# Papillary Carcinoma (Thyroid Cancer) - My Experience



## gavgit

First of all, thanks to all for sharing their thyroid experience. I used your thoughts and encouragement to defeat the disease, I believe. Now, it is my obligation to share my experience so that someone else in the similar situation can be encouraged. However, I am a foreigner and I may not be able to communicate as clear -so forgive my English.

I know this is a thyroid thread but I will give a brief overview of how it all started. At the end of December 2009, I went for a yearly health checkup. I also had a lump in my thyroid but it did not bother me at all. I was sent for a sonogram of my thyroid. I got a call from my nurse about a week later and was told that my fasting blood sugar reading was 261 and I was also told that I definitely had a mass in my thyroid. Therefore, I was sent to ENT for fine needle biopsy of my thyroid. After a week another blood sugar test was performed. I was confirmed a type 2 diabetic. I thought it was the end of the world for me because I love food. I was supposed to get a call from ENT about the results of the biopsy within a week but I did not get a call. In 2 weeks time, I followed up with my ENT and he tells me that my mass in thyroid is just a rupture. He did not even bother to tell me what the result of fine needle biopsy said. So, I asked him to fax me a copy of the results. He suggested that I take out 1/2 of my right thyroid node through surgery and I can wait for it if I want. My fine needle biopsy result was inconclusive. I was not convinced with my ENT, so I decided to do some research on how the cancerous thyroid mass would look and feel. I was suspicious so I decided to go for the second opinion. I put on some time to research to find the best possible ENT in town and set up an appointment with the ENT I found.

After checking my thyroid mass, my new ENT told me that this could be a good candidate for cancer. His advice was to take out the whole thyroid OR keep monitoring it regularly. I opted with monitoring it, however, I wanted to do a thorough biopsy immediately again but this time I wanted biopsy to be done by a pathologist himself not the ENT and my ENT agreed. So, when the sample was taken, both the pathalogist and the person who takes the sample and checks it under the microsope for the characteristics of the cell were present to make sure they get right samples. After 2 days of second biopsy, I get a call from my ENT with a horrible news of Pappillary Thyroid Cancer. I heard what I was scared of but I was mentally prepared to deal with it. Don't get me wrong I was scared, really scared. But at the same time, I was also aware of excellent prognosis rate of thyroid cancer. So, I was scheduled for full thyroidectomy within a week of diagnosis for March 10, 2010. I was glad to be in the best country in the world for the treatment and that was one of the positive I could think to motivate myself.

LESSON LEARNED (PERSONAL OPINION): I WOULD NEVER EVER GO TO A SPECIALIST THAT IS RECOMMENDED BY MY GENERAL PHYSICIAN. THEY TEND TO RECOMMEND TO SPECIALIST WITHIN THEIR ORGANIZATION. I WOULD RATTHER TELL MY GENERAL PHYSICAN THAT I WILL FIND THE SPECIALIST MYSELF AND WILL ASK YOU TO REFER ME TO THE SPECIALIST THAT I WANT TO SEE. ALSO IF POSSIBLE GET THE THYROID BIOPSY DONE BY PATHALOGIST NOT ENT. TAKING RIGHT SAMPLES IS IMPORTANT OTHERWISE IT COULD GO UNDIAGNOSED. SECOND OPINION IS IMPORTANT.

By the way, in less than 3 months time I lost 20 pounds. I came down from 184lbs to 164lbs due to strict diet guidelines and regular exercise. My diabetes was under control. I did not use any medication. I am 35 years old.

For preparation of surgery, I used this thread plus other web resources to accumulate as much information as I could. I was not scared of surgery and post surgey experience. I was prepared to deal with whatever came my way. But I was scared if it did spread to my lymph nodes or distant organs because my thyroid mass was a little bigger than a size of a golf ball. Surgery went fine as planned. As soon as I became conscious, my first question to my surgeon was if it has spread to lymph nodes but he did not think so. However, in a week I came to find out that the sample of 6 lymph nodes from surgery which were taken for test came out positive for cancer - all 6 of them. Now, I wished it did not spread to my distant organs particularly kidneys and lungs - skeleton and brain exposure is a possibility but unlikely at this stage. But I could only find that out after the full body scan, which is performed after about a week of taking RadioActive Iodine Pill. I started feeling slight burns around my kidney area and in my skeleton area. I was scared what if.... but it was more psychological I believed.

[Continued......... Check Response.........]


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## gavgit

[Continued.......]

NOTE: I DID NOT HAVE ANY POST SURGERY SIDE EFFECTS. MY VOICE WAS FINE. MY CALCIUM LEVEL WAS NORMAL. MY SURGEON HAD PUT ME ON CALCIUM SUPPLEMENT 2 DAYS PRIOR TO SURGERY. IMMEDIATELY, AFTER MY SURGERY, I STARTED TAKING SYNTHROID(generic). I WAS 100% SATISFIED FROM THE SURGEON I CHOSE.

Now my research had to go to a different level. By now I had known all I needed to know about thyroid function and implications. Now I had to find the best Endocrinologist for RAI and inform my surgeon to refer me to the Endocrinologist I wanted(I am being incharge of my own treatment) . Then I had to prepare for radioactive treatment which involved LOW IODINE DIET and NO SYNTHROID.
I met my Endocrinologist on March 31, 2010. He told me that although some of the studies say that pappillary thyroid cancer is 95% treatable, according to his ecperience he thinks it is 99% treatable, if it is caught relatively early. I have been remembering 99% treatable statment when I am scared and it calms me down. I can't tell one with 100% certainity that he/she won't die of traffic accident - I will have to say that I am 99% sure that one won't die of traffic accident. So, my conclusion is that my chances of dying from pappillary thyroid cancer is same as dying from traffic accident which is higly unlikely.

I stopped taking Synthroid the same day - March 31, 2010. On April 7 2010, I started low iodine diet. Blood test on April 14, 2010 showed a thyroid level of 55 (above 35[hypo] required for radioactive treatment). I took radioactive iodine pill on April 15, 2010. All this was easy for me. Low Iodined Diet could be tough for some people but for me it was a cake walk despite being diabetic. Because I was mentally prepared for whatever came my way. The only thing I wanted was NOT to have it spread to my distant organs. If anyone needs any info regarding low iodine diet, radioactive iodine treatement or anything related to my thyroid experience. I will be more than happy to answer your question. I have done tons of research on all this.

NOTE: I HAD NO POST RAI SIDE EFFECTS EXCECT SOME ACHES AND PAIN HERE AND THERE DUE TO NOT TAKING SYNTHROID. NO WEIGHT GAIN AT ALL.

My full body scan was done on April 22, 2010. On April 27, I started taking synthroid(prescription one from now on, there is a reason for that) and 14 day dose of LIOTHYRONINE to get me back to normal thyroid levels. I AM 100% SATISFIED WITH THE CHOICE OF MY ENDOCRINOLOGIST. He even gave me his email address if I had any question in the future. I had to go see my Endocrinologist to go over my scan results - indeed a big scary day for me. My Endocrinologist entered the room and shaked both of our hands and smiled. I asked if my cancer has spread to any distant organ. His response was absolutely NOT. This is when I realized how it feels to be relieved from pressure. I stood up from my chair, raised both my hands and released a long deep breath and said YES. However, the report said there were very light blemises in the upper chest area but according to my doctor that is nothing to worry about and he explained me why. Don't get me wrong though even if it is spread to lungs and kidneyes, it is still treatable. My endocrinologist concluded that my decision to go for a second opinion saved my life.

Now I have to check my thyroid level in 3 months and a possible scan in 6 months to make sure nothing is left. And may be a periodic monitoring.

It is unbelievable how this experience has changed my life. I enjoy every moment. Small obstacle doesn't bother me at all. I eat healthy and exercise regularly. It has increased my self confidence. I have become a little spiritual. I am nicer to people and could relate to people more than any time before. I may still have some cancer cells in my body particularly in my neck area, but it is being killed as I write and I hope to come out clean from it. I am a cancer survivor and I prey to God for each and every of your wellbeing. Just think about me - I have defeated cancer despite being diabetic and I am sure you can too. There is always a light at the end of the tunnel.

God bless you all and God bless America.

RAJ


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## GD Women

Thank you for sharing your story. You are a positive inspiration to others in the same situation or even not for you inspired me as well. Keep up your positive attitude and life will be sweeter. You have a great future ahead of you, how can you not with being such a great positive person and you sound like a pleasant one at that. Glad to have meant you and thanks again for your inspiring story, although I am sorry you had to go through it all.

Thoughts and prayers.


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## stacy80

Thank you for sharing your story! I am about to undergo my RAI for papillary thyroid carcinoma in a few days. It is great to read other's experiences and very comforting as well. My thoughts and prayers are with you as you continue your journey!


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## hillaryedrn

Thank you so much for sharing your experience!!


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## peterson

It is great to read a thyroid cancer story. I personally have not had cancer, but my 15 year old daughter was diagnosed this year with Papillary carcinoma. She had her TT in Feb (08), We are scheduled for a check up in 2 weeks. I am a little nervous about the visit, but have not expressed my thoughts to my daughter.


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## Andros

peterson said:


> It is great to read a thyroid cancer story. I personally have not had cancer, but my 15 year old daughter was diagnosed this year with Papillary carcinoma. She had her TT in Feb (08), We are scheduled for a check up in 2 weeks. I am a little nervous about the visit, but have not expressed my thoughts to my daughter.


Welcome to the board. Oh, my goodness!! How is your daughter feeling? You do know that her TSH needs to be suppressed at all times?

What thyroxine replacement is your daughter on?

Will you share her labs when they come in? We need the results and the ranges. Different labs use different ranges.


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