Re: new to list; considering surgery

[Guest guest]

i am new to this group so i apologize for jumping in!... but before i let anyone take my thyroid out i would go and join the iodine group..some on there with confirmed thryoid cancer have used it to manage their disease...i should say the entire iodine protocol NOT just iodine..

From: Abela <abbie.music@...>thyroid treatment Sent: Tuesday, January 3, 2012 2:46 PMSubject: new to list; considering surgery

Hi all.

I'm new to this list and hail from the USA. My quick story: Diagnosed with Hashimoto's 2007 and (finally) stable. Hurrah! not jittery nor sleepy [Ed]

-- Regards, Abbiec 240-988-5394Our brilliance, our juiciness, our spiciness, is all mixed up with our craziness and our confusion, therefore it doesn’t do any good to try to get rid of our so-called negative aspects, because in that process we also get rid of our basic wonderfulness. ~ Pema Chodron, The Wisdom of No Escape and the Path of Loving-Kindess, 1991, p. 7

[Guest guest]

Dear

Abbie

Such

a decision can be so difficult for patients such as you. Dr Peatfield, one of

our medical advisers, wrote:

Thyroid

cancer can occur in all age groups. People who have had radiation therapy to

the neck are at higher risk. This therapy was commonly used in the 1950s to

treat enlarged thymus glands, adenoids and tonsils, and skin disorders. People

who received radiation therapy as children have a higher incidence of thyroid

cancer.

Most

distressing can be marked enlargement of the thyroid, which may be symmetrical

or asymmetrical. Thus, the goitre may be due to a number of factors. Iodine

deficiency will cause chronic enlargement; but this is rarely seen today, except

in remote inland areas. Many people develop a diffuse, usually soft

enlargement, especially teenage girls, with no real symptoms requiring

attention. Sometimes, these quietly disappear, but they may progress to become

rather harder and with lumps and nodules over the years. It is then called

multi-nodular goitre, and may be inconvenient or unsightly. At this point,

medical advice should be sought. X-rays and ultrasound may show its full

extent, and whether further tests or intervention is required. Once such is the

use of radioactive iodine, which is taken up to a greater degree by the

abnormally active thyroid nodules and will show up as hot spots on a thyroid

scan, providing a picture of the thyroid tissue health.

It

is more common for the thyroid to present a nodule as a lump one side or the

other. Many of these patients will have had the full thyroid function tests,

but most often will have the nodule drained by a fine needle (fine needle

aspiration (FNA) for the technically minded). The fluid and cells are subjected

to microscopy. At this point, cancer cells may be looked for, which is why a

growing nodule is not something you should try to deal with yourself.

Fortunately, cancer is really quite rare and has a very high survival rate (95%

overall); the average practice may not see more than one case every few years

or so.

For

the sake of completeness, I am going briefly to list the types of thyroid

cancer that occur. Early on in life, and in young women, the cancer is likely

to be papillary cancer (from its frond like appearance under the microscope).

Later on in life, after about the age of 30, the cancer is more likely to be

follicular cancer. Much rarer are medullary, lymphoma, or anaplastic cancer,

the last two really only occurring in older age groups.

Symptoms

of Thyroid Cancer

Most

commonly, thyroid cancers in the early stage produce no symptoms. As the cancer

grows, a small lump or nodule can be felt in the neck. The vast majority of

thyroid nodules are caused by benign conditions, but about one per cent of

these lumps represent early stages of thyroid cancer. If the cancer spreads, it

can cause symptoms that include:

A

lump—sometimes growing rapidly—in the front of your neck, just

below your Adam's apple Hoarseness or difficulty swallowing

Trouble

breathing

Swollen

lymph nodes, especially in your neck

Pain

in your throat or neck, sometimes spreading up to your ears

Cough–or

cough with bleeding

Having

one or more of these symptoms doesn't necessarily mean you have thyroid cancer.

Other conditions—including a benign thyroid nodule, an infection or

inflammation of the thyroid gland and a benign enlargement of the thyroid

(goitre)—can cause similar problems, all of which are highly treatable.

Treatment

of Thyroid Cancer

Treatment

is essentially surgical; the whole gland is removed, together with any

associated glands with papillary cancer; some tissue may safely be left in

surgical treatment of the follicular form. Any stray cancer cells are mopped up

by a course of radioactive iodine a few weeks after the surgery and before

thyroid replacement has been started. It is considered good practice to prevent

thyroid stimulating, as by the TSH, to prevent recurrence; so thyroid

replacement ensures the TSH is kept very low.

A

physical examination can reveal a thyroid mass or nodule (usually in the lower

part of the front of the neck), or enlarged lymph nodes in the neck.

Tests

that indicate thyroid cancer:

Thyroid

Biopsy showing anaplastic, follicular, medullary or papillary cancer cells

Ultrasound

of the thyroid showing a nodule

Thyroid

Scan showing cold nodule (a nodule that does not light up on scan)

Laryngoscopy

showing paralysed vocal cords

Elevated

serum calcitonin (for medullary cancer) or serum thyroglobulin (for papillary

or follicular cancer)

This

disease may also alter the results of the following tests: TSH, T4 and T3.

People

with thyroid cancer often want to take an active part in making decisions about

their medical care. They want to learn all they can about their disease and

their treatment choices. However, the shock and stress that people may feel

after a diagnosis of cancer can make it hard for them to think of everything

they want to ask the doctor. It often helps to make a list of questions before

an appointment. To help remember what the doctor says, patients may take notes

or ask whether they may use a tape recorder. Some also want to have a family

member or friend with them when they talk to the doctor—to take part in

the discussion, to take notes, or just to listen.

The

doctor may refer patients to a specialist (oncologist) who specialise in

treating cancer, or patients may ask for a referral. Specialists who treat

thyroid cancer include surgeons, endocrinologists, medical oncologists, and

radiation oncologists. Treatment generally begins within a few weeks after the

diagnosis. There will be time for patients to talk with the doctor about

treatment choices, get a second opinion, and learn more about thyroid cancer.

The

following are some questions you may want to ask your doctor before treatment

begins:

What

type of thyroid cancer do I have?

Has

the cancer spread? What is the stage of the disease?

Do

I need any more tests to check for spread of the disease?

What

are my treatment choices? Which do you recommend for me? Why?

What

are the benefits of each kind of treatment?

What

are the risks and possible side effects of each treatment?

How

will the treatment affect my normal activities?

Would

a clinical trial (research study) be appropriate for me? Can you help me

find one?

I

hope this helps.

Luv

- Sheila

I'm new to this list and hail from the USA. My

quick story: Diagnosed with Hashimoto's 2007 and (finally) stable.

Hurrah! not jittery nor sleepy (Lithium effected my thyroid, my TSH

reached 60--and discovered the hypothyroidism. Anxiety/depression had

made it very hard to stabilize.

So now: After my spring ultrasound, the endo recommended

a biopsy, given that I now had a nodule of 2cm and my father's history of

malignancy 40 years ago(and successful total thyroidectomy and

parathyroidectomy.).. A June biopsy was " inconclusive " and the

December was " suspicious for papillary carcinoma " .

A 2nd pathologist (my SO works in an histology lab as

technician, so the pathologist there--who has published re thyroid--reviewed my

slides). He referred to a " folicular lesion " and suggested I

wait and see--and have more scans, etc. " this is what he'd tell his

wife " ... So, I saw a surgeon (ENT) last week who

recommended a total TT in agreement with my endo. The surgeon said

that even if I wait, whether the nodule grows or doesn't, it will

still be pretty much the same picture; that FNBs just can't give the whole

picture. When I said it might just be a big nothing, and asked, Should I

hurry to have surgery, he said that 80% of people in my situation decide to

have the surgery and thought I should have it.

I realize that some (most?) of you are in the UK, and with NHW, things are very

different (including how quickly folks have such surgeries).

However, I thought some you might have some stories to share--experience,

strength, or even hope ?

Signed,

[Guest guest]

Hi Abbie

I know what you are going through at the moment as I was in your situation and I

wanted to send you a big hug x

I was diagnosed with Follicular Carcinoma in January 2006.

I had several Fine Needle Aspirations (FNA) which came back " inconclusive " or

" insufficient " , all this over a period of a couple of years. During this time I

became pregnant and had my son - who is now 6. There seemed to be no urgency

and I was even sent a letter from my surgeon saying that the " nodule was

suggestive of a cyst "

My surgeon monitored me and the nodule kept growing so I was given the choice to

have surgery or accept that I had a thyroid nodule and just get on with it but

surgery would be the only way of knowing if it was cancer.

The surgeon certainly didn't seem concerned and I was told that out of 100

hundred surgeries, only 10 would be malignant.

He almost made me feel like I was wasting his time, telling me that he had

another lady like me and she had decided to go away and get on with it! I often

wonder about that lady now.

I personally could not live not knowing whether it was cancer or not, but it was

a very difficult decision and I was very scared - my son was only 7 months old,

and I'd never had surgery before. The surgery was classed as elective.

I had half of my thyroid removed first - the side with the nodule on. It was

then tested and confirmed as cancer so I had a second operation and had the

other half removed - total thyroidectomy. I then had the radio-active iodine

ablation radiotherapy to kill any residue thyroid tissue off - minimising the

risk of reoccurence.

I can see why they did the partial removal as if it wasn't cancer then I would

still have some thyroid gland left, and this can be enough to live on - I didn't

need thyoid medication after the first operation and the second operation was

three months later.

Obviously having to have a second operation was awful, but now I know more about

how important the thyroid gland is, it was the right decision to remove half and

not all of it in the first operation.

This was in 2005/2006 and things may have moved on now and it may be different

in the USA and you will get different people/doctors with different opinions,

but only you can make the decision and have to live with the decision. I think

the prospect of cancer is really scary and when Doctors say " they would leave

it " - would they if it were them?

I'm really struggling with the balancing of my thyroid meds, and ironically I

feel really ill now compared to when I had the cancer - but for me I made the

right decision. You are probably more aware than I was at the time, as you have

Hashis, on how difficult it can be to balance the meds and cope with the

symptoms of hypothyroidism.

I'm so sorry you're going through this and hope whatever you decide is right for

you and please know that we are here to support you x x

Love and best wishes

Kerry x

>

> So now: After my spring ultrasound, the endo recommended a biopsy, given

> that I now had a nodule of 2cm and my father's history of malignancy 40

> years ago(and successful total thyroidectomy and parathyroidectomy.).. A

> June biopsy was " inconclusive " and the December was " suspicious for

> papillary carcinoma " .

>

> A 2nd pathologist (my SO works in an histology lab as technician, so the

> pathologist there--who has published re thyroid--reviewed my slides). He

> referred to a " folicular lesion " and suggested I wait and see--and have

> more scans, etc. " this is what he'd tell his wife " ... So, I saw a surgeon

> (ENT) last week who recommended a total TT in agreement with my endo. The

> surgeon said that even if I wait, whether the nodule grows or doesn't, it

> will still be pretty much the same picture; that FNBs just can't give the

> whole picture. When I said it might just be a big nothing, and asked,

> Should I hurry to have surgery, he said that 80% of people in my situation

> decide to have the surgery and thought I should have it.

>

> However, I thought some you might have some stories to share--experience,

> strength, or even hope ?

>

[Guest guest]

My TT surgery scheduled 1/13! So, all any other feedback??

Thanks to both of you. Such quick scheduling due to opening from cancellation.

Rcv'd report 12/9 (after 12/1 FNB) and recommendation that I have to have tt).

My decision was just early this week!

The good stuff: My endo says, maybe NO change in meds (per already on 100 mcg

due to " Hashis " (ha ha, could also be hashish.) May not be tired/hypo.

Nonetheless, fear normal... But I'm special... (LT history anxiety; this week

had on/off extreme anxiety. Appropriate. Yes! I'm reparing for major surgery

since 1960 tonsillectomy, unexpected experience 1/13.

I'm well informed, Could be easy surgery. Plus could be benign. May only

need to go through surgery and post surgery discomfort.

Or could be very crappy experience--w/ complications, with parathyroid issue,

voicebox, extr pain. Surgeon expects I'll be sent home by evening ($). But

seemed lackadaisical. Endo younger, more communicative but thorough visavis

explaining.

My plan: expect the best, be cooperative, listen, let them take care of me...

Take earplugs! I'm a little bit too much the defensiv and agressive consumer.

Especially if anxious. Also, no need to rush home unless they push me out! My

SO works in histology lab, so is very clinical, detached.

Abbie

(are you all from UK?)

>

> >

> > So now: After my spring ultrasound, the endo recommended a biopsy, given

> > that I now had a nodule of 2cm and my father's history of malignancy 40

> > years ago(and successful total thyroidectomy and parathyroidectomy.).. A

> > June biopsy was " inconclusive " and the December was " suspicious for

> > papillary carcinoma " .

> >

> >

[Guest guest]

Hi Abbie, you

seem to have got the right frame of mind and there is nothing else now but to

go forward and to be positive. I am sure everything will work well for you and

that you will be on the road to a full recovery.

My sister had

a total thyroidectomy, more years ago than I can remember - she had a thyroid

storm - didn't even know she had a thyroid problem, right out of the blue.

Rushed into hospital 2.00a.m. and had her hole thyroid gland removed

immediately. She was started on 100mcgs levothyroxine which never did her any

good and then found Armour Thyroid and she is still taking NDT. We will all be

thinking of you - and no, we are not all from the UK. This group started in the

UK, but is now completely International.

Luv and big

(((HUGS))) - Sheila

My plan: expect the best, be cooperative, listen, let them take care of me...

Take earplugs! I'm a little bit too much the defensiv and agressive consumer.

Especially if anxious. Also, no need to rush home unless they push me out! My

SO works in histology lab, so is very clinical, detached.

Abbie

(are you all from UK?)