Newly Diagnosed and Have Some Questions

[KJ5854]

Hi all!  I am new to everything that is thyroid.   I'm glad I found this forum.  I would like to get your opinion, thoughts, advice on my situation.  I'll try not go on too long but want to put in all the important details.

First, I'm a 39 year old female.  I was recently diagnosed with Hashimoto's Thyroiditis.  I actually was having a routine carotid artery ultrasound done as part of a health screening.  During the ultrasound the technician asked if I'd ever had an ultrasound of my thyroid.  I said no and she said that I had some "goiters" (i'd never heard of such a thing) on my thyroid.  She mailed me the ultrasound pics and my family doctor reviewed them and suggested a thyroid ultrasound.  I had that done and the report came back showing a "complex 13mm right upper lobe mass" and an "18mm right lower lobe mass" and several small bilateral masses.  The report, and my ENT doctor, recommended a fine needle biopsy.  

I had the FNA done on December 5th.  At this appointment, they did a thyroid ultrasound first and determined I had six areas that could be biopsied but they could only biopsy four.  They biopsied all four.  Results showed:
- Left Upper Lobe Vascular mass 8 x 15 x 7mm - Hashimoto's with probably co-existent nodular goiter
- Right Calcified Upper Lobe Mass 6 x 13 x 9mm - Atypia, Suspicious for Malignancy, Hashimoto Thyroiditis.  Comment:  Focal cytolgoic atypia is present and likely represents a tiny focus of papillary carcinoma of the thyroid.
- Isthmus Mass 7 x 8 x 4 mm - Nodular goiter with possible coexistent Hashimoto's Thyroiditis
- Right Lower Lobe Mass 16 x 19 x 15 mm - Nodular Goiter, Colloid Rich with Focal Hyperplasia.  Hemosiderin containing Histiocytes seen - suggests recent hemorrhage.
Based on the above they recommended surgical biopsy of the calcified, right upper lobe.

My ENT doctor said that there is an 80% chance that the cells they found in the right upper lobe are cancer.  He suggested, that becauase I have Hashimoto's thryroiditis anyway, that we remove my entire thyroid.  

Just a side note, I've been experiencing pain on the left side of my face and neck for two years and three months.  When it started over two years ago it was excruciating.  I went to numerous doctors trying to find out what was wrong.  These included a family doctor, a dentist, two neurologists, and twp ENT doctors.  I had blood tests, MRI's, ultrasounds etc. and no diagnosis.  They put me on anti-depressants for a month but they whacked me out so much I quit those.  Now, I've discovered that it was my thyroid all along.  I'm glad to finally have a dianosis.  I realize that looking at the symptoms of Hashimoto's I have 75% of those symptoms.  Hair loss, being colder than normal, carpel-tunnel, dry and course hair, fatigue, weight gain, irregular menstrual cramps, low sex drive, light-headedness, and a few more.  I was diagnosed back in October as being insulin resistant.  My insulin was through the roof.  151 when 28 is the high for normal.  I change my diet and exercise and lost 15 pounds since then and now my insulin is 17.  

Here are my questions to you?
- Is a "calcified" lobe mass indicitive of cancer?
- Is removing the entire thyroid the best treatment for this?  Or, should I start with removing the suspicious lobe and test for cancer first?
- Is the insulin resistance related to the Hashimoto's?

I'm concerned that I've had this Hashimoto's for years now.  I believe the cells are probably cancerous and if that's the case my entire thyroid will have to be removed right?  The longer you live with Hashimoto's does the chance that you'll get thyroid cancer increase?

Thanks for reading all this.  Sorry if I rambled  I would really LOVE any opinions. thoughts, advice etc. relating to my situation.

Merry Christmas all!

[utahmomma]

Oh my gosh, another person in the club!!  I'm so sorry.  Your papillary carcinoma is the same size as mine too.  Another member of my family I didn't know about?!?!  :-)

Yeah, my endo (the one I fired, BTW) wanted to just watch the other half of my thyroid after my Rt lobectomy.  I was going to blindly follow his advice until everyone else in my family was diagnosed with papillary carcinoma (or precancerous thyroid) over the next 12 months. Opting for the 2nd surgery was a huge leap for me - even though my first surgery went so well.  I knew there were no nodules in the left half but I also knew of the chances of microcancers and the fact I wouldn't be able to have RAI with 1/2 of a thyroid.  The second surgery was even easier than the first (although the surgeon said it was much "stickier" than the first half).  The scar actually looked better after the second surgery.  The only difference between the two (same hospital, same surgeon, same surgical team, same anesthesiologist) was my surgeon used a harmonic knife the second time.

I had CTs and MRIs of my neck area before and after (for herniated discs).  In fact my nodule was found on an unrelated full-body scan (CT).  Other than the nodule, none of my cancer has shown on any MRIs or CT scans.  Even the "very bright spot of uptake" in my sinus during last month's RAI scan.   Don't know about the PET - I'd love to have one but my insurance isn't so generous.

From what I've been told by my friends in the medical profession - it's often more difficult to deal with your own diagnosis when you work constantly with worst-case scenarios.  Please remember that - especially since you work in oncology.  As you know papillary carcinoma is very treatable.

Are you leaning towards heal then have another surgery or watch and see???  BTW, when my *former* endo told me to "wait and see" with my remaining thyroid lobe I just called the surgeon directly and scheduled my second surgery.  She did my surgery (2x), my 4 sisters, and my daughter's surgery so she understood completely why I needed to get it out.  Good thing I did - the recurrence warranted RAI.

Hang in there - you've got us to lean on.

[Nursey34]

I'm 34 yrs old and have been following left and right thyroid nodules for about 7 years.  The right side ones shrunk away but the left kept growing.  I had scans in the past, many needle biopsies (all neg), and followed with US and blood work yearly.  This summer, this left lobe starting bothering me more.  I could always feel it but now it was beginning to make it hard to swallow, turn my head to the left or down without having trouble breathing.  I got in to my endo and asked to have it out.  I saw a surgeon and had the left lobe removed with the isthmus on 12/19.  I went into this with them all telling me it was benign, looked benign during surgery by look and path.  But yesterday I found out it was papillary carcinoma.  The tumor was .5cm inside my 2.6cm nodule.  I was shocked as hell!!! I've been an oncology nurse for 12 years and have seen the worst of the worst.   Now I have to have the other side removed and possible radioactive iodine.  I'm worried that my endo will say just to watch it.  I just have that feeling from his email.  I haven't heard from my surgeon, didn't bother to call me.  I found out myself.  So being a nurse at a cancer hospital, I will push for everything.  Did anyone here have scans CT's PET etc prior to the surgery or after.  I didn't have any scans this year except for a normal CXR prior to surgery.  Not looking forward to another surgery as I'm 8 days out of my last one (did pretty well after the first couple of days).  Also have twin 5 year olds.  Have good family and husband support and very supportive coworkers. Would like to know more about further staging of folks with scans and their level or stages of disease.
Thanks!
Nursey

[utahmomma]

You know when I saw the nodule on my ultrasound I decided to be aggressive and just get it out.  It was only recommended I had the right side out (since that is where the nodule was) and, at that time, I had no family history of thyroid cancers.  Wow, what a difference a year made!  :-)    Looking back I should have just had the entire thing out instead of having two surgeries but you never know until it's over what the outcome will be.

It's a tough decision but you are right, there is a possibility that there are other microcancers elsewhere in the thyroid.  Many on this forum (and some of my sisters) found that out too.

Please keep us posted and best of everything to you!!

[KJ5854]

Thanks so much for your response and support!    I believe I only have two options.  First option is just remove the nodule that has the suspicion of cancer to determine if it or is not cancerous.  If it is, then I'll have to have the entire thyroid removed.  Second option is just to go ahead and have the entire thyroid removed during surgery since I have Hashi's and will have to deal with taking medicine for that for the rest of my life.  

I guess I feel that even if they take out the nodule and it's benign that the possibility exists that there are cancerous cells in the other areas of my thyroid that they just didn't detect on the FNA.  Plus, since I have to deal with taking medicine for the rest of my life anyway because of the Hashi's, it might be better to have my thyroid totally out and be on medicine then have a thyroid that sometimes works close to normal and then other times is totally out of whack.  I feel trying to regulate medicine for that would be difficult.

So, I'm leaning toward the total thyroidectomy.  My surgery is scheduled for February 5th.  I know that I will be posting more questions etc as this time draws near.

Thanks all!

[utahmomma]

Calcification doesn't *mean* cancerous but can be a strong indicator of cancerous nodule.  Often calcifications are found with cancerous lesions (in thyroid, breast tissue, etc.)  but calcifications are also a part of the aging process.  However calcification with a solitary thyroid nodule is suspicious.  Here is an article that may help:  http://www3.interscience.wiley.com/cgi-bin/abstract/94516006/ABSTRACT?CRETRY=1&SRETRY=0

My family has a *huge* amount of thyroid cancer - four out of six of us (the other two had precancer).  I'm the only one of all of us *without* Hashi's.  Having an autoimmune thyroid condition doesn't lead to cancer (in fact it can actually lean towards benign nodules) but having Hashi's does NOT rule out cancer:  http://www.endocrineweb.com/fna.html

If cancer is found then you should have the entire thyroid removed.  Many thyroid cancers (such as my personal favorite: papillary carcinoma) can also have microcancers.  If there is cancer and RAI is indicated then you will need to have the entire thyroid removed.

If your thyroid does NOT contain cancer then there will be no need for RAI.  In fact two of my sisters with cancer only had TTs and have not had to have RAI after (their Tg and TSH levels are stable).

If, like the labs suggest, it is papillary carcinoma it is very treatable.  And you will be in very good company here on the forum.  :-)

Let us know if you decide on the surgery because we are here for you!!

[KJ5854]

Thanks for your input.  I appreciate it.  I'm hoping that others of you that read this will be able to give your insight, advice and opinion also.  All of this can be overwhelming.  

Regarding calcified, I was reading other posts and read on some that when a nodule is calcified there is a greater chance that it is cancerous.  Is that true?

Another question.  If I have a TT and they come back and say it's not cancer, do I still have to have the radioactive iodine?  

Help please!  Thank you.

[AR-10]

If your ENT doctor suggests removing the whole gland, then that is what you should do.

Calcified does not mean cancerous.
Carcinoma means cancerous.

I haven't read any studies on Hashimoto's long term effects and thyroid cancer. Don't know if there is a correlation or not.

Thyroid can affect blood sugar, but those symptoms may subside once your thyroid hormones are back under control.

the Hashimoto's antibodies will never go away, so you will always have to deal with them at some level, although conventional medicine says there is no way to treat the levels.

You will go through RAI (RadioActive Iodine) treatment because of the cancer, and you will be put on Synthroid or some type of thyroid hormone replacement for life. The RAI is less traumatic than the surgery.

Many of the girls here can give you better advice than me, because they have gone through it.