CSN Login
Members Online: 15

If you are new to thyroid cancer, read this.

Heathmiller
Posts: 4
Joined: Dec 2011

I found my nodule around 10/06/11 had first ultrasound 10/17/11 which lead to a fine needle aspiration on 11/11/11 which is the same day my doctor called with the cancer diagnosis. I tried to find the right people to help but no one would answer any questions. I found some real useful websites that I will post later. While researching, the thing I found the most is that the treatment isnt the same for everyone. My reg. Doctor sent me to a general surgeon who said, " we just do a total thyroidectomy and take the lymph nodes behi d the thyroid and then give radiation iodine therapy to everyone." This practice is very well disputed by top doctors around the world. I am happy to say that after much research I contacted MD Anderson in houston, tx. And was very pleased with the way i was treated. My doctor.. Dr. Gary Clayman was awesome. First off he talked to me and answered all of my questions. I know my case isnt the same as alot of people on here but Im 31 yoa and had a nodule that was 1.4 x 1.1 cm centered on my right thyroid gland. During my meet eith dr Clayman I asked if taking only half of my thyroid would be possible. The Dr. Stated that yes as long as the cancer hadnt went to any other part of my body. We ran several tests that all showed no metastases. The Dr. Stated that during the surgery if anything looked suspicious during he would test it then and if it came back positive for cancer we would move to total thyroid. I woke up still having half of my thyroid and I am praising God that it all went well. I had my surgery 12/08/11 and I feel great. It was an outpatient procedure small incision and only 1 1/2 hour surgery. Flew home a day later. Very little pain. If anyone has questions please ask I know what it was like when i was first diagnosed.

sunnyaz
Posts: 582
Joined: Oct 2010

Glad to hear you are doing well. I know that MD Anderson is a very good facility. Many of the members of this site are patients there. I wonder however if the hemi-thyroidectomy was a good call. It is my understanding that anytime there is cancer, whether it is only on half of the thyroid or on both sides, a total thyroidectomy is the best option. I know many people that have had metastasis even after a total thyroidectomy. I am one of them. My nodule was smaller than yours, only stage 1 and I had two recurrences to the lymph nodes. I am however, B-RAF positive. Did they test your tissue to find out if you are? Did they explain what that means? If your cancer was Papillary type, B-RAF makes this type of thyroid cancer much more aggressive and harder to treat with higher recurrence rates.

After my thyroidectomy my Endocrinologist said that I would not need an RAI treatment. I was delighted by this new because I didn't want to do it. This was a mistake because I had metastasis in only six months. It was after my second surgery they discovered I was positive for the B-RAF mutation gene. Five months later it was discovered that my ENT surgeon missed the targeted nodes in the second surgery and I had further metastasis. My third surgery was in December one year ago to do another right neck dissection to remove the original nodes and other nodes that were now affected. I had a second RAI treatment (first one after my second surgery) and I have been clear of cancer since February of this year. That is the good news. The bad news is that it can rear it's ugly head anytime and in any part of the body. This doesn't mean it happens to everyone but I encourage you to read some of the posts on this site and get a bit more familiar with your disease. Stay on top of follow up Ultrasounds and blood tests. Recurrence also depends greatly on what type of thyroid cancer you had. Papillary is the most common and supposedly the easiest to treat. Unfortunately not in all cases including mine.

Welcome to the boards. I hope you will read more and learn about this type of cancer. Many of us have been through a great deal and have gathered knowledge that you can't learn in textbooks, on web sites, or from a doctor.

Blessings
Julie-SunnyAZ

Heathmiller
Posts: 4
Joined: Dec 2011

pathology results from his surgery on 12/08/2011. Pathology results are revealed conventional papillary thyroid carcinoma located in the right lobe of thyroid with a single focus 1.4 cm in size, negative extrathyroidal extension, negative lymphovascular invasion, and resection margines were also negative. No lymph nodes present in sample. I informed the patient that we would stick with our original plan and he would send us the picture in 3 months' time of his incision. He would return to clinic in 6 months' time for a baseline ultrasound and serologic studies. I also informed him that we would like him to go to a lab near home and have T4, TSH drawn in about 6 weeks. All of his questions were answered to the best of my ability and stated satisfaction. Mr. Miller certainly understands that he may contact the clinic at any time in the interim if needed.

I trust the doctor and mostly God. I know its possible that it could come back but instead of it defining me I will define it. I have chosen to not let this control my life but I am smart enough to know that I need to continue my check ups. Thanks for the concern I really do appreciate it. I go for my checkup in six months and will let you know.

sunnyaz
Posts: 582
Joined: Oct 2010

Keep up the positive attitude. This will take you far in your recovery and your life. I hope you stay cancer free.

virginiawright's picture
virginiawright
Posts: 7
Joined: Mar 2012

Hi, I just now am finding your post... and I hope this finds you doing well, and the recovery from surgery is well on the way. I am a "21 year survivor of Papillary Carcinoma" of the Thyroid. Mine also was in the right lobe of the thyroid. I felt the same as you, take only what was necessary to remove the cancer. While there is always a possibility of cancer return, it has been 21 years this year, since my surgery and with a good Thyroid Globulin level in January 2012, and up until this year-- every year I had a lung x-ray, and ultrasound of the neck-- plus a Thyroid Globulin (Tumor Marker) test. But since I have survived for so long after my cancer surgery my doctor has decided not to do my chest x-rays or ultrasound on a yearly basis anymore. My TSH level will be monitored every six months, and I will continue to have a yearly Thyroid Globulin test. This short story I am telling you in hopes it will bring you words of encouragement. You are right, you must trust in your doctor and mostly in God. Many blessings for your future.

Best,
-Virginia

info [at] virginiawright [dot] com

vickihol
Posts: 12
Joined: Jun 2010

How did you discover the cancer had metastisized? I had total thyroidectomy in 2010, and was told as you were that the tumor was contained and very small. I have not had radiation, but still wonder if that is the right option. My doctor is an endochronologist, and I had an ultrasound a year later and was told it was fine. I still worry though. I guess I always will.

sunnyaz
Posts: 582
Joined: Oct 2010

I went to a routine check up. Endo did an ultrasound and found a few suspicious nodes. Biopsy revealed metastatic Papillary carcinoma. My Endo didn't do RAI after my TT. I should have done it even though my cancer was only stage one when found. I am B-RAF positive and if I had known about this when I was first diagnosed I would have insisted on the RAI. Might not have had to have two more surgeries and another round of MEGA dose RAI. I get checked every three months just to be on the safe side.

susan65
Posts: 2
Joined: Feb 2012

I decided to wait six weeks after my diagnosis,to maybe get surgery.i am high rist and scared i will die on the operating table. I am allergic to all dye,all antibiotics and anethesia.I have limited choices

virginiawright's picture
virginiawright
Posts: 7
Joined: Mar 2012

Susan, I am a "21 year" Thyroid Cancer Survivor. I was scared too, but the doctors take all your risks into consideration when doing your surgery. When they do your surgery prep, they even check how fast your blood clots, and annotate your blood type, so that they are prepared for any emergency if it comes up. Under anesthesia they monitor your oxygen level, blood pressure, pulse, etc., the surgeons who perform the surgery have done it many times in most cases and are prepared. Please have faith...wishing you the best of health in the future!

-Virginia

info [at] virginiawright [dot] com

susan65
Posts: 2
Joined: Feb 2012

I decided to wait six weeks after my diagnosis,to maybe get surgery.i am high rist and scared i will die on the operating table. I am allergic to all dye,all antibiotics and anethesia.I have limited choices

Rita12345
Posts: 5
Joined: Dec 2011

My story is somewhat similar to yours. My primary care physician found my goiter on August 26 and scheduled labs and an ultrasound and referred me to an endocrinologist. It took a while to get my appointment, but finally saw my doctor and scheduled my fna. The results came back suspicious for hurthle cell neoplasm. My doctor told me that she was 85% sure that it was cancer. She referred me to a surgeon at OHSU and I had my total thyroidectomy on December 7th. I had the choice to do a TT or partial… chose the TT which I’m glad I did because the right side tested positive for two microscopic spots of papillary cancer. The left side tumor was Hurthle cell carcinoma. I’m a little jealous that your doctors can tell you that the cancer hasn’t spread. I was told that it might take up to a year to know whether or not it has spread. I will do the RAI treatment sometime in the next 3-6 weeks. Unfortunately, hurthle cells don’t always take up the RAI… part of me doesn’t even want to bother with the RAI, but there isn’t any other treatment available so I’m going to do it.

The hardest part of all this is the unknown. The waiting and wondering can really play with your emotions. I imagine there will be a lot of ups and downs over the coming year.

Heathmiller
Posts: 4
Joined: Dec 2011

You know, while I was talking to the Dr. he said something I found real interesting. He said "if you were to take out your wifes thyroid or mine or just anyone on the street, more times than not you will find some micro carcinomas." He said that the difference between myself and one of those people is that mine got bigger before my body fixed it. This is not to say by any means that I think you made the wrong decision. Everyone has to make their own decision, but I think there is a large amount of Dr's that heir on the conservative side and give treatment based on that rather than the patient. If there is anyone with a similar story as mine whatever the outcome please share it.

Heathmiller
Posts: 4
Joined: Dec 2011

http://thyroid.com/roadmap

http://www.mdanderson.org ------ Dr Gary Clayman at the Houston, Tx. Hospital is awesome. I hardly had pain surgery 1 1/2 hr kept all parathyroids and most of all I felt really comfortable and he answered all my questions.

The below info came from this website.. http://www.endocrineweb.com/conditions/thyroid-cancer/papillary-cancer

Based on the these studies and the above natural history and epidemiology of papillary carcinoma, the following is a typical plan: Papillary carcinomas that are well circumscribed, isolated, and less than 1cm in a young patient (20-40) without a history of radiation exposure may be treated with hemithyroidectomy and isthmusthectomy. All others should probably be treated with total thyroidectomy and removal of any enlarged lymph nodes in the central or lateral neck areas. The surgical options are covered in greater detail (with drawings) on another "surgical options" page. Often other characteristics of the tumor that can be seen under the microscope will have an influence on whether the surgeon should take all the thyroid out--items such as vascular invasion, nerve invasion and capsule invasion.

JJ_2011's picture
JJ_2011
Posts: 14
Joined: Feb 2011

Hi Heather, I was diagnosed with a similar case and followed similar advice from my doctor. Prior to my surgery, I did as much research as I possibly could and found that there was supporting data for both outcomes. After I interviewed three well respected doctors here in Boston and received the same guidance from all three I decided to proceed with their advice. March 17th will be one year since my surgery...I have been closely monitoring my lymph nodes (partly because I am a bit neurotic) and I have changed my diet and exercise habits so that I can continue to increase the odds in my favor. Keep trusting God!

virginiawright's picture
virginiawright
Posts: 7
Joined: Mar 2012

Hi, So happy to hear you are a year-out and doing well. I'm a "21 Year" Thyroid Cancer Survivor. Just wanted you to know-- that there "are" long-time cancer survivors out there...

Best of health to you in 2012!

-Virginia

info [at] virginiawright [dot] com

sunnyaz
Posts: 582
Joined: Oct 2010

I am so happy to see a long term Thyroid Cancer Survivor on this site. Many thanks for your posts. Your posts are greatly appreciated by those of us who need to hear from survivors like yourself. May God continue to bless you!
Julie-SunnyAZ

iggymurphy
Posts: 34
Joined: Sep 2011

My nodule was 1.2 in size and located only in the right lobe. I am 34. They followed what your doctor referred to as standard procedure ....thank goodness. Although 3 ultrasounds found no spread..pathology revealed spread to all lymph nodes they took out. Had they not followed standard procedure I would be in for more surgery down the road.

lisaavellino
Posts: 16
Joined: Dec 2011

I was diagnosed with papillary a few months ago. I went to see an ENT for a issue I was having with my parotid gland and the nodule was found during the CT scan looking for salvary stones...

After second review of by FNA by UCSD Cancer center here are the results:
FINAL PATHOLOGIC DIAGNOSIS:
A: Thyroid, left superior, fine needle aspiration, outside slide review
-Atypical follicular lesion consistent with follicular variant of
papillary
carcinoma, see comment.
B: Thyroid, left inferior, fine needle aspiration, outside slide review
-Hypocellular specimen insufficient for diagnosis.
COMMENT: Specimen A: The cell block shows atypical follicular epithelial
cells forming predominantly follicular structures. These cells have
enlarged nuclei with nuclear overlap and clearing, intranuclear inclusions
and nuclear grooving. These features are consistent with a follicular
variant of papillary thyroid carcinoma.

I was originally scheduled for surgery on 12/29/11 and the ENT I was seeing was probably on the conservative side saying he would only take out left lobe unless at the time of surgery the nodule was malignent. What he told me was different from the first time I meet with him when he recommend a TT. I was not comfortable with his plan and got another opinion from the Director of Endocrine Surgery at UCSD who said he would recommend a TT. I am now scheduled for surgery with him on 2/1/12 for a TT.

During an ultrasound mapping it appears there might be a few lymphnodes that may need to be removed which will be determined at the time of surgery.

I realize everyone is different and I made the decison to have the TT regardless of what pathology said at the time of surgery. Knowing I can be treated with medicine for my thryoid I didn't want to risk the possiblity of a second surgery within 2 weeks of the first....I feel at peace with my decision and keeping a postive outlook that everything is going to be fine post surgery.

There is a lot of information out there on the web and forms, etc. I know many people have success and go on to live a healthy and happy life there are just not enough of them that are on these sites telling their stores.

Good luck and best wishes to all.
Lisa

3wonderfullboys
Posts: 1
Joined: Mar 2012

I too went to see my ENT and he found a mass on my left side and another very small one on the right. He said it was up to me to make the decisions but did give me some very good advice to think about. So I decided to do TT and it was a good thing I did cause my thyroid had cancer on both sides. Now waiting to do RAI on the 20th. Good Luck with all and God bless.

Aubury

JJ_2011's picture
JJ_2011
Posts: 14
Joined: Feb 2011

Hi Iggy, When you mentioned "pathology revealed spread"...I am assuming you are referring to some of the nodes they took out during your first surgery? I was a little confused on how the tumor would have show that the lymph nodes were affected. Thanks, JJ

iggymurphy
Posts: 34
Joined: Sep 2011

Yes, the lymph nodes that were removed were sent to pathology and all came back as positive for cancer. In addition, following my RAI, two additional lymph nodes that were not removed showed positive for cancer (visible in the post RAI scan).

I have two more months to wait and see if the RAI got everything left behind. Getting nervous! I don't check this site too often anymore (will probably get more active the closer I get to my 6 month mark). If you have questions, feel free to send me an email to my personal account. iggy_murphy@hotmail.com.

Erin

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2015 © Cancer Survivors Network