Re: WHAT?!! - I131 resistant thyca???

[Guest guest]

I'm new to this and I apologize upfront for sounding

like I'm freaked out...but now I really am freaked

out.

My surgery is on Thursday and I'm not even pass those

anxieties yet. Now I am reading about RAI not being

an affective treatment. The whole RAI ablation thing

doesn't appeal to me but at least the trade off was

that it would get rid of the cancer. This is scary to

read about thyca that's not responding to RAI.

Alyssa, do you mind sharing with me what type of thyca

you have and how extensive? Why are the scans

negative but the TG so darn high? I have a 1cm nodule

and my TG is at 135. My endo was already surprised by

that. to have TG in the thousands and not have the

scan pick up anything? what do the doctors think?

What other options are available?

At my last visit with my endo, I was told that the

recurrence rate for papillary thyca is approximately

2% when caught early and treated promptly. I was

given an excellent prognosis as far as life

expectancy. However, I'm feeling pretty apprehensive

as I read the profiles of some of the members on this

list. It seems like the recurrence is much higher

then the 2% I was told. Now I'm reading about thyca

that's resistant to RAI. I'm really worried and

concerned now. Anyone has any light to shed on why

RAI won't work on some cancer?

pap ca.

--- Alyssa Dodd wrote:

>

> I'm one of those patients that has thyca cells that

> do not take up RAI

> so I guess EBR would be a possibility. BUT since

> there's no iodine

> uptake we can't use a I131 scan to find out where

> the thyca is (also CT,

> MRI, ultrasound, thallium whole body scan, and PET

> scan don't find it).

> It's definitely somewhere because tg when hypo is

> 2400. You can't do

> EBR, can you, unless you have a specific tumor

> location identified?

>

> -Alyssa in Idaho Falls

>

> Ellen Van Landingham wrote:

> >

> > papsydoo2000 wrote:

> >

> > > Hi. I was concerned about an earlier post that

> said it was a

> > doctor's

> > > opinion that RAI wasn't as effective on

> papillary cancers of the

> > > thyroid. My endocrinologist and surgeon both

> mentioned RAI as THE

> > > treatment for this kind of cancer. My RAI is

> scheduled for next week

> >

> > > and hearing this has heightened my anxiety. Can

> someone clarify?

> >

> > n,

> >

> > Most doctors agree that I-131 is the most

> effective treatment for

> > papillary thyca. Occasionally, patients have

> thyca cells that do not

> > take up RAI (but this can only be determined by

> giving the treatment).

> > In this fairly rare circumstance, external beam

> radiation may be

> > recommended. But for most of us with papillary

> thyca, an ablative

> > dose of RAI is the most effective treatment. I

> was diagnosed in 1989,

> > had one ablative dose of I-131 following a TT, and

> have been cancer-

> > free for 13 years.

> >

> > Your doctors sound as if they know what they're

> about. Unless your

> > post-treatment followup shows you to be one of the

> rare patients for

> > whom RAI is less than optimally effective, try not

> to let your anxiety

> > get the best of you.

> >

> > Good luck with your treatment,

> >

> > ellen

> > --

> > mailto:ellen@...

> >

> >

[Guest guest]

I'm new to this and I apologize upfront for sounding

like I'm freaked out...but now I really am freaked

out.

My surgery is on Thursday and I'm not even pass those

anxieties yet. Now I am reading about RAI not being

an affective treatment. The whole RAI ablation thing

doesn't appeal to me but at least the trade off was

that it would get rid of the cancer. This is scary to

read about thyca that's not responding to RAI.

Alyssa, do you mind sharing with me what type of thyca

you have and how extensive? Why are the scans

negative but the TG so darn high? I have a 1cm nodule

and my TG is at 135. My endo was already surprised by

that. to have TG in the thousands and not have the

scan pick up anything? what do the doctors think?

What other options are available?

At my last visit with my endo, I was told that the

recurrence rate for papillary thyca is approximately

2% when caught early and treated promptly. I was

given an excellent prognosis as far as life

expectancy. However, I'm feeling pretty apprehensive

as I read the profiles of some of the members on this

list. It seems like the recurrence is much higher

then the 2% I was told. Now I'm reading about thyca

that's resistant to RAI. I'm really worried and

concerned now. Anyone has any light to shed on why

RAI won't work on some cancer?

pap ca.

--- Alyssa Dodd wrote:

>

> I'm one of those patients that has thyca cells that

> do not take up RAI

> so I guess EBR would be a possibility. BUT since

> there's no iodine

> uptake we can't use a I131 scan to find out where

> the thyca is (also CT,

> MRI, ultrasound, thallium whole body scan, and PET

> scan don't find it).

> It's definitely somewhere because tg when hypo is

> 2400. You can't do

> EBR, can you, unless you have a specific tumor

> location identified?

>

> -Alyssa in Idaho Falls

>

> Ellen Van Landingham wrote:

> >

> > papsydoo2000 wrote:

> >

> > > Hi. I was concerned about an earlier post that

> said it was a

> > doctor's

> > > opinion that RAI wasn't as effective on

> papillary cancers of the

> > > thyroid. My endocrinologist and surgeon both

> mentioned RAI as THE

> > > treatment for this kind of cancer. My RAI is

> scheduled for next week

> >

> > > and hearing this has heightened my anxiety. Can

> someone clarify?

> >

> > n,

> >

> > Most doctors agree that I-131 is the most

> effective treatment for

> > papillary thyca. Occasionally, patients have

> thyca cells that do not

> > take up RAI (but this can only be determined by

> giving the treatment).

> > In this fairly rare circumstance, external beam

> radiation may be

> > recommended. But for most of us with papillary

> thyca, an ablative

> > dose of RAI is the most effective treatment. I

> was diagnosed in 1989,

> > had one ablative dose of I-131 following a TT, and

> have been cancer-

> > free for 13 years.

> >

> > Your doctors sound as if they know what they're

> about. Unless your

> > post-treatment followup shows you to be one of the

> rare patients for

> > whom RAI is less than optimally effective, try not

> to let your anxiety

> > get the best of you.

> >

> > Good luck with your treatment,

> >

> > ellen

> > --

> > mailto:ellen@...

> >

> >

[Guest guest]

Hi ,

>...(snip) My surgery is on Thursday and I'm not even pass those

> anxieties yet. Now I am reading about RAI not being

> an affective treatment. The whole RAI ablation thing

> doesn't appeal to me but at least the trade off was

> that it would get rid of the cancer. This is scary to

> read about thyca that's not responding to RAI.

(snip)

> At my last visit with my endo, I was told that the

> recurrence rate for papillary thyca is approximately

> 2% when caught early and treated promptly. I was

> given an excellent prognosis as far as life

> expectancy. However, I'm feeling pretty apprehensive

> as I read the profiles of some of the members on this

> list.

Hope my " profile " helps to adjust the balance. I had surgery for

papillary thyroid cancer in 1965. I had a 4.5 cm tumour and mets in

the cervical lymph nodes, but despite being incompletely treated - I

had a TT and RAI only 17 years later by which time it had recurred in

the lymph nodes - I am celebrating my 37th anniversary this month.

Although it is important to remain vigilant and to keep asking the

questions, if your endo had sound experience of thyca then I would

trust him on this one. The majority of cases are highly treatable and

do respond to RAI. There are exceptions, but there are also options,

and there are some very positive and hopeful stories on this website.

Good luck in your surgery.

Cheers,

Judith (usually in Holland but in Greece this week)

dx 1965 pap thyca T4-N1-M0

pt London Sep 1965

dx2 1982 recurrence in cervical lymph nodes

tt The Netherlands Mar 1982

rai Leiden, The Netherlands Apr 1982

clean scan Sep 1982

[Guest guest]

Hi ,

>...(snip) My surgery is on Thursday and I'm not even pass those

> anxieties yet. Now I am reading about RAI not being

> an affective treatment. The whole RAI ablation thing

> doesn't appeal to me but at least the trade off was

> that it would get rid of the cancer. This is scary to

> read about thyca that's not responding to RAI.

(snip)

> At my last visit with my endo, I was told that the

> recurrence rate for papillary thyca is approximately

> 2% when caught early and treated promptly. I was

> given an excellent prognosis as far as life

> expectancy. However, I'm feeling pretty apprehensive

> as I read the profiles of some of the members on this

> list.

Hope my " profile " helps to adjust the balance. I had surgery for

papillary thyroid cancer in 1965. I had a 4.5 cm tumour and mets in

the cervical lymph nodes, but despite being incompletely treated - I

had a TT and RAI only 17 years later by which time it had recurred in

the lymph nodes - I am celebrating my 37th anniversary this month.

Although it is important to remain vigilant and to keep asking the

questions, if your endo had sound experience of thyca then I would

trust him on this one. The majority of cases are highly treatable and

do respond to RAI. There are exceptions, but there are also options,

and there are some very positive and hopeful stories on this website.

Good luck in your surgery.

Cheers,

Judith (usually in Holland but in Greece this week)

dx 1965 pap thyca T4-N1-M0

pt London Sep 1965

dx2 1982 recurrence in cervical lymph nodes

tt The Netherlands Mar 1982

rai Leiden, The Netherlands Apr 1982

clean scan Sep 1982

[Guest guest]

Hi ,

>...(snip) My surgery is on Thursday and I'm not even pass those

> anxieties yet. Now I am reading about RAI not being

> an affective treatment. The whole RAI ablation thing

> doesn't appeal to me but at least the trade off was

> that it would get rid of the cancer. This is scary to

> read about thyca that's not responding to RAI.

(snip)

> At my last visit with my endo, I was told that the

> recurrence rate for papillary thyca is approximately

> 2% when caught early and treated promptly. I was

> given an excellent prognosis as far as life

> expectancy. However, I'm feeling pretty apprehensive

> as I read the profiles of some of the members on this

> list.

Hope my " profile " helps to adjust the balance. I had surgery for

papillary thyroid cancer in 1965. I had a 4.5 cm tumour and mets in

the cervical lymph nodes, but despite being incompletely treated - I

had a TT and RAI only 17 years later by which time it had recurred in

the lymph nodes - I am celebrating my 37th anniversary this month.

Although it is important to remain vigilant and to keep asking the

questions, if your endo had sound experience of thyca then I would

trust him on this one. The majority of cases are highly treatable and

do respond to RAI. There are exceptions, but there are also options,

and there are some very positive and hopeful stories on this website.

Good luck in your surgery.

Cheers,

Judith (usually in Holland but in Greece this week)

dx 1965 pap thyca T4-N1-M0

pt London Sep 1965

dx2 1982 recurrence in cervical lymph nodes

tt The Netherlands Mar 1982

rai Leiden, The Netherlands Apr 1982

clean scan Sep 1982

[Guest guest]

-

It is at the same time a blessings and a disadvantage to have members in

varying stages of various types of thyca and treatment; we get to read

about things that we will most likely experience, and about things we will

probably never go through.

I don't know about the 2% recurrence rate your endo refers to, but I would

certainly agree with the principle of his assurance. With early diagnosis

and prompt, thorough treatment, most of us will never have a recurrence.

Additionally, it's important to remember that while thyca is, for the most

part, very treatable, we must be monitored for life. Don't ever drop your

guard, thinking that it's something in your past that doesn't ever need

your attention.

Iodine resistance is not very common. When it IS present, it more often

than not develops over time (which is yet another reason to be adequately

aggressive in initial treatments). Please try not to worry about this;

you will make yourself crazy worrying about things that will most likely

never happen.

Try to focus on your surgery, and know that the vast majority of thycans

don't need repeated treatments.

We'll be waiting to hear how well your surgery went.

Good luck -

NYC

yvonne lee wrote:

> I'm new to this and I apologize upfront for sounding

> like I'm freaked out...but now I really am freaked

> out.

>

> My surgery is on Thursday and I'm not even pass those

> anxieties yet. Now I am reading about RAI not being

> an affective treatment. The whole RAI ablation thing

> doesn't appeal to me but at least the trade off was

> that it would get rid of the cancer. This is scary to

> read about thyca that's not responding to RAI. ......

>

>

> At my last visit with my endo, I was told that the

> recurrence rate for papillary thyca is approximately

> 2% when caught early and treated promptly. I was

> given an excellent prognosis as far as life

> expectancy. However, I'm feeling pretty apprehensive

> as I read the profiles of some of the members on this

> list. It seems like the recurrence is much higher

> then the 2% I was told. Now I'm reading about thyca

> that's resistant to RAI. I'm really worried and

> concerned now. Anyone has any light to shed on why

> RAI won't work on some cancer?

>

>

> pap ca.

>

>