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mkgbrook · 06-17-2008, 09:19 AM

Sorry to have been a bit lax in my series, but I have been researching and looking into a few things. One thing that has been of focus of late is the old RAI versus Thyroidectomy question. When should you do one versus the other? When do I need to look at killing off the thyroid by one of these means? The questions are endless and this is my research and take on the issue.

Facts on Nodules and Thyroid Cancer:
Thyroid Nodule Facts:
Between 4-7% of individuals in US statistical studies have palpable thyroid nodules. This doesn't mean only 4-7% get nodules.. it just means 4-7% can be felt by hand palpatation.

Nodules are more common in women.. DUH! Sorry that had to be typed! Women are 8x more likely to have a thyroid issue SO we would expect the nodule chances to remain at a similar ratio.

Nodules appear and manifest in an increasing frequency with increasing age. Thus the older you are the more likely one will develop.. OR if you have a nodule show up at say 32 (like me), expect more to come.. much more.

Fewer than 10% of nodules are malignant. RATIO: Papillary (75%), Follicular (15%), and 10% other (medullary or anaplastic). Solitary versus multinodular arrangements do not alter risk. Rates of carcinoma in a single nodule: 5-17% and in multinodular patients: 5-13%.

Risk factor increases with nodule size. Nodules less than 1 cm in any dimension are not consider of sufficient size to spread and be of significant risk. Once a nodule has a dimension of 1 cm, it should be monitored and biopsied every 6 months. Humm?? Well I am 32.. if I live to 75 that would mean I should have 86 biopsies of my thyroid.. I would think that a thyroidectomy would be more cost effective given a case such as that. I personally would rather have one yank and thank-you kindly sir session than CHRONIC stick and Poke.. but that is just MO.

Increased Risk Factors for Malignancy: Prior irradiation, family history of carcinoma, male sex, nodules in individuals between the ages of 25 and 65 years, symptoms of invasiveness: development of hoarseness, progressive dyshagia, or dyspnea.

Thyroidectomy Complications and Risks:
1 in 10 have a minor complication, while less than 1 in a 100 have a rarer complication. Risk is strongly related to surgeon's skill. Ask about the complication rate of thyroid surgery and make sure your surgeon performs at least 100 TT/PTs a year.

Several minor complications may result from thyroid surgery.

1) A postoperative seroma may form. These may be watched and allowed to resorb or if large enough they may be aspirated under sterile conditions.

2) Poor scar formation is another frequently preventable complication depending on surgeon's skill and technique. A surgeon that creates as small an incision as reasonable in a natural skin crease over the thyroid gland has the best results in minimal scar formation. A surgeon that makes to large and incision.. or too small an incision and damages the surrounding skin edges with excessive retraction is often the main source of bad scar tissue formation. The neck should be flexed to determine the location of the natural skin creases, surgery in a skin crease minimizes visibility and excessive scarring.

Rare complications
Case reports of rare complications, such as damage to the sympathetic trunk (parathyroids and larynx.. vocal cords), are occasionally reported in medical literature. Most of these are uncommon and can usually be avoided if the surgeon has good knowledge of the anatomy and sound operative technique. On average less than 1% have this complication.

Post Operation Issues
Common - Site tenderness and hypothyroidism symptoms.
Rare Major Complication- Postoperative bleeding presents with neck swelling, neck pain, and/or signs and symptoms of airway obstruction.

All in all a thyroidectomy just looks better to me.. IF you have a good surgeon.

MG

I have more.. you know me.

mkgbrook · 06-17-2008, 09:30 AM

Thyroid Carcinoma facts:
1) Thyroid Carcinoma makes up 1.5% of all newly diagnosed cancers.

2) The number of documented cases have been increasing over last 25 years. Occurrence increases may be due to improvement of analytical testing methodology, not an increase in genetic predisposition. Think about how hard it is to get our thyroid ills diagnosed today.. then think how hard it was 20 years ago.. *SHIVERS* Enough written on that.

3) There are 4.8 to 8.0 cases per 100,000 thyroid patients on average, depending on the statistical study reviewed.

4) There is a retained female predominance (11.7 female to 4.2 male cases/100,000), but the dominance is no longer 8 to 1. This ratio drops to 2.8 females to every male indicating an increased risk for nodular males to have a malignancy.

5) The death rate 0.5 cases per 100,000.

Overall not bad odds IMO. So hopefully that will calm any worries you have.

Definitions:
There are 4 major types of thyroid cancer -- papillary, follicular, medullary, and anaplastic. Differentiated tumors are highly treatable and usually curable. The common types of differentiated tumors are papillary or follicular. Treatment is a TT with follow up RAI. The prognosis for differentiated carcinomas (papillary or follicular) is better for patients younger than 40 years without extension of the tumor beyond the thyroid. So getting the bugger out earlier is better! Do not drag your feet and allow something to spread due to the inattention of your MD. Age appears to be the single most important prognostic factor, the younger you are the more aggressive you can be in treatment and thus the better your chances. Ages over 70 have issues with RAI and surgery complications.. so don't start panicking at the age of 50. Once a TT and RAI have been performed you should monitor your Tg levels every 3-6 months. An elevated serum thyroglobulin level after a TT and RAI correlates strongly with a recurrent tumor when found in patients with a previous history of differentiated thyroid cancer.

Poorly-differentiated tumors (medullary or anaplastic) are much less common, are aggressive, metastasize early.
Medullary thyroid cancer accounts for 5 to 10 percent of thyroid cancer cases (It varies on the statistical study reviewed so I am giving you a range). It arises in C cells, not follicular cells. Medullary thyroid cancer is easier to control if it is found and treated before it spreads to other parts of the body. There are studies linking the C cell cancer activity to genetic predisposition. My mom had C cells and was in a precancerous state. She had her bad lobe removed 14 years back now and is still doing fine. My thyroid developed a nodule last year and it has been growing steadily since. I go for my first FNA next week. We shall see what that holds. I can barely wait. I want it over and done with and my thyroid OUT!

Anaplastic thyroid cancer is the least common type of thyroid cancer (only 1 to 2 percent of cases). It arises in the follicular cells. The cancer cells are highly abnormal and difficult to recognize. This type of cancer is usually very hard to control because the cancer cells tend to grow and spread very quickly.

SO to make it simple if you have follicular of papillary in your biopsy report. That is a good thing. See it as such and embrace it is caught and removed before spreading you have a 99% survival and complete remission chance. If you have the other cancer and it is caught and removed early your chances are almost as good. When it begins to spread out side the thyroid you reduce to 50% 20 year survival rates. Still pretty good.

So that wraps up my definition lecture..

mkgbrook · 06-17-2008, 09:33 AM

Thyroid Physiological Function and Interaction: Your T4 and T3 and T2 and T1 are used in every cell in the body from the time you are in the womb til when you are six feet under. The thyroid is your metabolic overseer. In children with poor thyroid function the first hit noted is in growth hormones. Growth hormones work in bone formation and overall development of physic and maturity (sexual hormone development, etc.). Next thing that suffers in most cases is the basal metabolic rate (regulation of your body temperature.. just can not stay warm or cold.. etc). Third normally comes alone with body temperature dysfunction metabolic deprivation.. i.e. Low metabolism.. weight gain, etc. Fourth in line to be sacrificed to low thyroid function, your CNS (central nervous system) - brain maturation, memory recall, and retention. You don't need a good memory to live.. so your body focuses those rationed hormones to more important systems as you move into a more under active thyroid state.. LIKE your cardiovascular and respiratory systems. When you are getting pinged on all fronts.. watch out, you are in a severe state of thyroid dysfunction and need more hormone.

I am refining about 3 pages of RAI information and that will be my next post in this thread.

Two of my references are:
“The Evolving Role of 131I for the Treatment of Differentiated Thyroid Carcinoma”, Journal of Nuclear Medicine Vol. 46 No. 1 (Suppl) 28S-37S

“Empiric Radioactive Iodine Dosing Regimens Frequently Exceed Maximum Tolerated Activity Levels in Elderly Patients with Thyroid Cancer,” Journal of Nuclear Medicine Vol. 47 No. 10 1587-1591

So keep an eye out if you are interested in this topic.

MG

mkgbrook · 06-17-2008, 09:34 AM

Oh and you all should know by now.. this is a Care and Concerns thread.. SOOOO.. ANYTHING goes. I will give my 2 cents on almost anything.

So hop on and join in.
MG

NoThyroid4Me · 06-17-2008, 10:07 AM

Quote:

Originally Posted by mkgbrook

Thyroid Carcinoma facts:
The prognosis for differentiated carcinomas (papillary or follicular) is better for patients younger than 40 years without extension of the tumor beyond the thyroid. So getting the bugger out earlier is better! Do not drag your feet and allow something to spread due to the inattention of your MD.

Can you believe that I went to see my GP due to a small lump in my thyroid. She felt my neck and then proceeded to tell me it was normal. That one side of your thyroid can sometimes be bigger than the other and to not worry about it. I didn't worry about it for a while. It was, in the meantime, slowly growing until one day I felt like something was stuck in my throat. Looking at it again, it had grown quite a bit and, after seeing a DIFFERENT doctor, I had to have a TT due to Follicular Thyroid Cancer. It had grown to 6.5cm!!

Trust your instincts when it comes to your body. I kept trying to convince myself it was nothing because the stupid Doctor told me it was nothing!!

Thankfully I am ok so far and will get my first set of Labs taken on Friday and will see the Endo on the following Wednesday.
I just thought I would share that. I could not believe, after I went through surgery and everything That the doctor I had first seen let me sit on that lump for over a year.. and it was cancer. Go figure!!

mkgbrook · 06-17-2008, 10:17 AM

Thank-you for sharing! It is true. you have to trust yourself. it is your body.. not the MDs. You have to live with and in yourself. The MD is just doing their job. We are walking meat on the assembly line of health care. You get really good MDs that care and you also get the clock watchers. We all have has some of each I am sure.

As a paranoid OCD scientist and engineer that dreamed of being a Vet in my youth.. medicine fascinates me. I wouldn't make a good MD no tolerance level to deal with the run of the mill whining,

but I know how to solve a problem and get to its source.

Any illness is just a problem made up of a set of unknowns. You have to be willing to go through the tests and motions to find the source. Until you treat the source.. managing the symptoms is not going to get you any where. Most MDs follow a set frame of guidelines and do not take into account the individual. Looking at the broad picture is good for the flu or common cold.. but thyroids and the endocrine system need a more refined approach. I just wish that the MDs would get a full picture and look at the symptoms too! Our body's do not give out at age 30 just because they are NORMAL and fine.. COME ON.. where is the common sense.. WHOOPS! I went into rant mode, BUT I feel good now. Back to work.

MG

effected_orchid · 06-17-2008, 10:24 AM

Our body's do not give out at age 30 just because they are NORMAL and fine.. COME ON.. where is the common sense.. WHOOPS! I went into rant mode, BUT I feel good now. Back to work.

MMMMMMMMMM OK LOL YOU just sounded like my MD , he just added a few unmentionables to it.

mkgbrook · 06-17-2008, 10:48 AM

Great minds think a like! Pity your ENDO isn't on board with this MD.

MG

effected_orchid · 06-17-2008, 10:58 AM

Who knows....Maybe he is just real quiet and holds ALL the answers to "Happiness in Hypoland" HEHE I shall have my answer soon very very soon. In the meantime celiacs is ruled out, and the CT looked great.....

Heres a memory for you to picture. MY MD jumping up and down shaking the test results in his hand with a huge smile on his face saying " OK you bring him this and NOW he has to do something." I am off with a fist full of What it CAN NOT be.

mkgbrook · 06-17-2008, 11:02 AM

That was how I had to go about my old MDs. My current MD just keeps running the tests and giving me more fuel to the fire. Good luck and hopefully your MD has backed your Endo into a hole. So you think you will get T3 out of the deal.

MG

effected_orchid · 06-17-2008, 11:17 AM

I really really want to know what the blood works says. Do you know if I gave enough time after the contrast dye to have proper levels? 72 hours. They say 24 hours....but my body runs so slow I am thinking it probably takes longer.He also ran the B12. When things were going ok for a bit I was taking that every 3 weeks by injection. I have not had it now for probably 10 weeks or more. My B12 was only mid range with the 3 week injections, 100 without. Some bits are better. My mom was saying maybe I should focus on what bad instead of focusing on whats good. Atleast for the endos sake. But if you don't focus on the good it is real hard to get through a day!

mkgbrook · 06-17-2008, 11:49 AM

72 hours should be sufficient 5-7 days would have been a guaranteed no interference time frame. I think you played it safe. But that is just my personal opinion.. no MD license on my wall.

MG

mkgbrook · 06-17-2008, 11:54 AM

“Empiric Radioactive Iodine Dosing Regimens Frequently Exceed Maximum Tolerated Activity Levels in Elderly Patients with Thyroid Cancer,” Journal of Nuclear Medicine Vol. 47 No. 10 1587-1591

“The Evolving Role of 131I for the Treatment of Differentiated Thyroid Carcinoma”, Journal of Nuclear Medicine Vol. 46 No. 1 (Suppl) 28S-37S

The 1940's was when the art of RAI was introduced and began its roll in thyroid carcinoma treatment. The studies on the role of RAI and its effects are quite extensive and start as far back as the 1950's. Several groups in the United States and Europe began to formally evaluate the safety and efficacy of RAI at this time. Early investigation showed that the best iodine uptake occurred when the serum thyroid-stimulating hormone (TSH) was elevated. Not a mile stone assumption there.. the researchers determined that the best was to accomplish this effect and optimal RAI treatment was to withdraw patients from thyroid hormone and wait for the TSH to raise and balance out. What FUN! And they still do this to this day.

Side Effects and Risks of RAI:
1) The most common and clinically documented side effects of 131I treatment are usually considered minimal and transient in the form of nausea and gastric pain. The typical duration is in the 2 weeks after treatment with a duration of a few days, but note typical is not an absolute. Some have it occur for longer and periodic periods. It all depends on your body and how well it will handle the RAI.

2) Sialadenitis (FANCY almost impossible to pronounce term that means swollen spit glands) is common in the first few days after therapy. This is associated with pain and enlargement of salivary glands (spit glands.. drool pits.. you get the piture.. expect a soar dry mouth

) but rarely progressing to chronic xerostomia (Another medical term that means permanent dry mouth due to diminished or dead salivary glands). The treatment most Mds recommend normally takes the form of drink lots of fluids (spit stimulating fluids – lemon juice) and chew gum. There is no medical evidence that this is going to fix things.. but constant steady drinking should help with dry mouth.

3) The subsequent obstruction of salivary gland ducts may occur weeks to years later. In some cases patients experience periodic and sudden swelling, tenderness, and rarely infected salivary glands, most commonly the parotid gland. Ugh! This just sounds bad IMO.

4) Loss of taste (aka to Mds as dysgeusia) is a regular feature of post RAI treatment. Most commonly it only lasts a few days, but there are cases where the loss of taste is does not return completely. It would suck for chocolate to taste like dirty socks or something for the rest of your life.. I think it would give me serious depression to lose the taste of chocolate.

5) Ocular dryness (DRY EYES) and nasolacrimal drainage system obstruction (STUFFY NOSE AND BLOCKED SINUSES) have recently been reported in thyroid cancer patients treated with 131I .

6) In cases of large thyroid remnants neck edemas can manifest. Studies show edemas may be prevented by short-term corticosteroid therapy.

7) It is noteworthy that no respiratory sequelae (lung scar tissue) were observed after 131I treatments of diffuse lung metastases. The older you are the slower it is for you to purge that RAI. Patients over the age of 70 show the least tolerance to RAI exposure. These studies show that in older patients pulmonary complications do arise as a result of pooled or retained high RAI doses in lung metastases.

8) In males, repeated RAI administration is associated with an impairment of spermatogenesis (low sperm production = low sperm count = increased infertility), increased FSH levels, and decreased inhibin B levels. Testosterone levels seem to remain unchanged.

9) In females, RAI is shown to result in a transient ovarian failure, mainly in older pre-menopausal women, and an earlier onset of menopause. In addition there is an excess risk of breast cancer reported in females treated for a thyroid carcinoma by RAI.

10) The prevalence of these issues did not increase or change in cases of multiple exposure. One RAI is enough to increase your risk of the above issues. Now in females who desire to get pregnant, stidues have been extensive. There is no conclusive data showing that having an RAI before pregnancy effects the fetus AS LONG AS sufficient time is given to purge the RAI from your system. Issues arise when you conceive a child with in a year of having an RAI. Complications and issues with fetal development are maximized in females that did not wait a year post RAI to get pregnant. So it is well documented and recommended that females wait at least a year or longer after an RAI to attempt conception. It is also stressed that it can take a year or more post RAI until control of thyroid hormonal status has been achieved. So the Mds recommend that thyroid hormonal status should be carefully monitored (before conception and during pregnancy) post RAI to avoid hypothyroidism complications.

11) The results of many different studies of large groups of thyroid cancer survivors treated with RAI are also being monitored for an increased risk of solid tumors or leukemias. However given the study sets and parameter variations in the RAIs.. there is no definitive trend here and thus one must say it is inconclusive.

12) A large European study found an increased risk of all solid tumors in RAI thyroid cancer patients, and a site-by-site analysis found a relationship between RAI exposure and the occurrence of bone and soft tissue, colorectal, and salivary gland cancers. Studies are still on going to determine what sort of increased risk is caused by an RAI.

13) Since the introduction of RAI as a treatment of metastatic thyroid cancer in the early 1940s, repeated dosing is clearly documented to cause bone marrow depression.

14) Parathyroids have been known to take in RAI and die as a result of exposure as well.

MG

mkgbrook · 06-17-2008, 11:56 AM

Summary of Current RAI Preparation -

In general, levothyroxine is withdrawn 6 weeks and triiodothyronine is withdrawn 2 weeks before the RAI is performed.

The patient is also placed on a low-iodine diet in preparation for RAI scanning. This is going to put you into Hypothyroid Hades.

Then you are juiced with radioactive iodine. Your dose should be tailored to you, but some MDs go by a set standard that may be too much or too little depending on you.

Your thyroid starved for iodine and body starved for T4 takes the RAI and sends as much into the thyroid for T4 synthesis as the living tissue can take. The RAI then kills the tissue from the inside out.. make you more hypoT.

After a few days the RAI is supposed to flush from your system. While you are waiting for the RAI to do its thing you need to quarantine yourself. STOP during your radioactive glow phase

is 3-5 days in the hospital and another week or two away from children and pregnant women.

When the MD gives you replacement thyroid medication varies as well. So start you the second day.. others may start you in 2 – 8 weeks. It all depends on your MD and their training and practice. I would be pushing for thyroid hormone as soon as the hypoT symptoms struck. But that is just MO.

It is well known and documented in the medical literature that clearance of radioactive iodine is significantly impaired in patients with heart failure or renal insufficiency. So if there is a heart of kidney issue radioactive iodine is going to hang in the system longer that normal. This can increase radiation side effects and cause the need for increased quarantine measures.

Well that is what I have dug out of the two listed references and the NIH database. Ugh! That is a lot of side effects.

*wipes my brow* Wheew! Okay taking a break for a bit.
MG

effected_orchid · 06-17-2008, 12:04 PM

EWE Thanks MG I am now really thinking I DON"T KNOW!!!! My MD wants RIA I want TT and the Endo says it's not thyroid

As for the T3 my MD says until the endo kills the thyroid there is NO way for him to treat me properly. Fluxing way too much.

mkgbrook · 06-17-2008, 12:15 PM

Well I am not an unbaised RAi advocate. My family had bad experiences with them. I am pushing for a TT. I want to have a second child if i can. I have 3 years left to sort my self out.. can not lose a year to the radiation detox... plus with family history of iodine dye allergies.. I will only RAI if I have cancer. I just have to get all my MDs in a line on the TT. My ENT is the one to push. He gets a hand and few needles full of me next Thursday.

You just have to talk it through. Get the MD to look up all the details on RAI and long term side effects. Then tell him you have no issues with a scar and want the TT. It is your body. Stress the fact you have kids and elderly you are around and you do not want to risk them as well. There is no reason that you can not refuse the RAI and get the TT. Only the ENDO being unreasonable will hold things up.

I personally do not mind scars.. they are visible badges of honor. A war wound.. a thyroid war wound. Nothing to be ashamed of.. My mom has one, two of my Aunt's have, my Great Grandma and Great Great Aunt, and Great Aunt.. IT IS TRADITION. ME ME ME..

: MY TURN!

MG

effected_orchid · 06-17-2008, 12:33 PM

I have 2 scars on my face just done in March when things starting falling apart again. I seem to have black lesions on my face. Had them removed. Derm said it was rosacea I called and asked to see her again BECAUSE I now have black lesions growing out of the unhealed scar. I asked her if this could be thyroid related. She too said whats the big deal with thyroid JUST TAKE A PILL Ya well I am glad it's working for her. I still think it has to do with this fluxing craziness. I now have a bunch on my back. It looks like an exploded wood tick. SO really MY thought is JUST CUT IT OUT already. I hate the feel of this It's like I have a tie tied tight in the middle of my neck BLAH...i am working on getting my files from the DR that diagnosed me 16 years ago. I really want to see those labs mmmmmmmmmm Is history not fun. I want to get them before the 24th.that gives me 4 days........THE RACE IS ON!!!! I am back to the cold days and nite sweats. Temp is up at 98 and 99 it usually runs 95. bruises on the inside of my thigh. Have to pee ALL the time. head is clearer. BUT having mini panic attacks and fear of???? forgot something that kind of stuff.heart PALPS, head ache and blurred vision are a apart of normal life now. Good thing for ZOOM.

DR37 · 06-20-2008, 10:45 PM

Quote:

Originally Posted by mkgbrook

Risk factor increases with nodule size. Nodules less than 1 cm in any dimension are not consider of sufficient size to spread and be of significant risk. Once a nodule has a dimension of 1 cm, it should be monitored and biopsied every 6 months. Humm?? Well I am 32.. if I live to 75 that would mean I should have 86 biopsies of my thyroid.. I would think that a thyroidectomy would be more cost effective given a case such as that. I personally would rather have one yank and thank-you kindly sir session than CHRONIC stick and Poke.. but that is just MO.

LOL, I completely agree with you there. My biopsy was today and I WILL NOT do that twice a year for the rest of my life just waiting for them to turn into cancer. My friend had her nodule biopsied once a year for TEN YEARS before finally telling them to just take it out. She's much happier now, was even able to go off medication. She thinks that since they just removed one side, the other side started working better. Any other thoughts on this? Specifically for hypo people, did anyone get a partial TT and end up having their thyroid function better?

mkgbrook · 06-24-2008, 09:35 AM

Desert,

My mom had the PT. It removed the left half of her thyroid which was completely cold and showed up questionable on her biopsy. The half after biopsy was determined to be precancerous C-cell growth. They left her other half and it continued to meet her needs for about 13 years before Hashi's took it down. Her PT did make a huge difference, just like my two aunt's TT's. None in my family have done well with the RAI experiences. I will share my detailed account of my FNA on Thursday.

We can compare notes.

How long does it take to get the results from the FNA biopsy? Just curious. I am sure it varies depending on in house analysis or mail out service.

MG

DR37 · 06-24-2008, 06:03 PM

Mkg, my Dr.'s office called today with the results....rather to tell me they HAD the results and the Dr. wants to go over them with me in person. Does that sound bad?

I'm trying not to worry. Anyway, I go in on Thursday to find out the results, so best of luck to both of us!

And good to hear the stories of folks in your family and their experiences. Always helps to get more informed from people!

BTW, my biopsy was NOT super easy like a lot of people have said on here. Maybe it's because my growths are so large and mostly inside my lower neck. Dr. sent me to hospital for u/s guided biopsy because he couldn't reach them easily in his office. I don't know if that's why, but my neck STILL hurts when I cough and sneeze or lean my head back too far, and the biopsy was 5 days ago. :P Anyway, GL with yours! Post afterward and I'll commiserate with you!

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