Re: Re: Question about familial papillary carcinoma

[Guest guest]

Hi Gail,

Thanks for your note and Happy New Year! I haven't

responded sooner because I had surgery last Friday and

have been recovering from that. Everything went well

with the surgery - my surgeon said he went down my

trachea on both sides past my clavicles and removed

more lymph nodes. He went through the same scar from

my TT which was good. My voice is a little raspy

still, which didn't happen with the first surgery.

I'm hoping that will pass.

One of my sisters is starting her RAI treatment in a

few days. My other sister is recovering from her TT

surgery, and my brother is due for surgery the end of

February - possibly for a TT as well. We are all

hanging in there.

To answer your question about where we grew up the

town is Monroe, New York which is about an hour NW of

NYC and West of the Hudson River. Also, I did have an

RAI done in August - a few months after my TT. At

that time they felt sizable nodules from additional

lymph nodes.

My surgeon gathered blood samples from my siblings and

I so that he can do a gene study. Hopefully he will

be able to find something to help answer our

questions.

Theresa

--- fotoladyx2 wrote:

> Hi Theresa,

>

> Welcome to Thyca!

>

> Your family situation is most unusual particularly

> since you were all

> diagnosed within a fairly short time of each other.

> There have been a

> few members with siblings with thyca on this list.

> I have forwarded

> your letter to one of the members in hopes that she

> will answer you. I

> believe there are 3 in her family.

>

> I can well imagine the shockwaves running through

> the family. You did

> not mention how much RAI you had nor if you had it

> immediately after

> your first surgery. It sounded like there was more

> than a years delay

> before you had RAI? Also, the amount of the RAI dose

> can affect the

> success of the treatment.

>

> I think it might be interesting to go to the health

> board in the

> community that you grew up in and see if there is

> more data on thyroid

> cancer incidences. Someone may be interested in

> researching the area

> for contamination. Since thyroid cancer can be

> present for as much as

> 15 years prior to being diagnosed, it would mean

> that you all developed

> the disease around the same time. Why? Maybe it is

> genetics, but I

> tend to think it may be exposure to some outside

> situation. I would be

> interested in knowing the exact town in NY because I

> am in contact with

> a researcher who works on this sort of thing with

> regard to a

> particular contaminate.

>

> I can't speak to familial papillary but perhaps one

> of our doctors can.

>

> I think the concern you should all have is that each

> of your doctors

> follow you and treat you aggressively so that you

> can keep your disease

> under control. If you are going to worry that you

> are going to have a

> more difficult time with this disease than most

> patients, it will only

> serve to unnerve you. You need to think positive!

> Be very vigilant

> with follow up and try to be patient. Patience is

> the hardest thing to

> practice with cancer, but with thyroid cancer very

> little happens

> quickly.This is a very individualized disease.

> Although your siblings

> also have thyca, you may not all have the same

> recurrance or

> surgeries.You all need to understand that so that

> one persons

> recurrance (yours) will not be expected by all.

> Again, vigilance is the

> key!

>

> There is lots of information available on this list

> so please ask all

> the questions you want.

>

> Gail

> dx: 1968, TT, pap. & foll. well differentiated, RAI,

>

> rad.neck dissection,lung surgery, hashimoto, high

> antibody

> count, iodine resistant,existing thyca nodules in

> lungs.

> Last surgery 1972

>

>

>

> >

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