Confusing Situation

lec2011

So I had melanoma last year and it was successfully removed last April. In July I began to rapidly lose weight and then I lost my voice. I had ultrasounds of my thyroid area due to having a "full" neck. The ultrasound showed nine enlarged nodules. Next they did an FNA that came back negative. We also did a thyroid function blood test that showed my thyroid was indeed functioning properly. We repeated the ultrasound six months later meanwhile I am in speech therapy which is not helping. So the hoarseness continued and we get the ultrasound back and now many enlarged lymph nodes add to the nodules that have stayed pretty much the same size. So we get a PET/CT and it lights up in my lymph nodes and my isthmus yet still no one knows what is going on. I have weight loss, hoarseness, swollen lymph nodes, and I wonder what is next. I am so confused and some doctors have said it looks like a thyroid issue while others say it looks like a lymph node situation. Has anyone ever had an experience like this? Thank you in advance.

alapah

Not exactly similar...
Is it nine enlarged nodules or lymph nodes? Did they do another FNA after the PET/CT? That seems critical. Are you confident that the docs doing the FNA and other tests know what to look for? Are you seeing an endocrinologist that specializes in thyroid issues?

Thyroid problems can cause hoarseness - that's actually how I found out I had thyroid problems and cancer. The recurrent laryngeal nerves, the nerves that operate the vocal cords, run next to or behind the thyroid (i can't recall exactly which). In my case there was a thyroid nodule between my thyroid gland and trachea which had grown large enough to involve the nerve on the right side. The nodule was large in my case - and easily seen on a CT scan. That nerve had to be sacrificed in my thyroid surgery so I only have one working vocal cord now. I am not suggesting that your case is cancer, just sharing what I've been through.

For what it's worth, my thyroid function labs always came back within range, even ones run just a week or so prior to my thyroid cancer diagnosis. As it turns out, they pathology revealed I had Hashimotos Thyroidosis, an autoimmune disease of the thyroid.

A few months after my thyroid cancer diagnosis, I was diagnosed with melanoma (successfully removed). I know how stressful this process is. My advice is to try to find the best docs you can given your insurance and financial situation. Unfortunately, patients have to be an advocate for themselves.
Best to you.
eileen

Baldy

alapah said:

Not exactly similar...
Is it nine enlarged nodules or lymph nodes? Did they do another FNA after the PET/CT? That seems critical. Are you confident that the docs doing the FNA and other tests know what to look for? Are you seeing an endocrinologist that specializes in thyroid issues?

Thyroid problems can cause hoarseness - that's actually how I found out I had thyroid problems and cancer. The recurrent laryngeal nerves, the nerves that operate the vocal cords, run next to or behind the thyroid (i can't recall exactly which). In my case there was a thyroid nodule between my thyroid gland and trachea which had grown large enough to involve the nerve on the right side. The nodule was large in my case - and easily seen on a CT scan. That nerve had to be sacrificed in my thyroid surgery so I only have one working vocal cord now. I am not suggesting that your case is cancer, just sharing what I've been through.

For what it's worth, my thyroid function labs always came back within range, even ones run just a week or so prior to my thyroid cancer diagnosis. As it turns out, they pathology revealed I had Hashimotos Thyroidosis, an autoimmune disease of the thyroid.

A few months after my thyroid cancer diagnosis, I was diagnosed with melanoma (successfully removed). I know how stressful this process is. My advice is to try to find the best docs you can given your insurance and financial situation. Unfortunately, patients have to be an advocate for themselves.
Best to you.
eileen

Thyroid function labs
lec,

I'm guessing I just had the same labs done and my endocrinologist sent me a copy of the results. Right at the bottom of the sheet it says ...

"Thyroglobulin levels, regardless of value, should not be interpreted as absolute evidence of the presence or absence of disease."

I've also read at the thyca web site that the labs are not as precise as we would all like. Here's the link ....

http://www.thyca.org/labtests.htm#tests

I agree with Eileen, if you haven't already, you should find an endocrinologist who sepcializes in thyroid problems, preferably thyroid cancer. If it turns out to be Hashimoto's, you can probably get your regular doctor to manage that. Many people have it.

Good Luck!
Alan

nasher

definatly question
the bigest problem with the "Normal" range is that they are set so that ~95% of the people will be in the normal range...

That being said you can be in the normal range and have a problem or outside of the normal range and be perfictly fine.

I am assumeing you have 9 enlarged lymph nodes and hopeing you respond so we can know more.

I have said so before and i will again get copies of your bloodwork and learn what the numbers mean

TSH "thyroid stimulating hormone" Normal 0.4 to 6.0 (some have revised to 0.3 to 3.0)
Total T4 Normal 4.5 to 12.5
Free T4 Normal 0.7 to 2.0
T3 normal 80 to 220

if your numbers are near the high end of normal you might be haveing hyperthyroid issues

some of the common symptoms of hyperthyroidism are
Palpitations
Heat intolerance
Nervousness
Insomnia
Breathlessness
Increased bowel movements
Light or absent menstrual periods
Fatigue
Fast heart rate
Trembling hands
Weight loss
Muscle weakness
Warm moist skin
Hair loss
Staring gaze
----

When you talk to your doctors who think it might be thyroid issues ask them why and what you should look for to help confirm there diagnosis

do the same to those who think its a lymph node situation.

also ask the question could it be both and could one cause the other.

----

I was in the normal range for my entire time prior to thyroid removal but trust me i had almost all the symptoms of hypothyroidism.

most of us with no thyroid left wish we could loose weight.

Craig

al9463

This is a thyroid forum, so
This is a thyroid forum, so most here are looking things from a thyroid perspective. I am not a doctor, but if you are having fairly serious issues but not getting answers from your doctor, then get a new doctor. Swollen lymph nodes can be one of 10,000 things, including just a cold. Hopefully you are getting an ultrasound of the thyroid and not just the lymph nodes. That is one of the best ways to find a potential thyroid cancer.

Then you say you has a fine needle biopsy. These can be very inconclusive as well. Its often very hard for these to hit their mark.

Again, press your doctor for some answers, and it may not be a thyroid, but if you don't get answers, find another doctor.

lec2011

Update...finally!
So I finally found out that a biopsy I had back in June 2010 came back with a follicular neoplasm. The endo. that I was seeing at the time must have somehow missed that. I am now being seen by a more attentive cancer specialist who sent all my previous information to pathology. My surgery is scheduled and now I am getting ready to see what is next. I suppose since the nodule that was a follicular neoplasm also lit up in my pet/ct that it most likely will be the real deal. Im nervous and anxious. I hear there is some gene linked with melanoma-thyroid cancer. I am so still so confused. Will they know more during surgery? Will they have to wait weeks after the surgery for pathology? It doesn't sound like they are going to take any of my lymph nodes that have been swollen over a year now. I am concerned due to all of the time that these important details were overlooked in the past. I mean I had a biopsy a year and a half ago and I am just now getting information. I am thankful for my new attentive doctor but still feeling worried and concerned.

sunnyaz

lec2011 said:

Update...finally!
So I finally found out that a biopsy I had back in June 2010 came back with a follicular neoplasm. The endo. that I was seeing at the time must have somehow missed that. I am now being seen by a more attentive cancer specialist who sent all my previous information to pathology. My surgery is scheduled and now I am getting ready to see what is next. I suppose since the nodule that was a follicular neoplasm also lit up in my pet/ct that it most likely will be the real deal. Im nervous and anxious. I hear there is some gene linked with melanoma-thyroid cancer. I am so still so confused. Will they know more during surgery? Will they have to wait weeks after the surgery for pathology? It doesn't sound like they are going to take any of my lymph nodes that have been swollen over a year now. I am concerned due to all of the time that these important details were overlooked in the past. I mean I had a biopsy a year and a half ago and I am just now getting information. I am thankful for my new attentive doctor but still feeling worried and concerned.

This is a case of neglect
There should have been more testing for your condition. I can't believe it took this long to find out you have Follicular Thyroid cancer. It's good that you have an Oncologist now. Get your Thyroid out along with any affected or suspicious nodes ASAP with a good dose of RAI as soon as possible after your surgery.

I am confused about the Melanoma you mentioned in your first post. Are you talking about Skin Melanoma? If so, and if I understand what my doctors have told me, Skin Melanoma usually comes after you have Thyroid cancer. My doctor's have me on the watch for lung, breast, skin and brain metastasis. If you already had skin melanoma this might mean that you are in advanced stages of Thyroid cancer. I don't mean to scare you but if it were me, I would get REAL proactive and insist on immediate treatment. Fire your Endocrinologist and get a better one.

You will be in my prayers.

Keep us posted and God bless you,
Julie-SunnyAZ

alapah

lec2011 said:

Update...finally!
So I finally found out that a biopsy I had back in June 2010 came back with a follicular neoplasm. The endo. that I was seeing at the time must have somehow missed that. I am now being seen by a more attentive cancer specialist who sent all my previous information to pathology. My surgery is scheduled and now I am getting ready to see what is next. I suppose since the nodule that was a follicular neoplasm also lit up in my pet/ct that it most likely will be the real deal. Im nervous and anxious. I hear there is some gene linked with melanoma-thyroid cancer. I am so still so confused. Will they know more during surgery? Will they have to wait weeks after the surgery for pathology? It doesn't sound like they are going to take any of my lymph nodes that have been swollen over a year now. I am concerned due to all of the time that these important details were overlooked in the past. I mean I had a biopsy a year and a half ago and I am just now getting information. I am thankful for my new attentive doctor but still feeling worried and concerned.

BRAF mutation
Not everyone who's had thyroid cancer needs to get a BRAF test but I would think that in your case it would be warranted. The BRAF mutation is a tumor/genetic mutation sometimes found in several cancers, two of which are thyroid cancer and melanoma. The test requires tumor tissue. Normally surgeons retain a tissue block but you should probably talk with your doctors about this test because it may be helpful for the surgeon to know up front that you would like the tissue tested. I believe it is a rather expensive test to have done (mine was done by a program doing trials on chemotherapy drugs targeting the BRAF mutation so I don't know what the cost of it was, unfortunately). You may have to press for it. (Wikipedia has a decent summary of BRAF)

Glad you were able to shop around and find a responsive doctor. Worth their weight in gold! Best to you and sending many positive vibes your way.
eileen

lec2011

alapah said:

BRAF mutation
Not everyone who's had thyroid cancer needs to get a BRAF test but I would think that in your case it would be warranted. The BRAF mutation is a tumor/genetic mutation sometimes found in several cancers, two of which are thyroid cancer and melanoma. The test requires tumor tissue. Normally surgeons retain a tissue block but you should probably talk with your doctors about this test because it may be helpful for the surgeon to know up front that you would like the tissue tested. I believe it is a rather expensive test to have done (mine was done by a program doing trials on chemotherapy drugs targeting the BRAF mutation so I don't know what the cost of it was, unfortunately). You may have to press for it. (Wikipedia has a decent summary of BRAF)

Glad you were able to shop around and find a responsive doctor. Worth their weight in gold! Best to you and sending many positive vibes your way.
eileen

So I called some genetic
So I called some genetic counselors that have been trying to get an appointment with me for ages. I have an appointment tomorrow and they will test me for BRAF. I got skin cancer at twenty years old and then two more time since then along with the thyroid cancer so they have taken an interest in me. I hope that the test comes back negative. They said it takes two weeks for results. If it does come back positive will I have a more aggressive form of thyroid cancer?

lec2011

lec2011 said:

So I called some genetic
So I called some genetic counselors that have been trying to get an appointment with me for ages. I have an appointment tomorrow and they will test me for BRAF. I got skin cancer at twenty years old and then two more time since then along with the thyroid cancer so they have taken an interest in me. I hope that the test comes back negative. They said it takes two weeks for results. If it does come back positive will I have a more aggressive form of thyroid cancer?

I asked if they could do
I asked if they could do this via blood work and they said yes. Weird because everywhere I read it says tissue.

alapah

lec2011 said:

I asked if they could do
I asked if they could do this via blood work and they said yes. Weird because everywhere I read it says tissue.

hm
I was always under the impression that tumor tissue was required. I recently learned there are also a number of BRAF mutations. The one most associated with thyca is V600E. That is the one I was tested for. Roche labs did mine using tumor tissue. No blood was taken. I have read that BRAC (a breast cancer linked mutation) can be determined through blood work. I think you may want to be sure that they also freeze a tissue block from your tumor in case it is needed down the road. I, of course, am no expert so perhaps it is doable through blood work. Let us know what you find out.

sunnyaz

alapah said:

hm
I was always under the impression that tumor tissue was required. I recently learned there are also a number of BRAF mutations. The one most associated with thyca is V600E. That is the one I was tested for. Roche labs did mine using tumor tissue. No blood was taken. I have read that BRAC (a breast cancer linked mutation) can be determined through blood work. I think you may want to be sure that they also freeze a tissue block from your tumor in case it is needed down the road. I, of course, am no expert so perhaps it is doable through blood work. Let us know what you find out.

B-RAF
I thought it was tissue also. I wasn't aware they could do it with blood, so that's great. I can get my daughter tested early. My tissue was tested after my second surgery and now I am having some skin issues that will have to be addressed. Bummer!
Blessings,
Julie-SunnyAZ

lec2011

sunnyaz said:

B-RAF
I thought it was tissue also. I wasn't aware they could do it with blood, so that's great. I can get my daughter tested early. My tissue was tested after my second surgery and now I am having some skin issues that will have to be addressed. Bummer!
Blessings,
Julie-SunnyAZ

So I did not go the
So I did not go the appointment because I was advised to do everything at the same place as my surgery will be done, however I am calling the lab were my melanoma was sent too in order to find out if there is still a chance of testing that tissue. Everything I read clearly states that you must test tissue not bloodwork. What kind of skin issues? I have had alot of experience with skin issues. This thyroid situation is what is new to me. I hope everything is okay. My mother works in healthcare so one of her doctors will be letting us know today the possible means of BRAF diagnosis and I will post here. Thank you all for your input!

sunnyaz

lec2011 said:

So I did not go the
So I did not go the appointment because I was advised to do everything at the same place as my surgery will be done, however I am calling the lab were my melanoma was sent too in order to find out if there is still a chance of testing that tissue. Everything I read clearly states that you must test tissue not bloodwork. What kind of skin issues? I have had alot of experience with skin issues. This thyroid situation is what is new to me. I hope everything is okay. My mother works in healthcare so one of her doctors will be letting us know today the possible means of BRAF diagnosis and I will post here. Thank you all for your input!

Skin Problems
I have spots that have grown and changed mostly on my arms and face. I know that I need to get in to see a Dermatologist very soon. One on my arm looks suspicious to me (I am also in health care) but my PCP says that it doesn't look suspicious to him. However, he is the same one I had to convince my thyroid was out of whack. It took me several months (10 to be exact) to force him to follow up. He did tell me he would give me a referral to whatever Dermatologist I wanted, but I have to do the research to find out who takes my insurance in the small town I live in. He isn't real helpful in that sense. There a few spots on my face. One is dry and flaky and it sort of comes and goes. I have noticed change every time it flakes and comes back. I guess it's time to be more proactive about it.

Hope you are hanging in there. Keeping you in my prayers.

Blessings,
Julie-SunnyAZ

lec2011

sunnyaz said:

Skin Problems
I have spots that have grown and changed mostly on my arms and face. I know that I need to get in to see a Dermatologist very soon. One on my arm looks suspicious to me (I am also in health care) but my PCP says that it doesn't look suspicious to him. However, he is the same one I had to convince my thyroid was out of whack. It took me several months (10 to be exact) to force him to follow up. He did tell me he would give me a referral to whatever Dermatologist I wanted, but I have to do the research to find out who takes my insurance in the small town I live in. He isn't real helpful in that sense. There a few spots on my face. One is dry and flaky and it sort of comes and goes. I have noticed change every time it flakes and comes back. I guess it's time to be more proactive about it.

Hope you are hanging in there. Keeping you in my prayers.

Blessings,
Julie-SunnyAZ

pt done
So my isthmus was removed and now i'm waiting for pathology. Not feeling great but looking forward to getting some results finally! I will post again as soon as I get Word!

sunnyaz

lec2011 said:

pt done
So my isthmus was removed and now i'm waiting for pathology. Not feeling great but looking forward to getting some results finally! I will post again as soon as I get Word!

I am confused
Did they remove your Thyroid or just your Isthmus? If just your Isthmus, why? That would be a very difficult surgery just to have to go back and take the entire Thyroid if pathology comes back malignant and I thought you already had a Follicular Neoplasm diagnosis. Did I misunderstand? I don't want to sound like an idiot but I am really confused and curious. I really hope you are feeling better soon.
Blessings,
Julie-SunnyAZ

lec2011

sunnyaz said:

I am confused
Did they remove your Thyroid or just your Isthmus? If just your Isthmus, why? That would be a very difficult surgery just to have to go back and take the entire Thyroid if pathology comes back malignant and I thought you already had a Follicular Neoplasm diagnosis. Did I misunderstand? I don't want to sound like an idiot but I am really confused and curious. I really hope you are feeling better soon.
Blessings,
Julie-SunnyAZ

me too Julie
I have no idea why they only did that i was confused because they were suppose to cut my isthmus and my left lobe where both nodes were found. Then I woke up with just my isthmus gone and my actual Dr. never came to see me, just his team. I def. was diagnosed with follicular neoplasm. Wish they would of taken it all cause i have a feeling i will be back in surgery!

sunnyaz

lec2011 said:

me too Julie
I have no idea why they only did that i was confused because they were suppose to cut my isthmus and my left lobe where both nodes were found. Then I woke up with just my isthmus gone and my actual Dr. never came to see me, just his team. I def. was diagnosed with follicular neoplasm. Wish they would of taken it all cause i have a feeling i will be back in surgery!

That Sucks!
I am not sure what they are thinking. I would demand to see the doctor and get the facts ASAP. Take someone with you to help advocate. Hopefully someone who knows a bit about medicine. Write down all of your questions and make sure you get answers that you understand in terms you understand.

I am praying for you lec.

Blessings,
Julie-SunnyAZ

lec2011

sunnyaz said:

That Sucks!
I am not sure what they are thinking. I would demand to see the doctor and get the facts ASAP. Take someone with you to help advocate. Hopefully someone who knows a bit about medicine. Write down all of your questions and make sure you get answers that you understand in terms you understand.

I am praying for you lec.

Blessings,
Julie-SunnyAZ

DX
I have papillary carcinoma with follicular variant confined to thyroid.
Good to finally know. my dr, wasnt there so they wouldnt even tell me what is next. I just know after having skin cancer 3 times and then this I need BRAF testing.