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Old 07-26-2006, 02:54 PM   #1
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Follicular Carcinoma with large nuclei and poorly differentiated

I had surgery April 20 with the removal of right side of T which had a 3 cm nodule that was positive for Follicular Carcinoma. It was vascular invasive and full thickness capsule invasive. (This nodule showed up suddenly and grew very fast.) Then removal of rest of T 5 days later.
Had RAI on June 13 and scan only showed T tissure in T area. The endo just wants to wait 6 months to a year for another whole body scan to see if RAI has removed all. He put me on 100 Synthroid and I'm doing fine on that. I never "went hypo" prior to RAI and still feel great with lots of energy.
The day before the second surgery my internist ordered brain MRI, chest, abdomen and pelvic ct w/wo contrast. The only really thing of interest that showed up was a "5mm noncalcified indeterminate smoothly marginated nodule in the superior segment of the right lower lobe lung." I had another CT scan last week and now there are 4 nodules on the right lung, too small to biopsey but very close to blood vessels.

Anyone else had anything similar to this?

My Internist is trying to get me into M.D. Anderson in Houston. All records were faxed to them yesterday. They take three days to review and then they should contact us.

Just a little worried and not willing to do nothing.

India

 
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Old 07-26-2006, 03:42 PM   #2
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Re: Follicular Carcinoma with large nuclei and poorly differentiated

I think it's great that you are taking control in terms of your care and health.

I remember after my RAI (for papillary), they told me it does take about 3 months for the rai dose to ablate everything.

Going to a top hospital is a great idea---if you need an additional opinion,I think Houston also has another thyroid cancer special hospital that I once saw on line when doing searches when I was diagnosed, but I can't remember the name.

Hopefully, those nodules will be ablated by the RAI. I know that Archie on this board has had follicular with a spread to his ribs, and I think he's going for a follow up scan soon.

Keep us posted....wishing you the best.

 
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Old 07-27-2006, 01:52 PM   #3
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Re: Follicular Carcinoma with large nuclei and poorly differentiated

Reece,
Thank you for the moral support.

One good thing about taking charge of your medical care is that you end up with a lot of information that you didn't have before you requested copies of all Dr. notes and test results and actual film. Going back and reading some of the material demonstrated how many errors there are that occur that we are unaware of.

I am allergic to codiene. However, my surgery notes state that I am allergic to Iodine, not codiene. Also, there is no mention of the Dr. feeling the nobule (3cm) and referring me for an ultrasound and RA uptake and thyroid scan and fna.

I recommened that everyone keep an active file with copies of all their test results and actual film from any scan they have.

Once again, thanks for your concern--it's appreciated!

India

 
Old 07-28-2006, 09:53 PM   #4
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Re: Follicular Carcinoma with large nuclei and poorly differentiated

Everything I've read suggests follicular grows and spreads very slowly. If yours truly showed up suddenly and grew rapidly it is most unusual but it sounds like your doctors are on top of things.

Good luck and keep us posted. (I have my first uptake scan set for early October.)

 
Old 07-28-2006, 11:02 PM   #5
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Re: Follicular Carcinoma with large nuclei and poorly differentiated

A woman I know had her TT at MD Anderson. She had a WONDERFUL experience, and a top notch surgeon. In fact, even though I live over a thousand miles away from Houston, I called and spoke with this lady's doctor's nurse. SHe was great, and I so much wanted to go there to have my surgery. But, my insurance says "forget it."

This lady who had the TT has an interesting story. Like me, she was dx'd with "fibromyalgia" and suffered for over 15 years b/c with that label, ALL symptoms of thyroid disease can be passed off as "Fibromyalgia." WIth every complaint she (and I) had, we heard: "Well, that's not unusual with fibromyalgia." Finally, she was dx'd with Hashi's, with a cold nodule (it's funny - we both were dx'd with the same thing at the same time - fibro 15 years before this, and then, within months of each other, with Hashi's and a cold nodule.

In her case, she persisted, and went to some top notch hospitals for an opinion - Mayo Clinic, Johns Hopkins - and received "benign" on the nodule. Finally, she went to MD Anderson. They found the cancer, removed her thryoid completely, and now, 3 years later, she is well and I am sicker.

You are VERY blessed to be able to go there. Keep us posted!

Ora

 
Old 07-29-2006, 10:46 AM   #6
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Re: Follicular Carcinoma with large nuclei and poorly differentiated

Hi, Archie:

Thank you for responding.

I'm glad you are getting you scan soon. However, I wish it were a lot sooner than October. I will worry about you til we get your results.

Like you, I thought one of the characteristis of Follicular Carcinoma was that it is slow growing. In two months or less, my T went from no detectable growth to 3cm. nodule.

The path report from surgery states The Follicular carcinoma is composed of micro and macro follicles and demonstrates full thickness capsule invasion. Additionally, multifocal nests of pleomorphic tumor cells demonstrating enlarged nuclei with prominent nucleoli are present. This poorly differentiated component is TTF-1 and thyroglobulin positive and calcitonin negative. The tumor was vascular invasive.

This doesn't Sound like your garden variety FC. My new research is a bit alarming since this is very agressive type with a very poor prognosis.

Good news! I have been accepted to M. D. Anderson. I have an appt. for August 31. Wish me luck.

India

 
Old 07-29-2006, 11:08 AM   #7
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Re: Follicular Carcinoma with large nuclei and poorly differentiated

Hi, Ora

Thank you for letting me know about your friend and yourself. It's amazing that the Mayo Clinic and Johns Hopkins didn't find the cancer. You are right, I am extremely blessed to be able to get into MD Anderson. It sounds like my insurance is going to pay. Right now I am scheduled for 31 August but I asked if I could be put on a cancellation list and maybe get in sooner.

What are YOU doing for yourself? Please don't leave it up to the medical commjunity. Keep working until you find someone willing to listen to you and do something so you aren't sick any more. Put yourself first and fight the fight, you're worth it!

India

 
Old 07-29-2006, 12:58 PM   #8
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Re: Follicular Carcinoma with large nuclei and poorly differentiated

Your experience makes me wish I had not postponed my scan. I had some required business travel in both August and September and the preparation for the scan (going hypo) and subsequent recovery would have overlapped the travel.

Our treatments were fairly different, though. You apparently had RAI without going hypo while I was forced to go deep hypo before they gave me mine. My radiation oncologist said statistics show a much better success rate for the RAI if it is given when TSH is 60-70 or higher. Mine got to 67 before he would give it to me. That's not to say your RAI would have killed your nodules any better than it did but it is a possibility. I don't know enough about the specifics of my follicular cells to compare it with the details you posted about yours. My doctors didn't mention anything unusual about the path reports.

I'm glad you've found a top-notch treatment center. Good luck and thanks for keeping us informed.

 
Old 07-29-2006, 01:30 PM   #9
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Re: Follicular Carcinoma with large nuclei and poorly differentiated

Oh, India! I am so sorry for what you are having to go through - sometimes I think reading about things adds to the stress. But then, not knowing is bad, too. Last year, before my hysterectomy, I had to have a heart cath b/c my EKG and stress test showed some abnormality. The heart cath was fine, and I had the hysterectomy. But I think having 3 surgeries in 3 months (heart cath, D&C and hysterectomy(, plus the stress test, aggravated my Hashi's to the point where my 25,600+ TPO antibodies are now joined by 703 TG antibodies!

So, I'm having a TT in 3 weeks, and can't wait. But, like you, I am frightened. My nodule has almost doubled in size since November, and my lymph nodes in neck and jaw are so sore and tender. I wish I had pushed for this 3 years ago. Yesterday, I found out that the "abnormality" on my EKG was a Q wave, which indicates a past heart attack. (I am 52, the same age my mom was when she had her first "minor" heart attack). I learned that b/c my new doctor ran another EKG in prep for the surgery, and the results were the same. But, unlike my last doc, she told me what the abnormality was! So, now it's back to the heart doc, and possibly more Stress tests and heart cath. I am really angry that I did NOT know about this "old infarct" last year, especially since I have been having so much chest pain, burning in the upper throat (which I figured was thyroid), and SOB.

So, not knowing is worse than knowing. At least, you can ACT on something you know. And yes, I am doing something for me, finally. The Endo's I saw never once suggested having my thryoid out, and one even told me "no way" when I asked. It's my Holistic MD who has been nudging me to consider it. I wish I could sue all 19+ docs who let me suffer for so long - would n't that be nice?

Anyway, you are in my prayers. By August 31st, I will be 10 days post op. I can't wait. And I pray that my path report on my cold nodule is not bad news. The surgeon is very concerned since my autoimmune attack has been going on for so long, completely unchecked and untreated (was not dx'd until 3 years ago). Thyroid cancer is slow growing, but I've given it almost 2 decades!

Blessings!

Ora

 
Old 07-29-2006, 04:19 PM   #10
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Cool Re: Follicular Carcinoma with large nuclei and poorly differentiated

Archie,

I did go hypo prior to my RAI, I just did not have many of the usual symptoms.
I was nauseous when I got hundry, had a constant headache, was fuzzy headed, but didn't feel the fatigue most people go through.

My TSH was over 100 2 weeks prior to getting the treatment. I went 8 weeks off the Synthroid. I am amazed that I did so well. I continued to work the whole time and as usual, no one can keep up with me. I have good natural energy that hasn't left me yet.

I still have issues with my throat and voice--hoarseness and can't seem to clear my throat. Sometimes (everyday) I lose my voice for periods of time. This was not caused by the surgery. They used the nerve monitor during my surgery and my voice was loud and strong for about 2 months.

Keep me informed about your situation and thank you for your concern.

Last edited by indias; 07-29-2006 at 04:20 PM.

 
Old 07-29-2006, 04:25 PM   #11
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Re: Follicular Carcinoma with large nuclei and poorly differentiated

Ora,

Go to all the dr.s you have seen and request copies of all your records. All blood work, x-rays, reports, pathology and even dr.s patient notes.

They have to give then to you because they are actually yours. YOU paid for them. You will probably find them enlightening. You may also find some errors in them that need to be corrected. Let me know when you have done this. Keep your own file. The dr.s will still have your info and files and so will you.

I'll be thinking of you and please let me know of your progress.

India

 
Old 07-29-2006, 05:28 PM   #12
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Re: Follicular Carcinoma with large nuclei and poorly differentiated

India,

I wish I had run in to you 10 years ago! I actually wised up 3 years ago, and started demanding copies of all my tests. It was then that I discovered that, everytime I asked to have my thyroid checked, all that was done was the TSH. And the entire time I was sick during my 1989 pregnancy, hospitalized twice b/c I was so sick, they NEVER checked my thryoid, despite the presence of a nodule that was discovered in 1986. That was completely forgotten about (even by me, I was so sick). I did finallywise up, and when I started looking into thngs, realized that they never really ruled out thyroid disease, even after diagnosing me with "Fibromyalgia" and sending me to the Cleveland Clinic's pain management unit for 3 weeks! I always thought Fibro was a dx after ruling out other things - but that turned out not to be the case.

Yes, I found tons of errors in my reports and labs. When I left the cleveland clinic worse than when I got there, I discovered by reading my doc's notes 10 years later, that the "reason" I left sicker than when I arrived was b/c I "tried too hard." Either I was not following the plan, or I was trying too hard! Anything but that THEY failed to rule out a major cause of ALL of my symptoms.

Yes, it was precisely because I started getting my labs and trusting only myself to know what I need, that I finally started to get some results. It is great advice for everyone!

I just got an email from an aquaintance several states away. She heard I was having a TT, and just wanted to tell me that 20 years ago, she had a nodule on her thyroid that was removed. She was deathly sick for about a year before they removed it - and within a DAY after her surgery, she felt better. Now, 20 years later, she is still fine, and still doing well on synthroid. (That's amazing in itself!). The point is, the nodule alone was what was making her so sick, and I've had a nodule that was virtually ignored for 17 years - until now.

Thank you so much for your concern. I will keep you posted as my surgery comes and goes. I am so sure I will feel better!

Blessings,

Theresa

 
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