Re: Didn't have RAI should I?

[Guest guest]

Hi jo and welcome to the group. My name is and I

didn't have RAI folowing my surgery either. Whether this

practice was common in 1965 is an unknown. I have been told two

opposing opinions. At any rate, I cannot tell you what is best

for you, but to talk to your doctors, keep reading posts, and

asking questions here.

One thing you want to avoid is contrast dye given in some

tests.Of course if the benefit of a test outweighs the danger of

receiving the iodinated contrast, i.e., heart imaging, sometimes

it cannot be avoided. However, CT scans to check for thyca

recurrence and IVP's to check the kidneys, usually for stones,

can be given using contrast WITHOUT iodine.

Always a good idea to get your pathology report. Mine has been

" lost " after all these years.

I'm not sure that I was followed correctly from the time of my

surgery to that time of my recurrence, but I'm glad I didn't get

RAI in the beginning. Its a YMMV (your mieage may vary) thing

between you and your doctors.

I tried to keep it basic, but if you have questions, feel free

to write me privately at

My best to you in your decision.

from NE Ohio.

=====

Irradiation to thymus as infant

3/25/65 tt Pap thyca w/lymph node mets

Hypoparathyroidism 3 days post radical tt

3/25/82 Recurrence in neck & R chest

Tx w/ 176 mCi RAI 131

hx kidney stones

No scan- 5/22/01 after TSH 38.2 & Tg <0.9 & TgAb <2.0

__________________________________________________

[Guest guest]

Hi Jo;

The

surgeon and my endocrinologist both said I DON'T have to have any

RAI

> because they will just monitor me by my thyroglobulin levels and if

> those rise then they will look into it. Does that sound right?

not exactly... if there is remaining thyroid tissue after the TT, and

there almost always is (its very difficult to remove a thyroid and

not have a little residual tissue) the thyroglobulin levels will

alwasy be elevated, showing remaining thryoid tissue. One of the

benefits of RAI is ablation of remaining thyroid tissue so that TG

can be used as a marker going forward. I think, (someone have a post

from one of the docs to send along???) that thyroglobulin isn't a

valid marker if the remaining thyroid tissue isn't ablated.

barb

[Guest guest]

Hi Jo;

The

surgeon and my endocrinologist both said I DON'T have to have any

RAI

> because they will just monitor me by my thyroglobulin levels and if

> those rise then they will look into it. Does that sound right?

not exactly... if there is remaining thyroid tissue after the TT, and

there almost always is (its very difficult to remove a thyroid and

not have a little residual tissue) the thyroglobulin levels will

alwasy be elevated, showing remaining thryoid tissue. One of the

benefits of RAI is ablation of remaining thyroid tissue so that TG

can be used as a marker going forward. I think, (someone have a post

from one of the docs to send along???) that thyroglobulin isn't a

valid marker if the remaining thyroid tissue isn't ablated.

barb

[Guest guest]

jo, you might want to read the section on lab tests from the thyca.org

website. Go to www.thyca.org ,click on lab tests and then click on Tg & TgAb

testing. It might help you understand . My Dr recomended that I get 30mCi of RAI

to reduce or remove the residual normal tissue. My Tg was 5.6 after the second

surgery. In July I am scheduled to have another Tg measurement.

Jan from Michigan, Dx pp/follic thyca Dec2000 Right lobectomy,Mar2001 TT, RAI

May2001

---------------------------------

[Guest guest]

Hi...Regarding RAI therapy following TT...

I was told that all surgeons, even the best of surgeons....(Dr. Balserak)

when removing the thyroid gland leave some healthy residual thyroid

tissue...(Described to me as removing all the " red " from the watermelon and

leaving only the " white " ...and not touching any of the " white "

either....Obviously, impossible to do) But if your doctors are confident that

it was encapsulated then they probably feel confident with this course of

treatment. I know that the doctors that participate in this group are pretty

aggressive about the disease and most always recommend RAI therapy for

" micro-metastistis " ...I believe that it is their contention that any residual

thyroid tissue is a potential breeding ground for future recurrence...Good

Luck...

Daria, Tucson AZ

TT 4/01

Papca, 1cm Rt. Lobe, micro-mets left, no node involvemnt, vascular involv.

suggested...

RAI 6/01--100mci

scan following RAI Clean---small residual tissue thyroid bed

8/01---endo appointment

200mcg levoxyl

[Guest guest]

Hi, jo --

I also did not have RAI. I had Stage I papillary, two surgeries for it

in January 1997 (we didn't know until 5 days after my first surgery that

I had thyca). I am monitored with twice yearly TSH and thyroglobulin

blood tests, and an annual ultrasound to my neck. My endo at that time

said I was in a " gray area " as far as whether I should have RAI or not,

but that she was comfortable monitoring me as I just mentioned. I got a

second opinion that concurred. You may want to get a second opinion

just to put your mind at ease about this.

Best regards,

Betty

> Hi! I introduced myself in my first post today but it's kind of long

> so people probably didn't read it so I will post my question here. I

> had TT due to papillary thyroid cancer Jan. '01. They said the thyca

> hadn't spread to any lymph nodes, vessels or the capsule.I think I am

> going to ask my endo for a copy of the reoprt from my surgery. The

> surgeon and my endocrinologist both said I DON'T have to have any RAI

> because they will just monitor me by my thyroglobulin levels and if

> those rise then they will look into it. Does that sound right? I go

> back to the endo on Tuesday for my 6 month visit and I think he's

> sending me for blood and a chest xray. That will be my first check to

> if it has spread anywhere because all I have had is blood since I

> found out I had thyca. When you reply please understand I am new to

> this so keep it basic if you can. Thanks

>

>

> jo- Toronto, Canada

> TT Jan'01 no mets

> NO RAI and wondering if I should have?

>

>

>

[Guest guest]

jo:

Back in Nov. 1996, I was told the exact same thing you were: no lymph

nodes, all encapsulated etc. and I was not given RAI because I

didn't " need " it and I could be monitored by just my Tg levels. Here

it is almost 5 years later, and I have had a recurrence and had RAI

done on June 5. I never felt comfortable about not having RAI and did

express that to my endo (who I didn't start seeing until sometime in

1998 because I was already seeing an oncologist)and I kept expressing

this to him when we never could my TSH levels to stabilize. My Tg

levels finally rose to the point where even he became concerned and I

was finally scanned and the cancer found. The radiologist who

reviewed the scan said he felt that the recurrence had probably been

there for at least 3 years. My advise is to get the RAI and get some

peace of mind.

susann

[Guest guest]

Dear Jo,

Thanks for your reply. I am feeling great after the RAI. Worst part

was being away from my 20month old and my husband. But they are used to

being " on their own " when I am at work. My husband owns his own business and

works from home, so there was very little change for the two of them, just

for me. But I survived and the reunion was wonderful.

In answer to your question about micro metastasis. Prior to my TT, I

had an ultrasound done where they noticed the growth on my right lobe, at the

same time they noticed little " specks " of something on my right lobe.

Following the TT, the pathology report said... 1 cm papca on right lobe and

micro metastasis on the left lobe. In other words, my tumor had metastasized

microscopically to the left side. It was not a " new growth " . If that makes

sense. That is why most doctors suggest RAI, because it goes after the

residual plus any microscopic cells that might not show up on a scan.

Daria, Tucson AZ

TT 4/01

Papca, 1cm Rt. Lobe, micro-mets left, no node involvement, vascular involv.

suggested...

RAI 6/01--100mci

scan following RAI Clean---small residual tissue thyroid bed

8/01---endo appointment

200mcg levoxyl

[Guest guest]

Dear Jo,

Thanks for your reply. I am feeling great after the RAI. Worst part

was being away from my 20month old and my husband. But they are used to

being " on their own " when I am at work. My husband owns his own business and

works from home, so there was very little change for the two of them, just

for me. But I survived and the reunion was wonderful.

In answer to your question about micro metastasis. Prior to my TT, I

had an ultrasound done where they noticed the growth on my right lobe, at the

same time they noticed little " specks " of something on my right lobe.

Following the TT, the pathology report said... 1 cm papca on right lobe and

micro metastasis on the left lobe. In other words, my tumor had metastasized

microscopically to the left side. It was not a " new growth " . If that makes

sense. That is why most doctors suggest RAI, because it goes after the

residual plus any microscopic cells that might not show up on a scan.

Daria, Tucson AZ

TT 4/01

Papca, 1cm Rt. Lobe, micro-mets left, no node involvement, vascular involv.

suggested...

RAI 6/01--100mci

scan following RAI Clean---small residual tissue thyroid bed

8/01---endo appointment

200mcg levoxyl

[Guest guest]

Daria thanks for your reply. That watermelon is a good way of

explaining it so I can understand thanks. What is micro matastisis? I

am goping to ask my endo for a copy of my pathology report so I can

read it. How are you feeling?

jo, Toronto, Canada

TT Jan'-01- papillary

No RAI???

> Hi...Regarding RAI therapy following TT...

>

> I was told that all surgeons, even the best of surgeons....(Dr.

Balserak)

> when removing the thyroid gland leave some healthy residual thyroid

> tissue...(Described to me as removing all the " red " from the

watermelon and

> leaving only the " white " ...and not touching any of the " white "

> either....Obviously, impossible to do) But if your doctors are

confident that

> it was encapsulated then they probably feel confident with this

course of

> treatment. I know that the doctors that participate in this group

are pretty

> aggressive about the disease and most always recommend RAI therapy

for

> " micro-metastistis " ...I believe that it is their contention that any

residual

> thyroid tissue is a potential breeding ground for future

recurrence...Good

> Luck...

> Daria, Tucson AZ

> TT 4/01

> Papca, 1cm Rt. Lobe, micro-mets left, no node involvemnt, vascular

involv.

> suggested...

> RAI 6/01--100mci

> scan following RAI Clean---small residual tissue thyroid bed

> 8/01---endo appointment

> 200mcg levoxyl

>

>

>