Re: ? clean scan but tg 13.4

[Guest guest]

I was diagnosed in August of 1999 and have gone hypo five times. ALL of my

low dose scans have been " clean " , but after the large doses of RAI the scans

show extensive uptake in my lungs, and now a new tumor in my neck. I guess

the low doses just aren't enough to light up our mets, for some of us. I

don't know why. I also had a Thyrogen scan last July, and it was " clean "

too. Please don't rely on that. I don't think Thyrogen can be used for

ablations. Your endo is right. Going hypo and then having a high dose of

RAI is the way to go.

Carolyn - NY

mrnd 4cm lymph node-pap., 8/99

TT 0.2cm in isthmus, fol/pap., 9/99 (that was ALL the cancer in my thyroid!)

mets to neck and lungs

RAI 200 mCi, 12/99

RAI 29.9 mCi (due to lab error on Tg) 8/00

RAI 200 mCi, 1/01

Thyrogen scan 7/01

RAI 200 mCi, 9/01

still have microscopic lung mets, plus 1cm neck tumor

Synthroid .15 TSH .02

In a message dated 1/5/2002 1:17:12 AM Eastern Standard Time,

nellehodge@... writes:

> I hate the thought of having to go hypo again for the 4th time! My

> endo told me that if I begged her she might let me have Thyrogen

> instead , but she really feels going hypo would have a better result

> with the higher abalation. Is that true? Since they know something

> is there, either tissue or cancer cells then why not use Thyrogen

> just for ablation with a follow up scan.

>

[Guest guest]

Welcome to the wonderful world of unidentified Tg growth. This past

year

I had a negative Thyrogen scan, and later a negative post-RAI scan

despite

88 Tg. I'm told that it might be bunches of thyca cells too small to

pick

up on scan.

What's up with the timeframes? I'm told that RAI takes 6-12 months to

do it's thing. Why is the Endo even testing/planning right after your

scan?

> Please, I need some input here. I was given a 3 mCi scanning dose

on

> 12-12-01 and 48 hrs later I had a WBS on 12-14-01. I did the LID

for

> 2 weeks. My TSH was 59.4 so I was hypo enough. Right after my

scan

> the nuclear doctor came down and told me it was " clean as a

> whistle. " I came home and shared the good news on the list. Two

> weeks later, (Wednesday) my endo's office called me and said my tg

> was 13.4. She said she wants me to go hypo again in 6-9 months and

> have 100 mCi RAI this time. Last yrs. scan showed uptake in my

neck

> and my tg was 20.1 so they gave me a low dose of 29.1 mCi. and said

> that should do the job. The yr. before that was my diagnosis,TT

and

> I had an ablation dose of 27.4 mCi with a follow up scan.

>

> Am I just unlucky, or is there something else going on here that I

> should be really concerned about? My thought is that the 2 low

doses

> just weren't enough. My current endo told me she would have dosed

me

> with 100 mCi from the start.

>

> Why would my last scan be " clean " but my tg is 13.4? Could the 3

mCi

> scanning dose have washed out of my body before the scan? If so,

> wouldn't the nuclear doc. know that?

>

> I hate the thought of having to go hypo again for the 4th time! My

> endo told me that if I begged her she might let me have Thyrogen

> instead , but she really feels going hypo would have a better

result

> with the higher abalation. Is that true? Since they know

something

> is there, either tissue or cancer cells then why not use Thyrogen

> just for ablation with a follow up scan.

>

> I know I'm asking a lot of questions, and I have an appt. with my

> endo in April, so I plan on asking her the same questions, but I

> thought I'd try to get some input from the list.

>

>

> Thanks in advance,

>

> Ellen Hodge

>

> 47 yr. dx. 11-99 1 cm papillary w/ follicular var. encapsulated

> no mets, 27.4 mCi and scan 1-00

> repeat scan 12-00 with uptake in neck repeat dose 29.1 mCi tg 20.1

> repeat scan 12-01 " clean " tg 13.4

> future plan is 6-9 month hypo and 100 mCi ablation with follow up

scan

[Guest guest]

Ellen,

From what I've read, its not uncommon to have a negative post scan

after 3 mCi and then have a positive post scan following a high

treatment dose. I think Dr Ain recommends a minimum dose of 150 mCi

in a negative prescan,positive Tg case. (hopefully someone will

repost his comments). If your doctor is recommending your treatment

dose in 6-9 months I would guess that she might do this without a pre

treatment scan at that time-to avoid possible stunning of thyca cells.

pap thcya 2.8cm 3 pos nodes 10/00 RAI 52 mCi, 4/01 TSH 83 Tg

4.6 RAI 154 mCi negative post treatment scan.

> Please, I need some input here. I was given a 3 mCi scanning dose

on

> 12-12-01 and 48 hrs later I had a WBS on 12-14-01. I did the LID

for

> 2 weeks. My TSH was 59.4 so I was hypo enough. Right after my scan

> the nuclear doctor came down and told me it was " clean as a

> whistle. " I came home and shared the good news on the list. Two

> weeks later, (Wednesday) my endo's office called me and said my tg

> was 13.4. She said she wants me to go hypo again in 6-9 months and

> have 100 mCi RAI this time. Last yrs. scan showed uptake in my neck

> and my tg was 20.1 so they gave me a low dose of 29.1 mCi. and said

> that should do the job. The yr. before that was my diagnosis,TT and

> I had an ablation dose of 27.4 mCi with a follow up scan.

>

> Am I just unlucky, or is there something else going on here that I

> should be really concerned about? My thought is that the 2 low

doses

> just weren't enough. My current endo told me she would have dosed

me

> with 100 mCi from the start.

>

> Why would my last scan be " clean " but my tg is 13.4? Could the 3

mCi

> scanning dose have washed out of my body before the scan? If so,

> wouldn't the nuclear doc. know that?

>

> I hate the thought of having to go hypo again for the 4th time! My

> endo told me that if I begged her she might let me have Thyrogen

> instead , but she really feels going hypo would have a better result

> with the higher abalation. Is that true? Since they know something

> is there, either tissue or cancer cells then why not use Thyrogen

> just for ablation with a follow up scan.

>

> I know I'm asking a lot of questions, and I have an appt. with my

> endo in April, so I plan on asking her the same questions, but I

> thought I'd try to get some input from the list.

>

>

> Thanks in advance,

>

> Ellen Hodge

>

> 47 yr. dx. 11-99 1 cm papillary w/ follicular var. encapsulated

> no mets, 27.4 mCi and scan 1-00

> repeat scan 12-00 with uptake in neck repeat dose 29.1 mCi tg 20.1

> repeat scan 12-01 " clean " tg 13.4

> future plan is 6-9 month hypo and 100 mCi ablation with follow up

scan

[Guest guest]

Hi Helen,

I had a similar story too (and I am also 47). My first RAI (April

'99)was 150mci. I continued to have a significant tg reading so I had

a tracer dose RAI (5mci)in Feb '00. The scan after both the first RAI

and tracer were both " clean " but I had a 22 tg while hypo for the

tracer, so I had another ablative dose RAI of 220mci 3 months later,

at which time my tg was 14 but the scan was again clean.

I think your current endo is correct -- low dose RAI (less than

100mci) is sometimes ineffective for ablation and tg is more important

for diagnosis than " clean " scans are. Most agree that you can have an

ablative dose RAI three months after a tracer dose (5mci or less).

Good Luck!

Rita (Toronto)

tt Feb '99 pap ca, 3.5cm

3 RAIs

> Please, I need some input here. I was given a 3 mCi scanning dose

on

> 12-12-01 and 48 hrs later I had a WBS on 12-14-01. I did the LID

for

> 2 weeks. My TSH was 59.4 so I was hypo enough. Right after my scan

> the nuclear doctor came down and told me it was " clean as a

> whistle. " I came home and shared the good news on the list. Two

> weeks later, (Wednesday) my endo's office called me and said my tg

> was 13.4. She said she wants me to go hypo again in 6-9 months and

> have 100 mCi RAI this time. Last yrs. scan showed uptake in my neck

> and my tg was 20.1 so they gave me a low dose of 29.1 mCi. and said

> that should do the job. The yr. before that was my diagnosis,TT and

> I had an ablation dose of 27.4 mCi with a follow up scan.

>

> Am I just unlucky, or is there something else going on here that I

> should be really concerned about? My thought is that the 2 low

doses

> just weren't enough. My current endo told me she would have dosed

me

> with 100 mCi from the start.

>

> Why would my last scan be " clean " but my tg is 13.4? Could the 3

mCi

> scanning dose have washed out of my body before the scan? If so,

> wouldn't the nuclear doc. know that?

>

> I hate the thought of having to go hypo again for the 4th time! My

> endo told me that if I begged her she might let me have Thyrogen

> instead , but she really feels going hypo would have a better result

> with the higher abalation. Is that true? Since they know something

> is there, either tissue or cancer cells then why not use Thyrogen

> just for ablation with a follow up scan.

>

> I know I'm asking a lot of questions, and I have an appt. with my

> endo in April, so I plan on asking her the same questions, but I

> thought I'd try to get some input from the list.

>

>

> Thanks in advance,

>

> Ellen Hodge

>

> 47 yr. dx. 11-99 1 cm papillary w/ follicular var. encapsulated

> no mets, 27.4 mCi and scan 1-00

> repeat scan 12-00 with uptake in neck repeat dose 29.1 mCi tg 20.1

> repeat scan 12-01 " clean " tg 13.4

> future plan is 6-9 month hypo and 100 mCi ablation with follow up

scan

[Guest guest]

Dear Ellen,

I agree with you that your low doses of RAI weren't enough to do the job.

Dr. Ain's opinion is that it's really not enough to do any job, and that 100mCi

is pretty much the standard minimum (see his letter, #1, below).

In addition to other explanations for a clean scan with elevated Tg is that your

thyca may be (or may have become) iodine resistant.

One way or another, the presence of Tg always means there are thyroid cells,

even if they can't be seen.

From Dr. Ain:

" Thyroglobulin is an independent marker for the presence of

residual thyroid cancer. Sometimes, the I-131 whole body scan is negative

although the thyroglobulin level is elevated (above 5-8 ng/mL). In this

situation, the patient has residual thyroid cancer, even though it is not

evident on the scan. Frequently, such a person may have a positive response to

I-131 therapy (> 150 mCi dose) with a positive post-therapy scan and decreased

follow-up thyroglobulin levels. Sometimes such a patient does not have a

response to radioiodine, indicating dedifferentiated tumor that no longer

takes up iodine. This type of patient is one of the topics of research in

our laboratory since new and different approaches are likely to be needed. "

(see entire letter, #2, below)

" Could the 3 mCi scanning dose have washed out of my body before the scan?

If so, wouldn't the nuclear doc. know that? "

What you describe is called " stunning " , and there are many doctors who believe

that it's not an issue. I think it's possible that it may not be a problem for

some, but may be for others.

A doctor on another list explained that thyroglobulin is exquisitely sensitive.

You need fewer cells to generate detectable levels. RAI scanning is relatively

insensitive and requires more cells to be detectable. Cells can be " shocked "

into not taking up iodine yet still make thyroglobulin.

Your endo sounds like she has a lot of thyca experience, and seems to agree with

the general protocol advised by the doctors who monitor this list. I certainly

don't blame you for not wanting to

go hypo again, and Thyrogen is definitely being used more often and earlier in

treatments, but I believe the jury is still out, and the Thyrogen web site

itself continues to state: ....

" Across the two clinical studies, the Thyrogen scan failed to detect

remnant

and/or cancer localized to the thyroid bed in 16% (20/124) of patients

in whom

it was detected by a scan after thyroid hormone withdrawal. In

addition, the

Thyrogen scan failed to detect metastatic disease in 24% (9/38) of

patients in

whom it was detected by a scan after thyroid hormone withdrawal. "

http://www.genzyme.com/thyrogen/prescinfo/welcome.htm

You may want to compromise a bit and discuss with your doctor the possibility of

delaying the next RAI a little longer, to give yourself time to recover from

your repeated bouts of hypo hell.

I hope this is helpful.

-

NYC (TT 2/99 dx pap/foll; RAI 100 mCi 3/99 & 4/00; current TSH ~.06 on .225

levothyroxine)

--------------------------------------------------------------------------------\

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

Dr. Ain letter #1 ....

Subj: Re: I-131 Ablation dosing

Date: 3/23/99 6:28:51 AM Pacific Standard Time

From: kbain1@... ( B. Ain, M.D.)

Sender: thyca-approval@...

Reply-to: thyca@...

To: thyca@...

>>The question is what do I need to ask the endo? What do I need to insist

>>on? Does anyone know the source of research that says 80-100mCi is better

>>first time than 29.9 mCi? I want a copy of it when I go in to the endo.

A different informed perspective:

It is a certainty that there is no concensus among nuclear medicine or

endocrinology physicians regarding the proper dose of I-131 to use for

treating thyroid cancer. Much of the reason for this is that most

physicians base their treatment upon " custom " and previous modes of

practice, particularly if they do not spend a significant portion of

their professional time dealing specifically with thyroid cancer and do

not actively do clinical or basic research in this field.

It is important to note that there is no scientific or

medical basis to the use of 29.9 mCi I-131 doses. This

custom arose from the administrative rules of the Nuclear Regulatory

Commission, that any dose of I-131 exceeding 30 mCi must be

administered as an inpatient in the hospital (requiring greater effort

by the physician, greater expense by the medical plan & /or patient, and

monitoring by a radiation health physicist). For purely logistic and

financial reasons, many physicians routinely adopted the use of the

29.9 mCi dose. I consider this to be inappropriate and contrary to

good patient management.

Sufficient studies have been published over the years to document the need to

administer sufficient I-131 to kill target tissues (thyroid cancer and

remnants). The principles have been clearly

defined

Schlesinger T, Flower MA & McCready VR (1989) Radiation dose assessments in

radioiodine (131I) therapy. 1. The necessity for in vivo quantitation and

dosimetry in the treatment of carcinoma of

the thyroid. Radiother Oncol 14, 35-41.

Low doses, such as those 0f 30 mCi or less, are usually ineffective:

1. Maxon HR, SR, Hertzberg VS, Kereiakes JG, Chen I-W, Sperling MI

& Saenger EL (1983) Relation between effective radiation dose and

outcome of radioiodine therapy for thyroid cancer. New Eng J Med 309, 937-941.

2. Ramacciotti C, Pretorius HT, Line BR, Goldman JM & Robbins J (1982)

Ablation of nonmalignant thyroid remnants with low doses of radioactive iodine:

concise communication. J Nucl Med 23, 483-489.

Effectiveness can be variably interpreted by different physicians.

Many do not require completely negative I-131 whole body scans and

absence of thyroglobulin when hypothyroid to define clinical success.

Fortunately, there are some patients treated with low doses of I-131

who may be effectively treated, particularly if they have minimal

disease and remnant to start with.

It is my clinical practice to use 100 mCi as my " minimal " I-131 dose

for initial ablation, using the clinical circumstances (defined by the

tumor pathology and the whole body scan findings) to delineate which

patient require higher doses (150 mCi or greater). My practice is

described in the following two references

1. Ain KB (1995) Papillary thyroid carcinoma: etiology, assessment, and

therapy. Endocrin Metab Clin N Amer 24, 711-760.

2. Ain KB (1997) Management of thyroid cancer. In: Diseases of the thyroid

(Braverman LE, ed.) pp. 287-317, Humana Press,Inc., Totowa, N.J.).

ThyCa members may wish to avail themselves of some library work.

The bottom line is to be aware of what literature is available (articles can be

quoted on both sides of every issue) and to know that this literature should be

weighed and evaluated, but not

accepted merely because it is " published. "

**************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.

Associate Professor of Internal Medicine

Director, Thyroid Nodule & Oncology Clinical Service

Director, Thyroid Cancer Research Laboratory

Division of Endocrinology and Molecular Medicine

Department of Internal Medicine, Room MN520

University of Kentucky Medical Center

800 Rose Street, Lexington, Kentucky 40536-0084

--------------------------------------------------------------------------------\

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

Dr. Ain letter, #2 ....

Subject: Re: Dr. Ain or Dr. Rolla -- Thyroglobulin

Date: Mon, 2 Nov 1998 17:40:14 -0500

Reply-To: thyca@...

To: thyca@...

{The following is a reposting of my earlier comments}

The thyroglobulin serves as a tumor marker for the presence of

differentiated

thyroid carcinoma, only in the context of previous total thyroidectomy and

radioiodine ablation therapy. This protein is a product of the thyroid

cancer cell. When the cell is stimulated by high levels of TSH (when

hypothyroid) it may produce more thyroglobulin. When the cell is not

exposed to TSH (when on levothyroxine therapy) it often produces little or

no thyroglobulin. For this reason, any thyroglobulin which is measurable

when taking levothyroxine (usually above 2-3 ng/mL) is significant for

persistent or recurrent cancer.

When taking levothyroxine, there may be thyroid cancer cells

present, but the low TSH levels do not permit them to release much

thyroglobulin. On the other hand, when hypothyroid (TSH levels greater

than 30), these cells are more likely to release enough thyroglobulin to be

measured in the blood (usually greater than 5 ng/mL).

In theory, patients with complete absence of thyroid cancer cells

should have undetectable thyroglobulin levels (less than or equal to 1.0),

both while hypothyroid and while on thyroid hormone. Thus, thyroglobulin

assessments are more sensitive when hypothyroid, but meaningful if elevated

whether on or off thyroid hormone.

Thyroglobulin is an independent marker for the presence of

residual thyroid cancer. Sometimes, the I-131 whole body scan is negative

although the thyroglobulin level is elevated (above 5-8 ng/mL). In this

situation, the patient has residual thyroid cancer, even though it is not

evident on the scan. Frequently, such a person may have a positive response to

I-131 therapy (> 150 mCi dose) with a positive post-therapy scan and decreased

follow-up thyroglobulin levels. Sometimes such a patient does not have a

response to radioiodine, indicating dedifferentiated tumor that no longer

takes up iodine. This type of patient is one of the topics of research in

our laboratory since new and different approaches are likely to be needed.

**************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.

Associate Professor of Internal Medicine

Director, Thyroid Nodule & Oncology Clinical Service

Director, Thyroid Cancer Research Laboratory

Division of Endocrinology and Molecular Medicine

Department of Internal Medicine, Room MN520

University of Kentucky Medical Center

800 Rose Street, Lexington, Kentucky 40536-0084

=======================================================

nellehodge wrote:

> Please, I need some input here. I was given a 3 mCi scanning dose on

> 12-12-01 and 48 hrs later I had a WBS on 12-14-01. I did the LID for

> 2 weeks. My TSH was 59.4 so I was hypo enough. Right after my scan

> the nuclear doctor came down and told me it was " clean as a

> whistle. " I came home and shared the good news on the list. Two

> weeks later, (Wednesday) my endo's office called me and said my tg

> was 13.4. She said she wants me to go hypo again in 6-9 months and

> have 100 mCi RAI this time. Last yrs. scan showed uptake in my neck

> and my tg was 20.1 so they gave me a low dose of 29.1 mCi. and said

> that should do the job. The yr. before that was my diagnosis,TT and

> I had an ablation dose of 27.4 mCi with a follow up scan.

>

> Am I just unlucky, or is there something else going on here that I

> should be really concerned about? My thought is that the 2 low doses

> just weren't enough. My current endo told me she would have dosed me

> with 100 mCi from the start.

>

> Why would my last scan be " clean " but my tg is 13.4? Could the 3 mCi

> scanning dose have washed out of my body before the scan? If so,

> wouldn't the nuclear doc. know that?

>

> I hate the thought of having to go hypo again for the 4th time! My

> endo told me that if I begged her she might let me have Thyrogen

> instead , but she really feels going hypo would have a better result

> with the higher abalation. Is that true? Since they know something

> is there, either tissue or cancer cells then why not use Thyrogen

> just for ablation with a follow up scan.

>

> I know I'm asking a lot of questions, and I have an appt. with my

> endo in April, so I plan on asking her the same questions, but I

> thought I'd try to get some input from the list.

>

> Thanks in advance,

>

> Ellen Hodge

>

> 47 yr. dx. 11-99 1 cm papillary w/ follicular var. encapsulated

> no mets, 27.4 mCi and scan 1-00

> repeat scan 12-00 with uptake in neck repeat dose 29.1 mCi tg 20.1

> repeat scan 12-01 " clean " tg 13.4

> future plan is 6-9 month hypo and 100 mCi ablation with follow up scan

>

>