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Old 11-27-2001, 03:45 PM   #1
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Lymph Nodes

Hi everyone. I am new here, and I have found this place very interesting. A little about me....I am 26 and have a little boy that will be 3 soon. I am happily married, but still feel "blue" a lot of the time. I am always tired, which makes it extremely hard to chase my "wild wonder" of a toddler, and no one seems to understand how I feel. My husband tries to be supportive, but he doesn't really know how since he doesn't understand how I'm feeling.

My family doc found a "lump" on my thyroid during an office visit and sent me to an ENT. After asking many questions and examining me, the ENT decided he needed to do a FNA biopsy and a CAT scan. The biopsy was benign, but the CAT scan showed a colloid nodule (or something like that). I am still very new to all this. Anyway, he said he wanted to try to shrink the nodule, so started me on .075 of Synthroid and sent me to have my TSH tested. His plan of action is to gradually increase the Synthroid until my thyroid is completely supressed in order to see if the nodule will shrink. Right now, my TSH is 1.2 something and I am taking .125 of Synthroid.

A couple of weeks ago I noticed another knot in my neck, but not on my thyroid. I suspected it was just a lymph node, but went to the doc just to make sure. He examined it and said it was, indeed, a lymph node and that there was a very good chance it was associated with the nodule on my thyroid. He told me to come back in 2 weeks (that appt. is in 2 days)for him to re-check both knots and that he might want to consider an excisional biopsy. The thought of this scares me.

Has anyone else had problems with their lymph nodes enlarging? What are the chances of a nodule turning cancerous? I feel so silly when I go to the doctor with all these questions....I don't want to seem paranoid.

Any insight you may be able to give would be appreciated.

SnowAngel

 
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Old 11-28-2001, 12:30 AM   #2
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Re: Lymph Nodes

Hi SnowAngel,

I have no personal experience with the problems you have, but I know that thyroid cancer (IF you have it), is one of the most easily treated forms. They just remove the thyroid and give you the thyroid hormone the rest of your life. It can feel a little squeemish to have needles or surgery around one's neck, for sure!
That is normal! <IMG SRC="http://www.healthboards.com/ubb/smile.gif">

BUT, first things first. I have read that the biopsy is very easy, and nothing to be afraid of. I wanted to calm your fears a little. I am sure others that experienced those things will reply soon with their first-hand experience.

 
Old 11-28-2001, 02:03 PM   #3
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Re: Lymph Nodes

Hi Snowangel, and welcome. I had a nodule that was cancerous and had lymph nodes removed along with the nodule and my thyroid gland. Treefrog is right: while it is a very scary sounding situation, it is (in the scheme of things) relatively easy to treat and the return to good health is pretty quick. However, your situation sounds like you may not need surgery, unless you and your doctor decide you'll be more (physically and emotionally) comfortable with the nodule permanently removed.

I was wondering the exact wording of your FNA biopsy diagnosis. Did the doctors say it showed "no abnormal cells" or was it "indeterminate" or "inconclusive?" Since they gave you a benign diagnosis, I expect that there was enough fluid to review and they found no abnormal cells. I would not expect a sudden change to a diagnosis of cancer. But it is nice to hear that your doctor is taking your nodule seriously and wants to follow-up.

You mentioned that you had a CAT scan. Do you know if it was a thyroid iodine-uptake scan? (Did you drink anything or take a pill before the scan?) I ask because there is a distinct difference between a "colloid nodule" (meaning a benign cyst) and a "cold nodule" (meaning a nodule that is not made of excess thyroid tissue and therefore does not absorb iodine).

Are your lymph nodes sore in the swollen area? I find that mine (particularly in the neck and throat) will swell up and become tender when I am fighting a virus or fatigue. This usually subsides in a few weeks. It may be that your body is trying to heal itself right now. It may be worth checking to see if you have elevated thyroid antibodies ("Hashimoto's thyroiditis). This is a common finding that can lead to symptoms of hypothyroid and nodules.

You mentioned that your doctor is testing your TSH. Will he also test your Free T3, Free T4, and thyroid antibodies? These additional blood tests will give a well-rounded picture of your endocrine functions.

If you haven't had a chance yet, please read through our Information Archive thread for lots of useful information including symptoms checklists. And here are some other websites with really good information:
<A HREF="http://www.endocrineweb.com/thyroid.html" TARGET=_blank>http://www.endocrineweb.com/thyroid.html</A>
<A HREF="http://thyroid.about.com/mbody.htm" TARGET=_blank>http://thyroid.about.com/mbody.htm</A>
(Start at the Thyroid Basics/Thyroid 101 link, and look at the Nodules&Goiters and Hypothyroidism links).

I'd be happy to answer any questions you may have, so feel free to ask away. And let us know what your doctor says after your follow-up visit.

I'm glad to hear that you are in tune with your body and your symptoms. Taking care of things early is certain to return you to good health in no time.<p>[This message has been edited by ArtfulD (edited 11-28-2001).]

 
Old 11-28-2001, 02:27 PM   #4
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Re: Lymph Nodes

Thank you, TreeFrog and ArtfulD for your responses. This is the greatest place! I found it while trying to find some answers of my own on the internet. I still have a lot to read....you guys have posted a LOT of information here! I'm sure it will be most helpful.

Artful, I really can't answer any of your questions. All I know is that the Dr. that did the biopsy had a really hard time getting the needle to go into the nodule and once he got it in there he re-inserted the needle 4 times in order to draw enough fluid. I had to call my doctor's office to ask for the results after a fitful weekend because they didn't call me when they said they would, and all they told me was just that it was benign.

When I went to see the doc so that he could discuss the CAT scan with me, he basically just said the same thing and showed me the nodule on the scan. He did say that he wanted to keep a close eye on it because it came up without my knowing about it and it isn't painful at all. Then the lymph node popped up, and no, it isn't painful either....just big.

The only bloodwork I have had done (over and over) is the TSH level. I'm SO tired of being stuck! And I am having a hard time dealing with being SO tired all the time.

Like I said, I am still very new to this whole thing and don't really know what kind of questions to ask. All I know is that every time I go see him he mentions words like "operating room", "excisional biopsy", "cancer", and I don't really understand why if this thing on my neck is only a nodule. My thyroid is a little enlarged, too, and that concerned him also. I really do almost wish he would just go on and take thing out and get it over with so that I could stop wondering and worrying.

Anyway, I am so glad I found this place. I wish you both the best and thank you for your help!

SnowAngel

 
Old 11-28-2001, 02:35 PM   #5
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Re: Lymph Nodes

Oops, I forgot to answer your question Artful, about the CAT scan. They did inject a dye into me....that's all they told me it was. It was a CAT scan with contrast. On the scan that the doctor showed me, the right side of my thyroid (the "normal" side) was white, and the left side had a pretty good sized growth on it that was a greyish color. <p>[This message has been edited by SnowAngel (edited 11-30-2001).]

 
Old 11-29-2001, 12:47 PM   #6
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Re: Lymph Nodes

Hi SnowAngel. I just wrote you a really long response and this board ate it when I clicked submit. Sigh. I hope I remember everything.

Interesting that your ENT ordered a CAT scan instead of an Iodine Uptake Scan. I think Ear, Nose & Throat specialists are more focused on structure, as opposed to hormones (an Endocrinologist's approach). This may be why he keeps mentioning excisional biopsy to clarify your diagnosis. I don't know what your comfort level is, but I found that arming myself with information made me more comfortable with my doctors and my treatment, and eliminated some of the anxiety of the unknown. Additional tests can help you to mentally and emotionally prepare yourself.

Because your nodule is relatively solid with little fluid, an Iodine Uptake Scan would be an excellent next step to help determine if your nodule consists of excess thyroid tissue (benign) or if it is the early stages of an abnormal growth. It's a painless test and may eliminate some of the guessing as to whether surgery should be considered. I also suggest follow-up blood tests (particularly a test for thyroid antibodies) to help explain your symptoms.

If your doctor is uncomfortable with ordering additional studies, perhaps you can get a referral to an Endocrinologist. Don't be afraid of offending your doctors by seeking second opinions. Before my surgery, I researched Head & Neck surgeons and cancer specialists, interviewing three before I found one I was comfortable with. The process took a month, even though I was under a lot of pressure to have surgery immediately. (Surgeons and some other specialists can be a bit "take charge" at times. While comforting, it's also sometimes alarming because it emphasizes a sense of urgency.)

If necessary, you can also research facilities where you can get blood or saliva thyroid tests without a doctor's order. (Web searches using the terms "thyroid antibody test saliva" can help you locate a laboratory in your area.) Most doctors test the blood rather than saliva, but these saliva panels are purportedly quite accurate. Of course, it is always best to review/interpret your results with a caring doctor.

Ask your doctors and/or laboratories for copies of ALL of your blood and other test results. It's really helpful to organize your medical history so you can keep track of everything. A notebook with sections for test results, dates and dosages of medication changes, and the associated symptom changes is a great tool to refer to when having discussions with your doctors. (Sections documenting doctor's discussions and research you've found on the web are also helpful.) The return to good health is a long process, and it's so nice to have something to refer to as your treatment progresses.

I don't know what your diagnosis will be, but here's a brief summary of the worst case scenario that may help minimize anxiety about the unknown.

As you may already know, most types of thyroid cancer are typically slow to grow and slower to spread to other parts of the body. Unlike other forms of cancer, it does NOT require full body radiation or chemotherapy. Treatment typically consists of removal of the thyroid, any growths, and any abnormal lymph nodes. It is not a long hospital stay (for me it was overnight), and you typically feel like returning to normal activity within 1-2 weeks.

A few months after surgery, the doctor may order RAI (radioactive iodine) ablation. This painless procedure consists of drinking the same salty solution you take for an Uptake Scan, only with a higher level of radiation. The radiation destroys any remaining thyroid tissue in your body so the doctor can more effectively treat you with medication. (This way, all the thyroid hormone in your body is from medication, without interaction or interference from hormone-producing tissue.) It's usually an overnight hospital stay while you flush the radiation out of your system, drinking lots and lots of fluids.

You will need to be on thyroid medication for the rest of your life, and your doctor will monitor your blood levels every 2-3 months until you stabilize. Blood tests will most likely include T3, T4, TSH, and Calcium levels. Because surgery can be traumatic to the parathyroids (glands that help you process calcium), you may also be on calcium supplements post-surgery. The normalization process takes some time. Your focus post-surgery is to keep track of your symptoms so that your medication dose can be adjusted as needed.

Herbs and nutritional supplements can help you feel better, but right now your symptoms (though annoying) are actually a great service to you. Your symptoms are the best indication of what is going on in your body.

Please ask for your test results and do request an uptake scan. I think it could be very helpful to you and your doctors.

Best of health,
ArtfulD

 
Old 11-29-2001, 01:12 PM   #7
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Re: Lymph Nodes

Hi Artful! Thank you for your response....(although you had to type it twice)=) I really appreciate it! I am not a very assertive, take charge kind of person, and I've never had any kind of health problem that required me to be so inquisitive at doctor's visits. It's all very weird to me, and you hit it on the head when you said I didn't need to worry about offending him. I guess I figured that by asking a lot of questions I was questioning his ability as a doctor. My husband and my mother-in-law have both told me that I should go see an Endocrinologist, and I haven't asked for a referal because I was afraid of offending my doc, who really is very good, but he just doesn't offer a whole lot of information voluntarily. He is an ENT, but he also specializes in head and neck surgery.

Anyway, I re-scheduled my apt. that I was supposed to have today for tomorrow morning, and, according to what he says, I may ask for that referal. I also will ask for him to tell me exactly what the biopsy report said since they were so vague about it when they told me it was benign. I will let you know what happens!

It is so nice to be able to get advice from someone who has experienced the worse case scenario instead of from a bunch of people who just say "it's no big deal"! True, if you have to get cancer, Thyroid cancer is the friendliest kind to get, but it's a frightening prospect to face. Thank you for sharing your experience with me. I wish you all the best.

Thanks again!!
SnowAngel

 
Old 11-30-2001, 11:13 AM   #8
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Re: Lymph Nodes

Me again. Went to see my doc this morning. He said it felt like the lymph node that had come up was getting smaller, yea! The nodule on my thyroid is still the same. Same old song and dance....come back in 2 weeks for a re-check and to check the TSH level again. The good thing is, he didn't even mention the operating room this time! lol. He seemed to be encouraged by my progress and said that my TSH level still isn't low enough to know if the nodule is going to shrink.

The bad news is, I chickened out and didn't ask any of my questions. I guess I didn't want to bring up anything bad when he didn't even mention any of the things I've been concerned about. I'll just wait and see what happens next time. The nodule isn't growing, and apparently the lymph node is shrinking, so that's all good. Am I bad for not asking my questions?

I am so glad today is Friday! Here's to a restful weekend =), well, as restful it can be with a 2 year old running around!

SnowAngel

 
Old 11-30-2001, 11:31 AM   #9
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Re: Lymph Nodes

Hi SnowAngel. Glad to hear this doc visit was less stressful. Don't feel badly that you didn't ask the questions you planned. It's so easy to just be tired of it all and not want any confrontation.

I still think that seeing an Endocrinologist is a good idea, though the synthroid treatment you're receiving is probably what an Endo would recommend for these beginning stages. It's great that you have an ENT you can trust, in case surgery ever becomes an option you want to investigate further. But, in the meantime, give the synthroid time to (hopefully) shrink your nodule a bit.

When you feel more aggressive, you can ask for copies of your tests and inquire about a thyroid uptake scan, just to be safe. For now, it's great to hear you're in good spirits! Enjoy your weekend.

 
Old 11-30-2001, 02:56 PM   #10
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Re: Lymph Nodes

Thanks for the encouragement, ArtfulD. I'll update after my apt. the 14th. I wanted to ask you.....how long has it been since your surgery? Were you frightened at all when you were told you had Thyroid Cancer? I've read that it is very rare. Too bad all the other Thyroid problems aren't as rare as Thyroid cancer.

I also just want to say again how wonderful these message boards are. It's so nice to be able to read about other people's experiences and find advice like this. You just don't get this kind of information anywhere else.

Thanks again! Take care of yourself.

SnowAngel

 
Old 12-01-2001, 02:06 PM   #11
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Re: Lymph Nodes

Howdy SnowAngel. I can't seem to answer anything in a concise manner anymore...bear with me. <IMG SRC="http://www.healthboards.com/ubb/gabby.gif">

My surgery was just over a year ago: Nov 2, 2000.

My cancer story is kind of loaded with irony. I was working as a consultant and had no health insurance. My OB/Gyn noticed that I seemed to have grown an Adam's Apple since my last appointment and she recommended I see an Endocrinologist quickly. I usually notice changes to my body, so it was kind of surprising to me that I didn't see the protrusion.

Anyway, instead of buying health insurance first, I went to the Endo. Had the FNA biopsy but wasn't really worried about it. I negotiated a large raise at work that was approved one morning a couple of days after my biopsy, and about 4 hours after the good news, my Endo call to tell me about the abnormal cells. So I immediately had somewhere to spend all the money. Did you know you can put a hospital stay on a credit card? And that you can negotiate the rates if you have no insurance? I don't recommend it, but those 0% intro rates came in handy.

We ended up purchasing some health insurance while I interviewed surgeons. The insurance became effective the day before the surgery and, while I didn't know if it would cover anything that year, at least I would have future coverage.

I earn my living as a troubleshooter, so I kind of went into crisis mode and got really focussed. I had moments when I was scared, but mostly felt like my body had betrayed me. And I was worried about frightening my husband and my friends and family, so I tried to let them know very gently. I still don't really think of it as "cancer," because it's so different from any other form. And everyone gets so freaked out by the "C" word. But I found that it was less scary to me and to my family and friends if I spoke openly about it.

With all the support from folks on this board, and all the information that was available on the web, I felt really empowered and found that it wasn't just a brave front. I was also extremely lucky to have a good friend who went through this about six years ago, and she answered all my questions about what to expect and what I could do to heal myself quickly. I approached the whole thing with a sense of humor and the determination to get back to my regular self as soon as possible. I actually went out to dinner with family the night after surgery and was back at work after the weekend. (Surgery was on a Thursday.) My doctor was not happy with me, but I felt great.

The statistics say that thyroid cancer is extremely rare. It used to be that it was so slow growing that it wasn't diagnosed until people were in their 60s or 70s. But now, I'm starting to wonder about the prevalence of nodules. It seems that everyone I know -- mostly women in their 20s and 30s -- are having thyroid issues or are growing nodules.

I guess that means there are more people with whom we can share our stories. Hang in there. <IMG SRC="http://www.healthboards.com/ubb/biggrin.gif">

 
Old 12-18-2001, 10:15 AM   #12
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Re: Lymph Nodes

Hello all! I hope everyone is feeling well and gearing up for a great holiday!

I had another appointment with my doc Friday, and ArtfulD, you will be proud, I asked all my questions! I sat in there for about 20 minutes drilling him and I found out some very interesting things. I will try to make this short, I'm not very good at doing that, though!

First of all, my TSH is down to .86 now and he is trying to get it all the way down to 0. He is leaving me on .125 of Synthroid for now. From that point he wants to wait a couple of months to see if this nodule will start shrinking. He found another small lymph node that has come up, and he said that makes him a little nervous, so he wouldn't want to wait more than a couple of months if the nodule doesn't do some serious shrinking. It turns out that there is still a chance I could have cancer. I was shocked when he told me this, and I asked him if there was a chance that my biopsy was wrong and he said yes. FNA's aren't 100% accurate. I then asked him to read the biopsy report to me. It said, from what I can remember, that it was mostly colloid material, then a bunch of stuff I didn't understand, and then it said "consistent with a colloid nodule". It never said anything about "malignant" or "benign". Anyway, he said that if after a couple of months he doesn't notice a change, he will want to operate and remove the nodule and biopsy it to see if he needs to remove anything else while he's in there.

I know I will be fine, and I actually have found a little bit of energy in the past week (yeah!), but the uncertainty makes me nervous. I really don't like the idea of having my neck cut open. ArtfulD, didn't that make you just a little squeamish?

And once again, I can't say enough how interesting and informative this board is. Best wishes to you all!

SnowAngel

 
Old 12-18-2001, 01:33 PM   #13
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Re: Lymph Nodes

SnowAngel, you Rock! I'm so proud of you for sticking with your doc until your questions were answered. Sounds like he's following a good plan, trying to reduce your TSH down to slow/reverse the nodule growth. Just be aware that you may notice some hyperthyroid symptoms if he changes your dose to achieve this. (Sounds like you're holding steady for now though.)

In the worst case scenario, it's probably best to remove the nodule just to make sure you don't have anything lurking about that could be harmful later. But maybe that won't be necessary.

<B>WARNING FOR THE SQUEAMISH: Yucky bits described next.</B>

For me, the thought of the surgery was quite surreal. But I have to admit I had fun with it after the fact -- when the young interns came on rounds to visit the geriatric patient in the next bed, my dressing was in the process of being changed and I looked like a failed suicide lying there with a bloody neck. The young docs looked like their average age was about 22, and they were all pointing and gesturing with their fingers across their throats. I giggled and told them to come over for a closer look if they wanted, but no one did.

When I returned to work, I was also surprised how many of my co-workers wanted me to remove the bandages so they could see the incision. And others who asked, well, I could always say "I had my throat slit last week" if they saw the bandages sticking out of my turtleneck. I know, I'm a sick person to find this amusing, but you have to get your kicks where you can.

It's actually not terribly painful. The nerve endings are cut during the incision, so your neck is numb for several weeks while they repair themselves. The stitches tighten and itch just before they're removed, but once that's done, you're home free. And there's almost no blood. They won't even let you donate before the surgery because you lose less than a teaspoon during the whole procedure.

Glad to hear that things are going well for you. Enjoy the holidays.

 
Old 12-18-2001, 02:16 PM   #14
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Re: Lymph Nodes

LOL, ArtfulD. That actually sounds like something I would do. I could actually have a lot of fun with something like that here at work, I just don't want a big scar. I'm not going to worry about it for now, though. IF it happens, it's still a couple of months away. I'm at least glad I get to enjoy the holidays without worrying about it.

Hope you are well. Happy Holidays!

SnowAngel

 
Old 01-04-2002, 02:14 PM   #15
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Re: Lymph Nodes

Well, bad news from the Doc today. He decided that we have waited long enough and he wants to go ahead and take this thing out. He said the main thing that makes him nervous is that there is a small lump right beside the nodule we've been watching that has only been there for about a month. He said that if it IS cancer, that is where it would spread first, and he doesn't want to chance waiting any longer if that is the case.

Anyway, he will remove the left half of my thyroid, do a frozen section biopsy and, if it is cancer, he will remove the right side as well along with the lymph nodes on the left side of my neck. If it isn't cancer, he'll sew me up and I'll be home free!

I really am nervous about having my neck cut on, but I can share your fun, ArtfulD, and gross some people out with my "wound". He assures me, as you did, that it is relatively painless. I sure hope so!

I hope everyone had a wonderful New Year. I wish you all good health in the new year.

SnowAngel

 
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