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Survivor2Be 07-04-2009 12:21 PM

Atypical thyroid cancer
I had a total thyroidectomy done in November. Went into surgery thinking I had a goiter that was being removed. Came out of surgery and found out that without a doubt I had cancer. My thyroid was described to me at that time as being very atypical. It had broke the capsule of the thyroid and spread to my lymph nodes. I had been told that it was very sticky and difficult to remove. They also found papillary cancer nodules in the right side and in a lymph node. The thyroid itself was over 9cm when they removed it. (Close to an adult human heart size)

I underwent my RAI treatment in December. Other than no meds and then the week of being alone it really was not a bad procedure at all. I had been reassured over and over again that thyroid cancer was the cancer to have if you had to have one. The doctors all did tell that I would likely have to have a 2nd RAI treatment because of the amount of cancer found. The first treatment scan showed incredible uptake and everyone became very optimistic.

I did notice a little bit of swelling in my left side of my neck (where the vast majority of the thyroid enlargement was found) and mentioned it to my endo. He told me that he thought it was just scarring and inflammation. After changing endos about 8 weeks ago after a multitude of problems with the first one I mentioned it to her. She was concerned and after reviewing my pathology reports even more concerned. She changed my meds and scheduled for my 6mos follow up scan using thyrogen this time around and a follow up visit with ultrasound to evaluate further pending my scan results. I was in her office 6 weeks later and much to my suprise and happiness my scan came back clean! I still had the swollen lymph node though so we did the ultrasound. She discovered a lesion in my thyroid bed and also the very enlarged lymph node. So the next step was to get a CT scan to evaluate it better. She prepared me at that time for possible surgical removal of the lymph node.

CT scan results were available monday. Monday afternoon I got a phone call saying I needed to see a surgeon. She said she thought there was something severe and invasive going on but that she was out of her medical scope. She had already called the surgeon and they would be calling me. They called before I even got off the phone with her and I had an appt to see the surgeon the next day.

After doing a full exam and reviewing the CT images himself he has informed me that I have a very aggressive cancer in my throat area. He said that it would be his impression that it is thyroid cancer because it has grown back into the thyroid bed. It has also expanded so far up the left side of my neck that I will need a neck resection and then probably chemo and/or radiation following the surgery. He said that it will be an incredibly dangerous surgery because of my previous surgery and the amount of trauma to the area. I am terrified to say to the least. The incision will begin behind my left ear and come across the front of my neck (joining with my current incision) and then up the right side because there is a stage 2 tonsillary node. He was going to meet with a cancer board because also another couple of surgeons within the teaching hospital to see if he needs to remove more on the right side just to be cautious. This surgeon is one of the best of the best... easily one of the top in the states if not country. I have no doubt that I am in the best hands... but knowing that I may wake up with no voice and a trach scares me to death. He did say that best case scenrio would be coming out of surgery on calcium and vit e because my parathyroids that were saved in the previous surgery have no choice but to be removed this time around. He said the cancer is so aggressive that he has no choice but to be just as so with the surgery and then the treatment afterwards. The chemo and/or radiation will have to be done instead of RAI because the cancer does not absorb iodine evidenced by my clean scan.

Has anyone else been through anything like this? My surgery is scheduled for the first week of August and I am loosing it more and more each day. I have been trying to keep the best attitude and think positive as much as I can. I must admit that as each day gets closer I start to get more and more nervous and am doubting everything.

javelina 07-04-2009 02:28 PM

Re: Atypical thyroid cancer
I just want to say how sorry I am that you are experiencing this. We are told over and over again how slow growing and "safe" thyroid cancer is and then I hear this story and, while I realize this is atypical, I also see that all cancers are very scary and should be dealt with promptly.

How long did it take for your doctors to recognize you had a thyroid problem and then procede to surgery? Do you feel that earlier recognition would have helped you any?

I have no experience with this so I can not offer anything other than my heartfelt best wishes and my hopes that you get through your surgery with the best possible outcome.

midwest1 07-04-2009 02:59 PM

Re: Atypical thyroid cancer
I have no experience with cancer, either. Just want to tell you that my most positive thoughts are being sent your way for a complete, uncomplicated recovery. I've often taken comfort in the well wishes of virtual cyber-strangers, so I hope the ones I'm sending you will help in at least some small way.
Be well ...

Reece 07-04-2009 07:36 PM

Re: Atypical thyroid cancer
I'm so sorry about your situation. But before you go for such an aggressive surgery, I would recommend you go to a cancer center, and get more opinions, this may be a great surgeon, but a surgeon will only see things from a surgical perspective.

If you read the post a few below, there is someone on this board named Archie Wilson, read all his posts. He had follicular thyroid cancer that spread to his bones. His tg markers kept going up, and now, he is on an experimental trial drug at the mayo clinic, and is doing great. His tumors aren't taking up iodine either.

Sloane Kettering, the mayo clinic, dana farber, md anderson, all have great doctors, and you should also look on the web for clinical trials. I'm not saying not to have the surgery, I'm just saying make sure that if there are other options, you know them---just in case you need both.

Best of success, and an easy surgery, and a speedy and full recovery to you....

Survivor2Be 07-05-2009 06:09 AM

Re: Atypical thyroid cancer
In September 08 I noticed that my thyroid was enlarged and went to my family doc. He did an ultrasound and labwork but said that everything was ok. I insisted that something was not right and got and appt with an endo. The endo immediately said it was cancer and sent me to a surgeon (I was to see him a couple of days later) but he said looking at the ultrasound he thought it was just a goiter and therefore considered my surgery non-emergent. I had my surgery mid-novemeber. By the time they got to my surgery it had close to doubled in size from Sept. I dont think I would be in any different position had I been in surgery earlier though.

Reece - My case and medical hx has been presented to a board of oncologists that agree surgery is about my only option at the moment. All of the oncologist are part of a very large teaching hospital. They are concerned because there was not a definitive pathology agreeement between multiple pathologist from the originial surgery.

My tg levels have been low since shortly after my RAI treatment and have remained low... my last one was at less than 0.5 just a couple of weeks ago. Other than the enlarged node that I noticed I have had no symptoms at all and no clinical data to support this cancer. My RAI repeat scan and all my antibody testing are fine. The only abnomality I have had is a extreme sensitivity to my medication. We have not been able to get my in a comfortable position. I was changed from generic to name brand synthyroid and put on 50mcg tablets hoping it was just me not tolerating the dyes and the generic formulation. My TSH went from 0.02 to 5.0 with the change and going from 200mcg to 175mcg daily. I have just started 50mcg Cytomel by itself to see if I can get rid of some of the side effects that I was experiencing from what we hoped to be the medication.

Reece 07-05-2009 07:25 AM

Re: Atypical thyroid cancer
Well it sounds like you are in great hands, you can also, since you aren't doing well on synthroid, you should also ask about thyrolar (a combo t3 t4) or Armour.

Hope all goes well....

famnd 07-05-2009 06:08 PM

Re: Atypical thyroid cancer
Your story really brings us to our knees especially when we complain about our less than critical symptoms. My heart goes out to you in multitudes!!!

About the Synthroid. Did you try the dye free Synthroid? I'm allergic etc to the dyes in other meds including Synthroid. Synthroid comes in a 50cg white dye free pill which I have to cut into 4 pieces. Also, I have to crush it & take it in applesauce.

famnd 07-05-2009 06:29 PM

Re: Atypical thyroid cancer
Pushed the wrong button. So here we go again.

My plan is always to prepare for the worst case scenario. I find it calming to prepare then to try to play catch up when I might feel the worst & not be able to manage doing much of anything.

My daughter had thyroid cancer. Both lobes were removed in two separate operations. All of her parathyroids were damaged & non functioning. This has been the worst of her ordeal so here are some proactive tips.

You might want to ask your Dr. what calcium supplement you will be using & try out some of them to find out which ones you can tolerate. You will also need Vit D & magnesium.

Taking lots of calcium probably will cause constipation so you need to find some way of dealing with that such as: increased fluid intake, walking a lot, fruits & vegetables etc.

You need to drink lots of fluid to prevent damage to the kidneys caused by the increased calcium intake. You may have to take a antihypertensive to help prevent damage to the kidneys from the calcium. My daughter already had a low b/p so this further decreased her b/p & made her tired.

You will probably need someone to help you with the housework or with kids if you have them until you get stable.

I found that writing in a journal really helps when going through painful ordeals, perhaps this will help you too. All you have to have is a cheap spiral notebook. Double lines gives you space to doodle if needed. Don't worry about correct English etc. The journal is for your eyes only.

Hopefully, you have some good forms of entertainment. I found that I couldn't even read when I was in so much pain but I would have loved to have had some silly DVD's to look at. I did find some old TV shows to watch at night when I couldn't sleep.

I found having some sort of schedule everyday helped to give some normalcy to my situation. Take care. Fam

TC08 07-06-2009 11:16 AM

Re: Atypical thyroid cancer
Hey Survivor2Be :wave::wave: Wow - yes, your story does take me to my knees. I began reading your post and was like "yea - yup - sounds like what I went through" (I had stage 3 papillary cancer - the surgeon described how large and "sticky" the cancer was..........thus, how difficult to remove............the cancer had spread to my lymph nodes.......had also wrapped around my right laryngeal nerve so the nerve had to be sacrificed leaving me with bi-lateral vocal cord paralysis, until the left nerve woke up - right side will never move again - doing much better now though after 14 months post surgery).

Then, your post continued. I just want to tell you I am sending you HUGE {{{{HUGS}}}}!!!!!!!!!! I do know what it's like to wake up from surgery with no voice, stridor (very hard to breathe), and the inability to swallow thin liquids. That part of the journey I can share with you :) Know we are all HERE FOR YOU!!!!!!!! I LOVE this board and have found incredible comfort / solace / and knowledge right here at my fingertips.

Come back often and let us know how you're doing. okay?? Take very good care, and I agree with famnd - to prepare for the worst - but always, always - HOPE for the best. I'll be checking the boards regularly to see how you're doing. I am coming up on my one year followup myself, so I have to say your story hit home with me - for sure. BLESSINGS :angel::angel::angel:

Survivor2Be 07-10-2009 02:16 PM

Re: Atypical thyroid cancer
As I sit here in tears I figured I would post an update to everyone on the events of the last couple of days.

Yesterday I met with an oncologist that is completely outside the hospital network that will be doing my surgery. He saw me as a favor to one of his friends. He basically said that he agrees with what the surgeon plans to do. He said looking at everything this is so aggressive that we have to be aggressive as well. He reassured me if he was in the same position he would allow the surgeon to do the surgery I currently am scheduled with and also would have what ever procedure he felt was needed. He said that the surgeon is clearly one of the best and specializes in throat and neck cancer surgeries so he feels he would not do anything unncessary but also would do what was needed to be done.

I got a phone call from the surgeon's office today to give me my official surgery date pending my PET scan results. I have the scan done next week and as long as there are no mets they will proceed with surgery. According to the oncologist yesterday if there are mets I am moved to the "incureable" list of cancers and would need to recieve extensive radiation in an effort to put it in remission but that it would likely come back again and get worse each time.

The surgeon has met with the "tumor board" at the teaching hospital that I will be having my surgery through. The decision was reached that I should have a bilateral neck dissection performed. All the lymph nodes should be removed as well as any other abnormal tissues found. I will have an incision ear to ear. The nurse said that almost all of these pt's come out of the procedure with temp trachs and possibly peg tubes. I am terrified at this point. All of these were listed as possible worse case scenerios last week before the meeting with the tumor board... and are now looking to be very real.

I am supposed to be getting married in 85 days. I have said over and over that I would not change my wedding day. I have not been able to find the motivation to complete my invitations or anything because I just have this overwhelming since of what if. I really do not want to have a trach and radiation marks in all my wedding day photos.

Archie343 08-24-2009 08:11 PM

Re: Atypical thyroid cancer
I just found this incredible thread.

Survivor--I hope you are recovering and doing well.

It sounds like your thyroid cancer is not the differentiated or well differentiated type. Most are, mine included. After hearing those terms for more than a year one of my doctors finally explained what differentiated means. If the metastatic thyroid tissue performs some of the normal functions of the thyroid gland, such as producing T4 and thyroglobulin, it is diffentiated or well differentiated.

The thyroglobulin tests tell the story.

My Tg kept rising even though nuclear scans were supposedly clear. Your Tg level suggests no metastatic tissue (less than 1) but scans show otherwise.

Did anyone say which thyroid cancer you have?

If you're not feeling up to replying that is no problem. Take your time and heal but let us know how you're doing when you're able. Our thoughts and prayers are with you.

Survivor2Be 08-27-2009 07:22 AM

Re: Atypical thyroid cancer
I am doing so-so since surgery. The surgery ended up being 11 hours long and then 2 hours of closing the incision afterwards. The left side of my neck is basically fake at this point. The surgeon had to take the sternocleidomastoid (SCM) muscle and both the internal and external jugular on the left. The nerves were stripped, etc. The right side was definately more modified. The surgeon said the cancer was so aggressive and destructive that he could not identify structures he normally could. According to him there is no way that my parathyroids remain intact because he cleaned the whole area out - however, pathology was unable to identify parathyroid tissues. I asked exactly how many lymphnodes were removed and his reply was simply "a lot." The cancer was extremely wide spread throughout the whole neck area. The good news is that when they sat me up to do trach placement after the surgery I talked to the Dr :) so I managed all of this without a trach. The surgeon said that does not happen very often at all. I had also been told that I would not be able to raise either arm over my head and I came out of surgery able to raise both of them. The left is most certainly more of a challenge but it will raise and the right feels almost as though nothin has been done. I still have a lot of numbness from the surgery and the swelling is a nightmare. Unfortunately, the swelling will always have the chance to come back just because of the significant upset to the lymphatic system.

My orginial pathology report from last year said papillary carcinoma with undifferentiated cells present. The surgeon said his fear when he was looking at the amount of cancer and the characterisitics was that it was going to come back anaplastic this time. However, the pathology report calls it "aggressive, severly undifferentiated carcinoma" and when the oncologist talked one on one with the pathologist and they both reviewed slides the pathologist thought that the cancer still leans towards a papillary carcinoma but it was extreme case.

I was in the hospital for 10 days following the surgery, however, that was primarily due the regulating calcium levels. I was on a calcium drip for almost a week before my body began to respond. I had 4 drains and around 60 staples.

I go today to have my radiation mask made. The current plan is for 33 external beam radiation treatments (about 6.5 weeks going 5 days a week)

I have my feeding tube placed next week. They said because of the primary location of the cancer and the radiation swallowing is going to become incredibly painful and the swelling will make it difficult to even take my medications at times. Hopefully radiation treatments will start within the next 10 days.

I am waiting on physical therapy at this point. My neck muscles are very tense and feel like braided rope at times. I do the stretches I was discharged with religiously and have decent range of motion in my neck although I have to work for it at times. I have to make a conscience effort to turn my head to talk to people instead of turning my torso. It is getting better though.

I could probably type out a couple of more pages about the surgery, recovery, and all the events not to mention all the things that I have learned but I think here is a good stopping point.

Thank you everyone for the support before surgery... and I am sure that I will be around the boards for a long time to come.

golfhat 08-27-2009 08:37 AM

Re: Atypical thyroid cancer
I just read your posts so far, and I am flabbergasted. My brother had papillary cancer in med school and had his thyroid removed. Everyone said it [U]was no big deal. [/U]He has done ok and it has been 18 years now. Of course he did the RAI. But it can be a VERY BIG your own story shows.

I too had a swollen lymph node last winter, and in ultrasounding they found my tumor. once my ENT knew about my brother he would not let me say NO to removal.

What is shocking is the size of your thyroid in Sept--already enlarged and the way it got bigger by November.

You should tell everyone you meet what happened. We may not know why we are here on Earth for sure-- but in your case, I think you are going to save other lives as well as your own with your incredible story.

I am sending positive thoughts your way. Please keep in touch!!

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