer is the

> aftermath of this improper handling and all due to me being very

ignorant and

> trusting doctors and not seeking the knowledge or pushing on, when

I knew something

> wasn't right.

>

> For one instance, I've learned that 85% of life-time cure of

papillary thyroid carcinoma only means that those patients (85%) in

that study lived at least 10 years or more.

> To me, this is not life-time. I've mentioned this to my Doctor and

he skirted around the subject.

>

> Take care,

>

> Dianne

> TC - 1.5 cm.

> NTT - 8/21/02

> Re: Radiated Iodine Therapy

>

> Hi Dianne, glad to hear you are OK post-op. The radioactive

iodine

> is painless first of all, in case you were worried. Secondly, I'm

> wondering what sources say it's old school? I have never heard

that

> before. I would want to see studies that backed up that assertion

> and also the idea that it may cause cancer down the line - I have

> never heard that either. . .

>

> I think following the drs' advice is a good way to proceed. A

good

> endocrinologist will be up to date on the latest literature and

will

> be working toward your best interests' and best chances at

avoiding

> recurrance. If you are worried about these ideas, ask the dr

about

> them directly.

>

> Best wishes,

> Jude

>

>

> > Hi, new to this group!

> > I had surgery for near total thyroidectomy last

> > August (while in my second tri-mester of pregnancy).

> > Conclusion of papillary thryoid cancer.

> > After delivery of my healthy baby in January and several months

> > of breastfeeding, I'm getting ready to receive my radiated

> > iodine therapy. Does anyone have any info on the therapy,

> > as far as; DO WE HAVE TO DO THIS? I've heard that it's old

> > school stuff and most likely would cause other cancers 10 years

> > later! Is this therapy the best thing to do?

> >

> > Thanks for anyone's input and time!

>

>

>

[Guest guest]

Diane,

Sorry, I came in in the middle of this discussion - but are you

saying that your endo at UofC is suggesting no RAI? (Which doctor do

you see?) I see Dr.Refetoff at UofC and he has never mentioned that

possibility -- tho I feel that he has under-treated me based on

everyone else's treatment (no TT after PT, two 29 mc dosses of RAI

before a 150 dose)- I will add my encouragement to the ones already

voiced here that you get a RAI treatment -- taking care of the cancer

you have now is more important than worrying about something that

might (and probably won't) happen in the future. Good luck with your

treatment and with the new baby.

Judy

-- In Thyca , " Dianne " <mowins1@m...> wrote:

> Hi Jude,

> Sorry, to take so long, it's very hard with getting on-line

> with a new baby around!

>

> I'm worried about the therapy because I'm an overly sensitive person

> usually. My whole pregnancy, I was very sick.

> One of the ob's at my office had the same Thyroid cancer and her

> surgeon elected to remove the whole thyroid and skip the radiation

> part. He believes this procedure is usually not warranted due to it

> causing other problems later down the line. Like esphogeal, stomach

and

> colon cancers, etc. Stomach and colon cancer runs in my family and

I've

> always had digestive problems anyhow, like IBS.

>

> I can't remember to give you any sources other than a few medical

books

> I've read and showing the statics of the therapy, which were loaned

from

> University of Chicago Hospitals.

>

> My doctor is the head of the board at U of C and the top Endo

doctor,

> but I still think they can be mis -leading a little or know only

what they have

> learned.

>

> It's very hard for me to trust doctors, when all my life I've had

hormone imbalances

> and they were improperly diagnosed or treated. I believe that my

cancer is the

> aftermath of this improper handling and all due to me being very

ignorant and

> trusting doctors and not seeking the knowledge or pushing on, when

I knew something

> wasn't right.

>

> For one instance, I've learned that 85% of life-time cure of

papillary thyroid carcinoma only means that those patients (85%) in

that study lived at least 10 years or more.

> To me, this is not life-time. I've mentioned this to my Doctor and

he skirted around the subject.

>

> Take care,

>

> Dianne

> TC - 1.5 cm.

> NTT - 8/21/02

> Re: Radiated Iodine Therapy

>

> Hi Dianne, glad to hear you are OK post-op. The radioactive

iodine

> is painless first of all, in case you were worried. Secondly, I'm

> wondering what sources say it's old school? I have never heard

that

> before. I would want to see studies that backed up that assertion

> and also the idea that it may cause cancer down the line - I have

> never heard that either. . .

>

> I think following the drs' advice is a good way to proceed. A

good

> endocrinologist will be up to date on the latest literature and

will

> be working toward your best interests' and best chances at

avoiding

> recurrance. If you are worried about these ideas, ask the dr

about

> them directly.

>

> Best wishes,

> Jude

>

>

> > Hi, new to this group!

> > I had surgery for near total thyroidectomy last

> > August (while in my second tri-mester of pregnancy).

> > Conclusion of papillary thryoid cancer.

> > After delivery of my healthy baby in January and several months

> > of breastfeeding, I'm getting ready to receive my radiated

> > iodine therapy. Does anyone have any info on the therapy,

> > as far as; DO WE HAVE TO DO THIS? I've heard that it's old

> > school stuff and most likely would cause other cancers 10 years

> > later! Is this therapy the best thing to do?

> >

> > Thanks for anyone's input and time!

>

>

>

[Guest guest]

Diane,

Sorry, I came in in the middle of this discussion - but are you

saying that your endo at UofC is suggesting no RAI? (Which doctor do

you see?) I see Dr.Refetoff at UofC and he has never mentioned that

possibility -- tho I feel that he has under-treated me based on

everyone else's treatment (no TT after PT, two 29 mc dosses of RAI

before a 150 dose)- I will add my encouragement to the ones already

voiced here that you get a RAI treatment -- taking care of the cancer

you have now is more important than worrying about something that

might (and probably won't) happen in the future. Good luck with your

treatment and with the new baby.

Judy

-- In Thyca , " Dianne " <mowins1@m...> wrote:

> Hi Jude,

> Sorry, to take so long, it's very hard with getting on-line

> with a new baby around!

>

> I'm worried about the therapy because I'm an overly sensitive person

> usually. My whole pregnancy, I was very sick.

> One of the ob's at my office had the same Thyroid cancer and her

> surgeon elected to remove the whole thyroid and skip the radiation

> part. He believes this procedure is usually not warranted due to it

> causing other problems later down the line. Like esphogeal, stomach

and

> colon cancers, etc. Stomach and colon cancer runs in my family and

I've

> always had digestive problems anyhow, like IBS.

>

> I can't remember to give you any sources other than a few medical

books

> I've read and showing the statics of the therapy, which were loaned

from

> University of Chicago Hospitals.

>

> My doctor is the head of the board at U of C and the top Endo

doctor,

> but I still think they can be mis -leading a little or know only

what they have

> learned.

>

> It's very hard for me to trust doctors, when all my life I've had

hormone imbalances

> and they were improperly diagnosed or treated. I believe that my

cancer is the

> aftermath of this improper handling and all due to me being very

ignorant and

> trusting doctors and not seeking the knowledge or pushing on, when

I knew something

> wasn't right.

>

> For one instance, I've learned that 85% of life-time cure of

papillary thyroid carcinoma only means that those patients (85%) in

that study lived at least 10 years or more.

> To me, this is not life-time. I've mentioned this to my Doctor and

he skirted around the subject.

>

> Take care,

>

> Dianne

> TC - 1.5 cm.

> NTT - 8/21/02

> Re: Radiated Iodine Therapy

>

> Hi Dianne, glad to hear you are OK post-op. The radioactive

iodine

> is painless first of all, in case you were worried. Secondly, I'm

> wondering what sources say it's old school? I have never heard

that

> before. I would want to see studies that backed up that assertion

> and also the idea that it may cause cancer down the line - I have

> never heard that either. . .

>

> I think following the drs' advice is a good way to proceed. A

good

> endocrinologist will be up to date on the latest literature and

will

> be working toward your best interests' and best chances at

avoiding

> recurrance. If you are worried about these ideas, ask the dr

about

> them directly.

>

> Best wishes,

> Jude

>

>

> > Hi, new to this group!

> > I had surgery for near total thyroidectomy last

> > August (while in my second tri-mester of pregnancy).

> > Conclusion of papillary thryoid cancer.

> > After delivery of my healthy baby in January and several months

> > of breastfeeding, I'm getting ready to receive my radiated

> > iodine therapy. Does anyone have any info on the therapy,

> > as far as; DO WE HAVE TO DO THIS? I've heard that it's old

> > school stuff and most likely would cause other cancers 10 years

> > later! Is this therapy the best thing to do?

> >

> > Thanks for anyone's input and time!

>

>

>

[Guest guest]

Hi Dianne,

When I joined last night, I'd planned to just read and learn but,

here I am replying already. I just wanted to share that I've also

heard that RAI is not always the standard treatment.

I was diagnosed with papillary thyca almost 2 years ago and my entire

thyroid plus some right side lymph nodes were removed when I was in

the 2nd trimester of my first pregnancy (August 2001). Healthy baby

born in late December/2001 and RAI done in March '02 since was not

breastfeeding. I think my dose was 157millicuries. No scan was done

after the RAI because the doc forgot to order it (she blames the

hospital). I wish I'd been a member of this group then because I

would have known to throw a complete fit before leaving that hospital

with no scan. Anyway, first RAI scan was not done until this past

January (with new doc). It was thyrogen induced and it was negative.

However, my thyroglobulin showed a slight increase after the thyrogen

so we knew something could still be there. Went hypo for second RAI

scan in late February. This was also negative but thyroglobulin was

still increasing. Ultrasounds done at local hosptial showed nothing

but my doc did point out that there was a lymph node betweed my

carotid artery and my jugular that couldn't really be seen so they

didn't know if it was suspicious or not. Doc's plan was to repeat RAI

therapy but I felt that this was just a " shot in the dark " . At this

point, I'd been off synthroid for 5 weeks and was very hypo. I did

not feel comfortable with this option and contacted MD

Cancer Center in Houston for a patient self-referral to see what they

could find. My new doc and I discussed RAI therapy and he pointed out

that it is a very good therapy but that it does have risks. The basic

message that I got was that there is a time and a place for RAI

therapy but that I was not at either and probably had never been.

Also, a small percentage of people can't scan with RAI. I guess I

must be one of them which might explain why the RAI therapy in

March '02 didn't take care of the remaining cancer in my neck.

FYI, the skill of the ultrasound tech is so important. Under

ultrasound in Houston, my neck showed 2 suspicious areas, an FNA was

done and confirmed that I still had some thyca in those spots. All

evidence shows that this was probably there at the time of the first

surgery but was missed and the RAI did not take care of it for me.

Surgery at MD this April removed 14 more lymph nodes, 8 of

which were cancerous. To date, we have no additional RAI therapy

planned. I'm very glad that I was able to be treated in Houston. I've

learned my lesson about trusting my instincts and taking control of

my own care.

Ok, sorry for this very long first post but I do have one more thing.

Does anyone out there have any tips for hair loss caused by low TSH?

My hair has been falling out like mad for about 4 weeks and it's

getting pretty thin. Current synthroid is 175 with a TSH of .015.

thanks,

kala

> > Hi, new to this group!

> > I had surgery for near total thyroidectomy last

> > August (while in my second tri-mester of pregnancy).

> > Conclusion of papillary thryoid cancer.

> > After delivery of my healthy baby in January and several months

> > of breastfeeding, I'm getting ready to receive my radiated

> > iodine therapy. Does anyone have any info on the therapy,

> > as far as; DO WE HAVE TO DO THIS? I've heard that it's old

> > school stuff and most likely would cause other cancers 10 years

> > later! Is this therapy the best thing to do?

> >

> > Thanks for anyone's input and time!

>

>

>

[Guest guest]

Hi Dianne,

When I joined last night, I'd planned to just read and learn but,

here I am replying already. I just wanted to share that I've also

heard that RAI is not always the standard treatment.

I was diagnosed with papillary thyca almost 2 years ago and my entire

thyroid plus some right side lymph nodes were removed when I was in

the 2nd trimester of my first pregnancy (August 2001). Healthy baby

born in late December/2001 and RAI done in March '02 since was not

breastfeeding. I think my dose was 157millicuries. No scan was done

after the RAI because the doc forgot to order it (she blames the

hospital). I wish I'd been a member of this group then because I

would have known to throw a complete fit before leaving that hospital

with no scan. Anyway, first RAI scan was not done until this past

January (with new doc). It was thyrogen induced and it was negative.

However, my thyroglobulin showed a slight increase after the thyrogen

so we knew something could still be there. Went hypo for second RAI

scan in late February. This was also negative but thyroglobulin was

still increasing. Ultrasounds done at local hosptial showed nothing

but my doc did point out that there was a lymph node betweed my

carotid artery and my jugular that couldn't really be seen so they

didn't know if it was suspicious or not. Doc's plan was to repeat RAI

therapy but I felt that this was just a " shot in the dark " . At this

point, I'd been off synthroid for 5 weeks and was very hypo. I did

not feel comfortable with this option and contacted MD

Cancer Center in Houston for a patient self-referral to see what they

could find. My new doc and I discussed RAI therapy and he pointed out

that it is a very good therapy but that it does have risks. The basic

message that I got was that there is a time and a place for RAI

therapy but that I was not at either and probably had never been.

Also, a small percentage of people can't scan with RAI. I guess I

must be one of them which might explain why the RAI therapy in

March '02 didn't take care of the remaining cancer in my neck.

FYI, the skill of the ultrasound tech is so important. Under

ultrasound in Houston, my neck showed 2 suspicious areas, an FNA was

done and confirmed that I still had some thyca in those spots. All

evidence shows that this was probably there at the time of the first

surgery but was missed and the RAI did not take care of it for me.

Surgery at MD this April removed 14 more lymph nodes, 8 of

which were cancerous. To date, we have no additional RAI therapy

planned. I'm very glad that I was able to be treated in Houston. I've

learned my lesson about trusting my instincts and taking control of

my own care.

Ok, sorry for this very long first post but I do have one more thing.

Does anyone out there have any tips for hair loss caused by low TSH?

My hair has been falling out like mad for about 4 weeks and it's

getting pretty thin. Current synthroid is 175 with a TSH of .015.

thanks,

kala

> > Hi, new to this group!

> > I had surgery for near total thyroidectomy last

> > August (while in my second tri-mester of pregnancy).

> > Conclusion of papillary thryoid cancer.

> > After delivery of my healthy baby in January and several months

> > of breastfeeding, I'm getting ready to receive my radiated

> > iodine therapy. Does anyone have any info on the therapy,

> > as far as; DO WE HAVE TO DO THIS? I've heard that it's old

> > school stuff and most likely would cause other cancers 10 years

> > later! Is this therapy the best thing to do?

> >

> > Thanks for anyone's input and time!

>

>

>