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My Story......So far.....

crystalrking
Posts: 1
Joined: Jun 2003

I am 31 and was diagnosed with a goiter & nodules when I was about 25. I was told that it was not cancer, so when I lost my insurance I wasn't worried. I finally got insurance and was able to find a Dr. who agreed to remove the goiter. He did a needle aspiration to check for cancer, and said that the results were negative for cancer. That made me feel much easier about the surgery.

In November of 2002 the surgeon removed a 6cm sized growth off one side of my thyroid, & half of my thyroid. It was sent for biopsy and was found that I had Hurthle Cell Ca. I actually think the surgeon was just as hurt by the news as I was. In December 2002 I went back in to have the rest of my thyroid removed. We all expected that they would find the same type of cancer on the other side...but it wasn't. I had FOLLICULAR OF PAPILLARY. In January 2003 I had RAI treatment. I have recently gone back in for more blood work to see if the cancer is gone or not.

I was even told that of all the cancer this is one of the better ones to get because it is easily treated...but with all I have read Hurthle cell is not that easy to treat.

I think the worst part of all this is having a hard time getting a straight answer from dr's about what I could be in for. I have found that there isn't much information out there on thyroid cancer, and what is out there is very hard to understand.

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

Crystal - sorry to hear about what you are going through. I was diagnosed with thyroid cancer at 25 years old, had a complete thyroidectomy with no follow up. Last year at 38, it came back and I had RAI last year and lateral neck dissection this April. I found several things very helpful in dealing with my papillary thyca. I have never heard of Follicular OF Papillary.

1. Make a list of questions for your doctor and ask them to explain in layman terms. If they can't answer them, change doctors. I did that in 1994 and it made the difference this time around. My current doctor aggressively followed up when I discovered a small lump last year and now they believe they got everything with the surgery.

2. Try to find the most up-to-date hospital to work through for testing, etc. I live in NJ and went to a local hospital first time around. This time, I went to New York Hospital Cornell. They have machines for scanning that the other community hospitals don't have. AND they have funding. Which means they have new machines.

3. Several sources to try for information are the Thyroid Foundation, About.com under Thyroid, and this site. There is MUCH more information about thyroid cancer today than when I had mine in 1989. Read away and then ask your doctor to explain what you read. And if he/she can't - refer to suggestion #1.

Good luck to you - I would be happy to answer any questions if I can, but I would always recommend you use your doctor as the expert.

Take care and good luck,
Leslie

LMedlin
Posts: 21
Joined: May 2003

Crystal,

I am sorry to hear about the cancer. I was diagnosed in March of 2003 with thyroid cancer also. I have done alot of research and found several sites with answers. If you would like I will gladly send you the sites. I did also find that about.com has alot of information. I hope you are feeling well. I will be glad to help if you need anything even if it is just someone to talk to.. I know that it helps. This site has been a great help to me over the past few months.

sharonmitchell
Posts: 5
Joined: May 2002

My name is Sharon. I was first diagnoised almost thirteen years ago , back in 1989. I had my entire thyroid, parathryroids, lymphs nodes and chest cavitiy scraped. Followed by M131 radiation in Feb 90, May 96, June 99 and Jan 00. Followup with tearduct reconstructive surgery (July 01) due to the side effects of the radiation. My right tear duct collapsed. At this point, I have "maxed out " on internal radiation treatments (M131) In April 2002, I was tohave had 4 enlarged lymph nodes removed from my left side of my neck. However, once the surgeon was "inside" a radical neck dissection was necessary. Not only were the four lymph nodes were removed, but additional neck lymph nodes and all the lymph nodes under my shoulder muscle. Along with my lymph nodes, two lesions were discovered on my spine (C3-C4). At the beginning of this surgery I was to have the vertebrate removed with a bone hip replacement to replace the discs removed.Minutes before surgery, my endo contacted the neurosurgeon to change his mind. The endo wanted to remove the lymph nodes but wait on the vertebrate. But the neurosurgeon actually talked to me about what he thought, discussed what my endo thought and finally asked me mintues before going" under" about what I thought. I actually decided that the neuro would examine the vertebrate and decide what actions need to take place. In the end the good side of the surgery was after the head/neck surgeron finished, the neuro surgeon went in to begin the examinations. However, the lesions were dead due to the previous radiation treatments and the dead cells were so small, the surgeon decided another alternative. The neuro removed the dead lesions, drilled out 20% around the lesions and saved my vertebrate. YEH YEH If it wasn't for my drs and for the teaching hospital, my treatment might have been different. But the drs at Northwestern in Ill were aggressive in treating the thyroid cancer.I ask questions, read research books, inquire about new treatments, and got involved in the discussions about my treatments. Even though I had to endure days of physical theraphy to restore my shoulder muscle back to normal, I am feeling pretty good. I do not have to wear the neck brace. I still have C# and C4 in my spine. The scar is directly over the previous scar. I have returned to work almost two weeks after the surgery. I can finally turn my neck so I can drive.Basically life is good. Times can be rough.. but then there is the end of the rainbow. Attitude is everything.. and positive thinking can go along way.So for all thyroid cancer patients,, keep believing in tomorrow..and always try to smile everyday.

lisa66
Posts: 7
Joined: Jul 2003

The Mayo Clinic site and MD Anderson (Houston, TX)site are 2 good ones that I found helpful. They are suppose to be the best in the US. Read, print and compare what each web site has to say. Take it to your doctor and ask questions about all treatment possibilities
I had papillary CA and after 3 surgery's and 3 radiation treatments, I am very tired of hearing from medical personnel, "IT'S THE BEST KIND OF CANCER TO HAVE". No cancer is the best to have!

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