New member

[Guest guest]

Hi Kim,

Welcome to the group. I am sorry you are here, but glad that you

found us. This is a wonderful group-everyone has been very supportive

and informative. Before I found this group I felt very isolated, but

now I have the strength and hope to go forward, one day at a time.

You are so right in that finding an A list doctor is very critical. I

had an operative hysteroscopy in July. The doctor was not on the A

list. The scarring has reformed. As soon as I came home from my hsg I

made an appointment on Oct.18 with an A list doctor.

Good luck with your recovery!

Take care,

[Guest guest]

Hi ,

I just saw Corinna's reply to your post. I had/have a moderate case

of AS. I was treated outside of my home state by an A-list doc.

However, I the doctor who originally diagnosed me via hysteroscopy

apparently did end up in the wrong place as Corinna indicated. He

believed that my uterus was totally fused and that I would not carry

a child with my uterus. Turns out that all of my scarring was at the

bottom of my uterus. My cervix was scarred over as well. My A-list

doctor (Dr. Indman) did allow that this sort of error can happen.

The other doctor, however, indicated that he wasn't able to get very

far during the diagnostic hysteroscopy due to the scarring. He also

said that he would have discovered the actual extent of my scarring

during the operative procedure (which I chose not to let him do as he

had limited AS experience). That your doctor says he's not seen AS

in 15 years is reason enough to seek out a more experienced doctor to

treat you. Again, sounds like Corinna gave you good advice on that

front.

Good luck! I wish you the best!!

J.

[Guest guest]

Hi ,

I just saw Corinna's reply to your post. I had/have a moderate case

of AS. I was treated outside of my home state by an A-list doc.

However, I the doctor who originally diagnosed me via hysteroscopy

apparently did end up in the wrong place as Corinna indicated. He

believed that my uterus was totally fused and that I would not carry

a child with my uterus. Turns out that all of my scarring was at the

bottom of my uterus. My cervix was scarred over as well. My A-list

doctor (Dr. Indman) did allow that this sort of error can happen.

The other doctor, however, indicated that he wasn't able to get very

far during the diagnostic hysteroscopy due to the scarring. He also

said that he would have discovered the actual extent of my scarring

during the operative procedure (which I chose not to let him do as he

had limited AS experience). That your doctor says he's not seen AS

in 15 years is reason enough to seek out a more experienced doctor to

treat you. Again, sounds like Corinna gave you good advice on that

front.

Good luck! I wish you the best!!

J.

[Guest guest]

Hi ,

I just saw Corinna's reply to your post. I had/have a moderate case

of AS. I was treated outside of my home state by an A-list doc.

However, I the doctor who originally diagnosed me via hysteroscopy

apparently did end up in the wrong place as Corinna indicated. He

believed that my uterus was totally fused and that I would not carry

a child with my uterus. Turns out that all of my scarring was at the

bottom of my uterus. My cervix was scarred over as well. My A-list

doctor (Dr. Indman) did allow that this sort of error can happen.

The other doctor, however, indicated that he wasn't able to get very

far during the diagnostic hysteroscopy due to the scarring. He also

said that he would have discovered the actual extent of my scarring

during the operative procedure (which I chose not to let him do as he

had limited AS experience). That your doctor says he's not seen AS

in 15 years is reason enough to seek out a more experienced doctor to

treat you. Again, sounds like Corinna gave you good advice on that

front.

Good luck! I wish you the best!!

J.

[Guest guest]

Amy,

First of all, welcome to the group. You have found a warm supportive

group of people who are all dealing with similar issues in learning what we

can do for our children and different ways to go about caring for those

special needs. If your son has make it so many years without major

problems, he sounds like a very intelligent boy.

As far as an fm system goes, there are others here who can advise

better than I can on getting that. I am blessed with being in a system which

has a FANTASTIC oral deaf program and we get all the support we need from

that program even though he is mainstreamed. While you have alot to deal

with now that you know this, I offer one bit of advice. Find out why he is

hearing impaired. I didn't know about my son's mild-severe loss until he was

5 although I knew there was a problem. I accepted his loss, followed advice

of family ENT and got hearing aids for him and started working with the

school on his needs. I never asked " WHY " . Eleven months later, I found he

had a significant hearing drop in one ear. His type of hearing loss is

progressive. I wish I had known sooner as there was a surgery we could have

had done sooner that MIGHT have stopped that loss.

I don't wish to cause any panic or added burden to you at all, just

passing along my story and what I learned. Best of luck, again, welcome to

the group, I hope you learn from everyone and feel the wonderful support I

have felt.

Sue Mother of

(11, hearing) and (9, HOH)

[Guest guest]

Amy,

First of all, welcome to the group. You have found a warm supportive

group of people who are all dealing with similar issues in learning what we

can do for our children and different ways to go about caring for those

special needs. If your son has make it so many years without major

problems, he sounds like a very intelligent boy.

As far as an fm system goes, there are others here who can advise

better than I can on getting that. I am blessed with being in a system which

has a FANTASTIC oral deaf program and we get all the support we need from

that program even though he is mainstreamed. While you have alot to deal

with now that you know this, I offer one bit of advice. Find out why he is

hearing impaired. I didn't know about my son's mild-severe loss until he was

5 although I knew there was a problem. I accepted his loss, followed advice

of family ENT and got hearing aids for him and started working with the

school on his needs. I never asked " WHY " . Eleven months later, I found he

had a significant hearing drop in one ear. His type of hearing loss is

progressive. I wish I had known sooner as there was a surgery we could have

had done sooner that MIGHT have stopped that loss.

I don't wish to cause any panic or added burden to you at all, just

passing along my story and what I learned. Best of luck, again, welcome to

the group, I hope you learn from everyone and feel the wonderful support I

have felt.

Sue Mother of

(11, hearing) and (9, HOH)

[Guest guest]

Amy,

First of all, welcome to the group. You have found a warm supportive

group of people who are all dealing with similar issues in learning what we

can do for our children and different ways to go about caring for those

special needs. If your son has make it so many years without major

problems, he sounds like a very intelligent boy.

As far as an fm system goes, there are others here who can advise

better than I can on getting that. I am blessed with being in a system which

has a FANTASTIC oral deaf program and we get all the support we need from

that program even though he is mainstreamed. While you have alot to deal

with now that you know this, I offer one bit of advice. Find out why he is

hearing impaired. I didn't know about my son's mild-severe loss until he was

5 although I knew there was a problem. I accepted his loss, followed advice

of family ENT and got hearing aids for him and started working with the

school on his needs. I never asked " WHY " . Eleven months later, I found he

had a significant hearing drop in one ear. His type of hearing loss is

progressive. I wish I had known sooner as there was a surgery we could have

had done sooner that MIGHT have stopped that loss.

I don't wish to cause any panic or added burden to you at all, just

passing along my story and what I learned. Best of luck, again, welcome to

the group, I hope you learn from everyone and feel the wonderful support I

have felt.

Sue Mother of

(11, hearing) and (9, HOH)

[Guest guest]

Becky, I am not well versed in the technical aspects of thyroid cancer but I

sure will send a hug to you and your son. In fact, many many many hugs.

Hugs all around!!!

Li and June

New member

> My name is Becky. I don't have thyroid cancer but my 16 year old son

> does. He was diagnosed with Follicular cancer on 11-14. He is having

> his second surgery on 12-2. Iodine radiation therapy after that. I

> would like to hear from anyone who will share their experiences. This

> is very scary for me as he is so young. Hopefully, someone can put

> mind at ease a little bit.

> Thanks to all.

> Becky

>

>

> For more information regarding thyroid cancer visit www.thyca.org. If you

do not wish to belong to this group, you may UNSUBSCRIBE by sending a blank

email to thyca-unsubscribe

>

>

>

[Guest guest]

Becky, I am not well versed in the technical aspects of thyroid cancer but I

sure will send a hug to you and your son. In fact, many many many hugs.

Hugs all around!!!

Li and June

New member

> My name is Becky. I don't have thyroid cancer but my 16 year old son

> does. He was diagnosed with Follicular cancer on 11-14. He is having

> his second surgery on 12-2. Iodine radiation therapy after that. I

> would like to hear from anyone who will share their experiences. This

> is very scary for me as he is so young. Hopefully, someone can put

> mind at ease a little bit.

> Thanks to all.

> Becky

>

>

> For more information regarding thyroid cancer visit www.thyca.org. If you

do not wish to belong to this group, you may UNSUBSCRIBE by sending a blank

email to thyca-unsubscribe

>

>

>

[Guest guest]

Becky, I am not well versed in the technical aspects of thyroid cancer but I

sure will send a hug to you and your son. In fact, many many many hugs.

Hugs all around!!!

Li and June

New member

> My name is Becky. I don't have thyroid cancer but my 16 year old son

> does. He was diagnosed with Follicular cancer on 11-14. He is having

> his second surgery on 12-2. Iodine radiation therapy after that. I

> would like to hear from anyone who will share their experiences. This

> is very scary for me as he is so young. Hopefully, someone can put

> mind at ease a little bit.

> Thanks to all.

> Becky

>

>

> For more information regarding thyroid cancer visit www.thyca.org. If you

do not wish to belong to this group, you may UNSUBSCRIBE by sending a blank

email to thyca-unsubscribe

>

>

>

[Guest guest]

Hi Becky,

I was diagnosed with thyroid cancer a little before my 16th birthday.

As in your son's case the primary tumour was follicular. I had

papillary cancer in the lymph nodes which led to a classification back

then of papillary thyroid cancer (pap thyca).

The treatment back then was far less thorough than it is now, and I

only had radioiodine therapy 17 years later, but I am still here

and healthy...37 years after I was first diagnosed!

Thinking back to the time of my first diagnosis, one of the hardest

parts was that no-one in my family wanted to talk about it. They

treated it as if it was all over after the operation except for

remembering to take my tablets for the rest of my life. I was even

sent out of the room for the final five minutes or so of each

consultation so that my doctors could talk privately with my parents.

So my first advice to you and your son would be to involve him

throughout. You say that he is " so young " , and we all want to protect

our children from anything bad, but at 16 he is old enough to

participate fully in all the discussions. Keeping anything back or

having discussions with doctors or relatives in which he is not

included will only make him suspicious and possibly a whole lot more

anxious than he would be otherwise.

I hope this helps, and please let us know how your son gets on. Don't

hesitate to write to me off list,

Good luck and best wishes,

Judith (British, living in Holland)

dx 1965 pap thyca (T4-N1-M0)

pt Sep 1965 London, England

dx2 1982 recurrence in lymph nodes

tt Mar 1982 The Netherlands

rai Apr 1982 Leiden, The Netherlands

> My name is Becky. I don't have thyroid cancer but my 16 year old

son

> does. He was diagnosed with Follicular cancer on 11-14. He is

having

> his second surgery on 12-2. Iodine radiation therapy after that. I

> would like to hear from anyone who will share their experiences.

This

> is very scary for me as he is so young. Hopefully, someone can put

> mind at ease a little bit.

> Thanks to all.

> Becky

[Guest guest]

Judith,

Thank you so much for responding to me. Your right, he is old enough to

participate in every aspect of the procedures. That is probably the best

advice I've received so far. He's a pretty strong kid. He's 16 going on

30.

I'm glad to hear everything is OK with you. How did you cope with being

Hypo before your radiation. I've read it's pretty bad. How was the

radiation for you? Any before procedure advice?

Reading everyone messages I've learned I need to ask a lot more questions.

All the different terminology and levels are a bit confusing.

[Guest guest]

Judith,

Thank you so much for responding to me. Your right, he is old enough to

participate in every aspect of the procedures. That is probably the best

advice I've received so far. He's a pretty strong kid. He's 16 going on

30.

I'm glad to hear everything is OK with you. How did you cope with being

Hypo before your radiation. I've read it's pretty bad. How was the

radiation for you? Any before procedure advice?

Reading everyone messages I've learned I need to ask a lot more questions.

All the different terminology and levels are a bit confusing.

[Guest guest]

Judith,

Thank you so much for responding to me. Your right, he is old enough to

participate in every aspect of the procedures. That is probably the best

advice I've received so far. He's a pretty strong kid. He's 16 going on

30.

I'm glad to hear everything is OK with you. How did you cope with being

Hypo before your radiation. I've read it's pretty bad. How was the

radiation for you? Any before procedure advice?

Reading everyone messages I've learned I need to ask a lot more questions.

All the different terminology and levels are a bit confusing.

[Guest guest]

Did you know that Thyca also has a pediatric email group?

Get the info/link from

http://www.thyca.org/email.htm

Good luck to him -- and to you -- during all this.

bj

New member

> My name is Becky. I don't have thyroid cancer but my 16 year old son

> does. He was diagnosed with Follicular cancer on 11-14. He is having

> his second surgery on 12-2. Iodine radiation therapy after that. I

> would like to hear from anyone who will share their experiences. This

> is very scary for me as he is so young. Hopefully, someone can put

> mind at ease a little bit.

> Thanks to all.

> Becky

>

[Guest guest]

Did you know that Thyca also has a pediatric email group?

Get the info/link from

http://www.thyca.org/email.htm

Good luck to him -- and to you -- during all this.

bj

New member

> My name is Becky. I don't have thyroid cancer but my 16 year old son

> does. He was diagnosed with Follicular cancer on 11-14. He is having

> his second surgery on 12-2. Iodine radiation therapy after that. I

> would like to hear from anyone who will share their experiences. This

> is very scary for me as he is so young. Hopefully, someone can put

> mind at ease a little bit.

> Thanks to all.

> Becky

>

[Guest guest]

I also signed up at the Pediatric site. No response there. I think the

last post was Oct. 16.

Thanks

Becky

Re: New member

Did you know that Thyca also has a pediatric email group?

Get the info/link from

http://www.thyca.org/email.htm

Good luck to him -- and to you -- during all this.

bj

New member

> My name is Becky. I don't have thyroid cancer but my 16 year old son

> does. He was diagnosed with Follicular cancer on 11-14. He is having

> his second surgery on 12-2. Iodine radiation therapy after that. I

> would like to hear from anyone who will share their experiences. This

> is very scary for me as he is so young. Hopefully, someone can put

> mind at ease a little bit.

> Thanks to all.

> Becky

>

[Guest guest]

I also signed up at the Pediatric site. No response there. I think the

last post was Oct. 16.

Thanks

Becky

Re: New member

Did you know that Thyca also has a pediatric email group?

Get the info/link from

http://www.thyca.org/email.htm

Good luck to him -- and to you -- during all this.

bj

New member

> My name is Becky. I don't have thyroid cancer but my 16 year old son

> does. He was diagnosed with Follicular cancer on 11-14. He is having

> his second surgery on 12-2. Iodine radiation therapy after that. I

> would like to hear from anyone who will share their experiences. This

> is very scary for me as he is so young. Hopefully, someone can put

> mind at ease a little bit.

> Thanks to all.

> Becky

>

[Guest guest]

I also signed up at the Pediatric site. No response there. I think the

last post was Oct. 16.

Thanks

Becky

Re: New member

Did you know that Thyca also has a pediatric email group?

Get the info/link from

http://www.thyca.org/email.htm

Good luck to him -- and to you -- during all this.

bj

New member

> My name is Becky. I don't have thyroid cancer but my 16 year old son

> does. He was diagnosed with Follicular cancer on 11-14. He is having

> his second surgery on 12-2. Iodine radiation therapy after that. I

> would like to hear from anyone who will share their experiences. This

> is very scary for me as he is so young. Hopefully, someone can put

> mind at ease a little bit.

> Thanks to all.

> Becky

>

[Guest guest]

Sorry Becky, I missed this when you

first posted it.

I've given RAI to 4 teenagers, all

of whom took to it easier than my

older patients did. Something to do

with youth? I don't know.

As long as he understands that the

treatment is not painful (it isn't)

he should be ok.

Ian

> My name is Becky. I don't have

thyroid cancer but my 16 year old

son

> does. He was diagnosed with

Follicular cancer on 11-14. He is

having

> his second surgery on 12-2.

Iodine radiation therapy after that.

I

> would like to hear from anyone who

will share their experiences. This

> is very scary for me as he is so

young. Hopefully, someone can put

> mind at ease a little bit.

> Thanks to all.

> Becky

[Guest guest]

Sorry Becky, I missed this when you

first posted it.

I've given RAI to 4 teenagers, all

of whom took to it easier than my

older patients did. Something to do

with youth? I don't know.

As long as he understands that the

treatment is not painful (it isn't)

he should be ok.

Ian

> My name is Becky. I don't have

thyroid cancer but my 16 year old

son

> does. He was diagnosed with

Follicular cancer on 11-14. He is

having

> his second surgery on 12-2.

Iodine radiation therapy after that.

I

> would like to hear from anyone who

will share their experiences. This

> is very scary for me as he is so

young. Hopefully, someone can put

> mind at ease a little bit.

> Thanks to all.

> Becky

[Guest guest]

I received 157 mi c, stayed in the hospital for 3 days. After the hospital stay

you are not in isolation, but you do need to take a few precautions. Use paper

plates and plastic forks for a week, don't share anything for a week, etc. Stay

away from women who are pregant for awhile also. At least that is what I was

told two years agao when I had my I131 treatment.

fred

Re: New member

Sorry Becky, I missed this when you

first posted it.

I've given RAI to 4 teenagers, all

of whom took to it easier than my

older patients did. Something to do

with youth? I don't know.

As long as he understands that the

treatment is not painful (it isn't)

he should be ok.

Ian

> My name is Becky. I don't have

thyroid cancer but my 16 year old

son

> does. He was diagnosed with

Follicular cancer on 11-14. He is

having

> his second surgery on 12-2.

Iodine radiation therapy after that.

I

> would like to hear from anyone who

will share their experiences. This

> is very scary for me as he is so

young. Hopefully, someone can put

> mind at ease a little bit.

> Thanks to all.

> Becky

[Guest guest]

I received 157 mi c, stayed in the hospital for 3 days. After the hospital stay

you are not in isolation, but you do need to take a few precautions. Use paper

plates and plastic forks for a week, don't share anything for a week, etc. Stay

away from women who are pregant for awhile also. At least that is what I was

told two years agao when I had my I131 treatment.

fred

Re: New member

Sorry Becky, I missed this when you

first posted it.

I've given RAI to 4 teenagers, all

of whom took to it easier than my

older patients did. Something to do

with youth? I don't know.

As long as he understands that the

treatment is not painful (it isn't)

he should be ok.

Ian

> My name is Becky. I don't have

thyroid cancer but my 16 year old

son

> does. He was diagnosed with

Follicular cancer on 11-14. He is

having

> his second surgery on 12-2.

Iodine radiation therapy after that.

I

> would like to hear from anyone who

will share their experiences. This

> is very scary for me as he is so

young. Hopefully, someone can put

> mind at ease a little bit.

> Thanks to all.

> Becky

[Guest guest]

I received 157 mi c, stayed in the hospital for 3 days. After the hospital stay

you are not in isolation, but you do need to take a few precautions. Use paper

plates and plastic forks for a week, don't share anything for a week, etc. Stay

away from women who are pregant for awhile also. At least that is what I was

told two years agao when I had my I131 treatment.

fred

Re: New member

Sorry Becky, I missed this when you

first posted it.

I've given RAI to 4 teenagers, all

of whom took to it easier than my

older patients did. Something to do

with youth? I don't know.

As long as he understands that the

treatment is not painful (it isn't)

he should be ok.

Ian

> My name is Becky. I don't have

thyroid cancer but my 16 year old

son

> does. He was diagnosed with

Follicular cancer on 11-14. He is

having

> his second surgery on 12-2.

Iodine radiation therapy after that.

I

> would like to hear from anyone who

will share their experiences. This

> is very scary for me as he is so

young. Hopefully, someone can put

> mind at ease a little bit.

> Thanks to all.

> Becky

[Guest guest]

Ian,

How long were they in isolation. I've heard you go home and stay in

isolation. How awful! I've been trying to read as much as I can about the

RAI because this is what scares him the most. I will let him know what you

said.

Thanks so much

Becky

Re: New member

Sorry Becky, I missed this when you

first posted it.

I've given RAI to 4 teenagers, all

of whom took to it easier than my

older patients did. Something to do

with youth? I don't know.

As long as he understands that the

treatment is not painful (it isn't)

he should be ok.

Ian

> My name is Becky. I don't have

thyroid cancer but my 16 year old

son

> does. He was diagnosed with

Follicular cancer on 11-14. He is

having

> his second surgery on 12-2.

Iodine radiation therapy after that.

I

> would like to hear from anyone who

will share their experiences. This

> is very scary for me as he is so

young. Hopefully, someone can put

> mind at ease a little bit.

> Thanks to all.

> Becky