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Thyroid Cancer....Now what?

Posts: 10
Joined: Oct 2010

I have recently been diagnosed with TC. I have been up and down with emotions. I am sure I will get through this, but it just sucks! I wondered about my treatment. I have to be with no thyroid hormone. Everyone says its a terrible time that they don't eat great foods. I see I can eat salt..no iodine...I can eat breads that I make, etc. I don't understand. Am I the only one with a cookbook? I have tried a couple of things and actually they are good food. My family even thinks they are good. I also got a juicer. That way I know I am eating what is good.

Please tell me a bit of what you went through with RAT. Share your journey here:)

Posts: 20
Joined: Oct 2010

Yes, you will get through this! And it does suck, but there is lots of support here!

The Low-iodine diet isn't NO iodine, it's low iodine. You can have non-iodized salt. There is a great cookbook that I used from the ThyCa website:
Sorry, I don't know how to make this a hyperlink, but you can copy and paste the above address into your browser. It's a great website and a lot of the recipes in there are wonderful! It got me through my LID period! It's not that the food was terrible, for me it was always feeling like I was hungry...or craving stuff I couldn't have. It also didn't help that I didn't have my family eat the same stuff as me. So I fixed them a regular dinner, and also fixed my LID stuff. It was tempting, but in that situation I was able to resist...I wanted my treatment to be effective, you know? I made my own bread, too. That was pretty good.

I didn't have to go without hormone for my treatment because I was able to get the Thyrogen shots, so I can't help you there. Sorry! I can tell you that my emotions go back and forth all the time. I'm only 2 months out from surgery, so I'm sure that will continue for a while.

Have you had surgery or will you have surgery? Keep us posted on your progress!

Posts: 10
Joined: Oct 2010

Hello. Thank you for answering some questions. I had my surgery the 22nd. I was taking hormone but I am off of it because my heart rate was 150. I am good though, I am tired but I push myself. No naps for me. It will take more that what I am doing. I keep busy, and refuse to just buckle. I was told that I may have weight gain but that isn't true so far. I have lost 13 pounds:)) Happy girl here!

I am healing nicely, and I got the diet book printed and bound into a book at Staples 2 weeks before my surgery. I am planning on having my mom make my bread for me. She is so good at cooking. She is going to help with some meals. I cook but this is all new to me.

Keep in touch. How are you feeling. I am 43 BTW.

Posts: 1
Joined: Nov 2010

Hello.... I am also new in this journey. I just found out last week that I have TC. I am 25 years old, married into the Army, with a two year old daughter, and am a Paralegal Studies college student via Everest Online.

I am going to see the ENT Surgeon on the 24th of this month. I am scared shitless. My emotions have been up and down as well. My husband is gone for training, so it's been even more difficult because I have no support network here. I know a few other wives up here, but nobody understands what I am going through. I feel so alone.

What does that cookbook actually do? I mean, does cooking like that improve our condition?

Posts: 507
Joined: Apr 2010

well I am active duty Navy and have gone through alot of this and i understnd how you might be feeling.

Check with the hospital faimly services there probably is a cancer support group if nothing else.

there may also be some other support groups in your area.

also go to www.thyca.org lots of good info there

i am sure there are lots of support groups.. took me about 4 months to find the ones i needed 1 second after i was told i had cancer.

talk to the ENT surgeon ask him/her what support groups there are
talk to the chaplin of the base dosnt matter your religion they will know support groups

you found us here we can be some of your support group

the LID cookbook is for after your thyroidecotmy when they start getting you ready for radiation scans (and prior to radiation treatment)

i found that even though i am the only thryoid cancer person in my cancer support group (well i know 2 others with thyroid cancer but they arnt in the group) the group helps and understands.

I dont want to scare you but i asume your already there... if you go through radiation treatment afterwords you will probably want someone to take care of your daughter for a few days so you can recover from the radiation treatment as well as help you around the house.

if your near bremerton naval or Joint Fort Lewis/Mccord/Madigan then you are within 1 hour of me and my wife, if not i am sure there is someone else somewere nearby who has delt with something similar.

good luck and keep us informed.

Posts: 12
Joined: Dec 2010

Thankfully my PA discovered that my thyroid looked enlarged. My GP totally missed it and I see him every 6 months. In fact, I was just in to see him two days before I saw the PA for a diabetes check-up. Long story short, ultrasound showed goiter and large nodule on one side and multi-nodular on the other. I had a TT on Nov. 17th and even though the preliminary was benign, pathology results showed papillary cancer on both sides. Due to my age I am stage 2. Trying to get into a new endocrinologist as mine after 1 visit is moving out of the area. It is recommended I do the I 131. I,too, had heard I won the lottery in cancer by having Thyroid Cancer. I don't feel very lucky... My voice is still deep and not very loud which my dogs seem to love! I have discovered that clapping gets the attention needed to call them in! lol. I hope the voice comes back soon. I am glad I found this board as well! Great to know I am not alone out there.

Posts: 582
Joined: Oct 2010

I am sorry to hear of your cancer. I too have Papillary Thyroid cancer and I don't believe the "lottery" concept. I have heard it termed the "Cadillac of all Cancers." I don't mean to be a downer but nobody with cancer is lucky, I hate Cadillac's and it really ticks me off that they say this.

Ask to have your tissue tested for the B-RAF mutation gene and talk to your new Endo about it if you are positive. Get the RAI as soon as possible. Get an Oncologist that specializes in Endocrinology if one is available to you. I know this may be a long shot, but they do exist. I have an Endocrinologist/Oncologist/Surgeon in Tucson with the University of Arizona Cancer Center. Not sure where you live but maybe some research and possibly slight travel will pay off. Be aggressive with this cancer as soon as possible. Get a handle on it, especially at stage two, you probably have metastasis. I was only stage 1 with my TT in November of 2009. My Endo opted not to do RAI. We thought this was the end of my battle. In May of 2010 I had metastasis and tested positive for the B-RAF mutation gene with metastasis to the Lymph nodes. Just completed my third surgery last Friday to remove Lymph nodes that my ENT surgeon missed on the second surgery in June 2010. ENT doc's do not know the nature of cancer like an Oncologist. Not that they are all bad, I just didn't win that lottery either.

I discovered my own cancer in September of 2009 and had to push my PCP to do the right testing to get answers to my symptoms. "It was all in my head you know?" Since I am in the Medical field doctors think you make up stuff just for attention or something. Blood tests were not enough, they showed nothing. I could palpate (feel) my node and insisted on a Sonogram and then a Biopsy. They were convinced I was one of the 90% that usually had no cancer.

Getting ready to do RAI again next month to destroy any possible microscopic cells that may be lurking about in my blood, lungs and headed toward my bones. I still need to be carefully watched for the rest of my life.

Please keep us posted on your progress. I truly wish the best for you. This may be the journey of your life or this may be close to the end of your journey with your cancer cure. There is one thing that is sure, you will be much smarter and stronger for the journey.

Posts: 12
Joined: Dec 2010

I know I am getting a bit frustrated in getting referred. Supposedly I will be getting a call on Monday with new endo. I am really looking forward to meeting her. I had my surgery at the James Cancer Hospital at OSU in Columbus, Ohio. I will definitely ask about the B-Raf mutation gene. I know I am now a part of a study for thyroid cancer there. I guess I just get frustrated with the "no hurry", you have a year to take the I 131. Even the thyroid surgeon was very optimistic and said this was a slow growing cancer and would most likely die from something else. I am hopeful to get the ball rolling and set up the treatment asap. Thanks for your words of wisdom and giving me the fortitude to push for the treatment quickly. Take care and wish you the best also!

Posts: 186
Joined: Oct 2010

Hi. I had my TT in september and pushed to get my RAI done as soon as they would allow. It was done in November, I may need a second one in March. My voice was pretty rough for a few months - its only now back to normal. I called it my rock and roll singer voice - not that I can carry a tune at all! I did a lot of smiling, nodding and listening for a few weeks. Once I went back to work it seemed to improve faster - strange because I'm a middle school teacher and have to use my voice all the time.

Good luck with treatments

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