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Thyroid Cancer and enlarged lymph nodes

sugar72822
Posts: 3
Joined: Nov 2003

Hi, I was diagnosed with Papillary Carcinoma in September 2000 and had my thyroid removed. The doctors found that the cancer had spread to about 5 lymph nodes in my neck. I had the initial radioactive iodine uptake and have had one scan since then. This past year I developed an enlarged lymph node right under my jaw. I am always aware of it and it worrys me. I had an ultrasound done at my last doctor's visit and he said "we'll keep an eye on it". Has anyone else had the cancer spread to the nodes and then found enlargement in other nodes? If so, what tests did your doctor perform? Thanks for your thoughts and good luck to all.

sjspeds
Posts: 21
Joined: Dec 2003

Hi Sugar72822, Has your doctor ran a blood test to detect the cancer or irregular thyroid levels? It seems that they could detect if it was the cancer coming back for sure just by doing that. Have you been sick with a virus or any other illness? I had 3 of my lymph nodes in my neck removed when they took out my thyroid this last Jan. I have Papillary Thyroid cancer also, and had the radioactive iodine tx. My scan came back clear, however there are no Guarantees that it will come back. I am worried and scared all the time that the cancer will come back. I feel stressed out all the time, and I can't help it, and I know that it just gives it an open Opportunity for it to come back! Stay strong, sjspeds

sharonmitchell
Posts: 5
Joined: May 2002

Hi:
I had papillary carcinoma in which I had my entire thyroid,parathyroids, lymph nodes on left and right side, chest cavitiy scraped during my initial surgery.I have some enlarged lymph nodes after sugery as well. You need to feel these and note any changes to your drs. Some of my nodes are enlarged or appear enlarged due to scar tissue. Other times my lymph nodes appear swollen and sore when I have a sore throat or cold. Just make sure you feel the size, location and texture of the lymph nodes. Note any changes and call your dr. During a more recent surgery, my drs found some dead cancer tumors on my spine. But due to the M131 radiation treatments, the cancer was dead. Make sure you also note if you notice if you tire more quickly, hands/feet are always cold, and frequent sore throats. These are a few important things that you may not even notice but over a few months could be a signal that something is going on in your body.Remember you are the best person to tell your drs what is going on with your body. Finally, try to worry about the thyroid cancer. I have been treating and following my stage 3 thyroid cancer since I was 21 yrs old. I am now 37 yrs old. I try not to worry about the cancer or the cancer taking over my life. I believe that God has a plan. I might not like His plan or understand His plan, but one day I will come to understand His plan. IN my thoughts and prayers.
Sharon

A_WAYNE
Posts: 1
Joined: Jul 2004

Hi,
I have papillary carcinoma and had a thyroidectomy 6 years ago. I never had a positive uptake so I never was prescribed a therapeutic dosage of RAI which was probably a mistake. Last year I had a reoccurance in my neck and just had the lump removed and it was cancer. I immediately had a 150mCi treatment. Now it has been a year and I had another lump which had no RAI uptake. PETs showed hot spots in this right neck and a one small spine spot area. I then just had a partial neck disection to remove 11 lymph nodes and 3/11 where positive. Now I am preparing for a high dosage of I131 (~800mCi) which I hope will work to kill the remaining stuff. Wish me luck!!!

A_Wayne

eva_8519
Posts: 4
Joined: May 2011

sharonmitchell,
thank you for posting this. my husband is 24 years old and has had 14 nods taken out as well as his thyroid. and to hear you are 37 and doing well gives me hope that he will around for our little one.
2nd treatment this week. hope this is the last one for a while.

LAF64's picture
LAF64
Posts: 20
Joined: Apr 2003

Get a second opinion - I hate to hear doctors say 'let's watch it' - watch it do what? Also, I had a PET scan that enabled the doctors to find activity in my lymph nodes. Ask your doctor about it.

sunnyaz
Posts: 582
Joined: Oct 2010

Hi Sugar72822,

I had my TT in November 2009. It was stage 1. In June of 2010 I had a right neck dissection to remove thirty-four nodes. Eleven were positive for cancer. I was tested for the B-RAF mutation gene and also positive for that. B-RAF makes Papillary cancer more aggressive, faster growing and harder to treat. In December I had another right neck dissection because the surgeon missed the two main nodes he went in to get and I had three more come back positive. This was done by a different surgeon who specializes in Endocrinology-Oncology.

Recently I noticed three lumps on my neck and I had my Thyroglobulin and Thyroglobulin Antibodies checked. The labs came back with undetectable levels and that was a good sign but not a true identifier of cancer metastasis. Then I went back to my Oncologist for another US and FNA on all three enlarged nodes. I was sure they were going to come back positive but came back negative. This was a first for me and I was shocked. I was getting myself prepared for another surgery. My Oncologist said that they were probably reactive to the most recent RAI treatment I had in early February.

In your case, I am not sure the "keep an eye on it" approach is a good idea. The least I would do is insist on a FNA to see if there is cancer in the node since your RAI was a while ago, this is probably not reactive to RAI. It could however be enlarged from a virus. The lymph system's job is to collect viruses, bacteria etc. to stop illness from invading the body. There have been a lot of viruses going around recently and they may simply be doing their intended job. In either case, with your history of cancer, I would try to get an FNA to be sure. I hope this helps in some way.

Blessings and prayers to you,
Julie-SunnyAZ

chase2585
Posts: 5
Joined: Apr 2011

In 2004, I had the left side of my thyroid removed for susicious nodules. Initially, they said no cancer but had to wait for lab results. Lab results came back with microscopic pap thyroid cancer. I was told it was so small, no further treatment but that they would keep sending me for ultrasounds on right side. In 2009, they decided to do a need biopsy on nodules that developed on the right side. Again, surgery to remove the rest of thyroid. I also had infected lymph nodes that were taken out, so this time was sent for radioactive pill. My surgean said it is very common that when lymph nodes are involved you might have to come back a few times and get more lymph nodes removed. Needless to say,I guess the radioactive pill did not work, cause 6 months later another surgery to remove more nodes.

It has been 8 months since last surgery, and again my ultrasound is showing a few more nodes. The largest is 8mm. My endo did not want it biopsied again. He said most likely it is cancerous and it would be a waste because he does not want me to have more surgery right now because they are so small to be operated on, they are not visible with the naked eye and complications could arise with trying to remove them unless they get larger.

Needless to say, I have been in tears all day today. Stupid I know. I am so tired of being cut; however, I am more worried about jut "watching them". I am scheduled for another ultrasound end of August to see if any growth. My blood work came back 0 levels, but my blood work is always good. Anyone else going through all these surgeries and complications with thyroid cancer. Please respond. Sorry this is so long but would love to hear input from others.

factfinder
Posts: 6
Joined: Aug 2011

Chase, I just read your history and am very sympathetic. It seems we are having all the same problems. I have had pap cancer since 2008 when I had my thyroidectomy. I went through the radiation pill and isolation and three months later I noticed a line of lumps on the right side of my neck. My endo held off for another three months and since they had gotten bigger thought it was time for my first dissection. After the dissection I went along for a while with no problems, but my blood tests always showed activity in my thyroid area. Finally I found three lumps starting on the left side and one on my treachea. Again, back to the surgeon for a further dissection and he took 48 lymph nodes which were in clusters on the neck muscle and a vein which he took. Now I have total numbness from my left ear to my shoulder and it has given me limited arm movement.

My next step is to see an oncologist on the 24th of August to see if there is anything that he can suggest to stop this madness. By the way there are 5 other members in my family which have been diagnosed with papillary thyroid cancer, but not to the degree that I have been through thankfully.

I wish you good luck with your next ultrasound, my endo wants another PET scan. Well I will wait and see what the onc suggests.

amyremy
Posts: 2
Joined: Aug 2011

I am having a similar situation. Mine started in 2007. Left dissection revealed pappalery cancer. Then rt disection to have radioactive iodone. 6 months later cancer found i my lymph nodes. 30 removed and 4 had cancer. Yesterday i went for my 6 month check up. The suspicious node they were watching showed no change, but now there is a new 5mm suspicious node. I have been crying while waiting for blood test results and do not know the next steps. SUCKS!!! I do not want another needle biopsy. That is terrible. There was a mention of a pet scan so I am going to push for that. Waiting while there may be more cancer in your neck is not a good way to live. I was feeling great until yesterday. Hope everything turns out for you.

amyremy
Posts: 2
Joined: Aug 2011

I am having a similar situation. Mine started in 2007. Left dissection revealed pappalery cancer. Then rt disection to have radioactive iodone. 6 months later cancer found i my lymph nodes. 30 removed and 4 had cancer. Yesterday i went for my 6 month check up. The suspicious node they were watching showed no change, but now there is a new 5mm suspicious node. I have been crying while waiting for blood test results and do not know the next steps. SUCKS!!! I do not want another needle biopsy. That is terrible. There was a mention of a pet scan so I am going to push for that. Waiting while there may be more cancer in your neck is not a good way to live. I was feeling great until yesterday. Hope everything turns out for you.

factfinder
Posts: 6
Joined: Aug 2011

It sounds as if we are experiencing the same thing. I have also had two dissections rt and lft and had the radioactive treatments. My last dissection was 6/6/11 and my last blood test showed activity again. I found another lump on the right side and actually I am feeling a lump in the back of my neck. I had 48 lumph nodes removed this last time and about 15-18 were papillary cancer. My endo and I have agreed that I should see a oncologist which I will be doing on the 24th. I will be interested in what he has to say, but in the meantime my endo has suggested no further treatment until she gets the oncologists report. She was going to do a PET scan but again I am sure she has suggested it to him.

So in essence it is hurry up and wait.

How many more dissections can any of us tolerate? Between the muscle impairment on my left side from my ear to shoulder and the pain I am experiencing I want results no more fooling around with theories.

Good luck to you and keep in touch if you need to talk.

nannybear
Posts: 1
Joined: Apr 2013

I am new at all this...but here is my story...about six months ago I noticed a enlarged lymphnode below my jaw line on the left side...I told my doc about it and she said , lets just watch it...I have since fired her from being my doc..long story.  Anyway, I told my Gastro doc about it and he ordered a Ct of the neck, they found a small cyst on my thyroid, I was sent to a Endocrinologist to have it further checked out..he they sent me for a ultrasound of the thyroid..it showed a 2 centimenter nodule along with the cyst, I am having a needle biopsy done on the 25th...I am nervous, espeically since I know I have  swollen lyphnode already, I wonder if  that means I have cancer and it has already spread..I cannot get answers yet from the docs, they just say, lets wait and see what the biopsy shows...but I am really scared

shandawn's picture
shandawn
Posts: 2
Joined: May 2013

I have recently been diagnosed with thyroid cancer and there were a few other tumours that eere not cancer around it witch means it is spreading, My question is if we did chemo now would that lesson our chances of future occurances??? because I dont want to constantly worry I know I will have to have them checked but would doing chemo lesson this??? I want to recommend chemo as my first as well as surgery and the radiation what do u think,do u think that would be something u would think of?? xo I have my app on the 31st so I dont know how bad mine is but in my mind I have 4 kids no matter what stage I wanna tackle this harsh for the first try.

amorriso
Posts: 186
Joined: Oct 2010

if the other tumours  are not not cancer then your treatment is fairly straightforward. Chemo does not work for thyroid cancer...our treatment is generally surgery to remove the thyroid and any affected lymph nodes, the radio iodine therapy.  In some cases external beam therapy may be needed.The success rate is very very good. 

You need to ask your doctor, or endocrinologist what they recommend. Surgery alone may be all you need.

 

good luck

amorriso
Posts: 186
Joined: Oct 2010

if the other tumours  are not not cancer then your treatment is fairly straightforward. Chemo does not work for thyroid cancer...our treatment is generally surgery to remove the thyroid and any affected lymph nodes, the radio iodine therapy.  In some cases external beam therapy may be needed.The success rate is very very good. 

You need to ask your doctor, or endocrinologist what they recommend. Surgery alone may be all you need.

 

good luck

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