Newly Diagnosed, Need Help

I was diagnosed 6/9/08 with follicular adenocarcinoma.  I had my first surgery to remove the nodule on 5/29/08, was diagnosed and had my second surgery (total thyroidectomy) on 6/17/08.  I would just like to know if there is someone out there who has been through this?  I meet with my endocrinologist in a week.  I have been trying to do a lotof research on the internet about it and the treatment options, etc.  My husband has also been doing this too.  Please help, any info would be appreciated.  Thank you.

 

 

On 6/23/2008 lvkl4l wrote:

I was diagnosed 6/9/08 with follicular adenocarcinoma.  I had my first surgery to remove the nodule on 5/29/08, was diagnosed and had my second surgery (total thyroidectomy) on 6/17/08.  I would just like to know if there is someone out there who has been through this?  I meet with my endocrinologist in a week.  I have been trying to do a lotof research on the internet about it and the treatment options, etc.  My husband has also been doing this too.  Please help, any info would be appreciated.  Thank you.

 

All of us have been through it.  Mine was follicular but they didn't make me go through two surgeries.  Once they suspected cancer via two biopsies, I wasn't given a choice; total thyroidectomy.  What questions can we answer for you?  Have you seen the surgical pathology report?  That will help determine what your next step is and if you qualify for Thyrogen vs. hypo hell.  Let us know how we can help and we'll try to answer all of your questions.  This is a great site for info.

Thank you for the info.  My first surgery was to remove a nodule on the isthmus on the thyroid.  The biopsy I had on this nodule came back "inconclusive."  I then had the surgery to remove it.  They pathologist at the hospital couldn't determine if it was cancerous or not so they sent it to Cleveland.  I received a phone call 5 days after I met w/my ENT & had the stitches out that it was cancer.  He said that there was enough in the nodule to classify it as a cancer.  When I was in his office, he said that there were cells in the nodule that were "cancer like or cancer acting" and that's why they sent it off for further testing.  It's been 1 week today since my thyroidectomy.  I see the Endocrinologist tomorrow and my ENT also.  I guess I have a number of questions that I'm hoping my endo will answer tomorrow. The most pressing is if I will have to have radioactive iodine treatment and if there is anything I need to change in my life (diet, exercise, etc.)  I'm scared but the worst of it is over (I think ;) ).  I did get the results on Friday that the thyroid was benign so I'm assuming that it didn't spread, but what if some cells were dislodged and are floating around in me?  Should I be concerned that cancer could come back somewhere?  Do I need to totally change my diet & lifestyle?  So many more questions that I'm hoping will be answered tomorrow.

It was one year ago that I went through my surgery and RAI.  They found cancer in my thyroid as well.  Like you, I did a lot of research and read every message on this board.  This truly is the best site for discussion.  What I found from my personal experience is that the whole ordeal was fairly tame.  I only missed three days of work from the surgery.  I stayed in the hospital those three days (Wed-Fri), but was fine to go to work (with a scarf) on Monday.  Assuming your female, I also bought a collection of necklaces that could be adjusted to fall right over the scar once the bandages were removed.  Now the scar is so clean, you can't even notice it.

RAI was just going to the hospital and taking a pill.  Luckily, I only have a dog, that my son took for a few days.  Rented movies, and stayed inside. 

My vocals were weird for a month or so.  Never thought I would sing again, but probably within 4-6 months, I could hit some of the old notes again and am normal in that regard as well.

 Still feel "tightening" around my throat from time to time, but nothing too bothersome.  Diet and exercise should be ramped up.  It's tough with virtually no metabolism.  I will probably always be a little heavier now and I'm starting to accept that.

Good luck to you. 

 

On 6/24/2008 lvkl4l wrote:

Thank you for the info.  My first surgery was to remove a nodule on the isthmus on the thyroid.  The biopsy I had on this nodule came back "inconclusive."  I then had the surgery to remove it.  They pathologist at the hospital couldn't determine if it was cancerous or not so they sent it to Cleveland.  I received a phone call 5 days after I met w/my ENT & had the stitches out that it was cancer.  He said that there was enough in the nodule to classify it as a cancer.  When I was in his office, he said that there were cells in the nodule that were "cancer like or cancer acting" and that's why they sent it off for further testing.  It's been 1 week today since my thyroidectomy.  I see the Endocrinologist tomorrow and my ENT also.  I guess I have a number of questions that I'm hoping my endo will answer tomorrow. The most pressing is if I will have to have radioactive iodine treatment and if there is anything I need to change in my life (diet, exercise, etc.)  I'm scared but the worst of it is over (I think ;) ).  I did get the results on Friday that the thyroid was benign so I'm assuming that it didn't spread, but what if some cells were dislodged and are floating around in me?  Should I be concerned that cancer could come back somewhere?  Do I need to totally change my diet & lifestyle?  So many more questions that I'm hoping will be answered tomorrow.

To be safe, your endo will probably do RAI.  This procedure is nothing more than taking a pill and going into isolation for 72 hours.  First the RAI will kill any remaining thyroid tissue; very rarely will the surgeon get all of the tissue because they don't want to get too close to other necessary organs like vocal cords.  So the RAI kills off the remaining tissue.  It also will be absorbed throughout your body by any thyroid tissue that "escaped" and will kill it off.  You will then have a whole body scan to show your endo where the iodine was absorbed so they know exactly where the cells are. 

The Thyrogen I was speaking about is a wonderful advancement in thyca.  You sound like a perfect candidate for it.  Talk to your endo about it and do some research.  There is a lot of chatter about it on this message board.  These shots will allow you to bypass hypo hell and still be prepared for the RAI.  You will be put on a low iodine diet prior to the RAI but there is a cookbook available to you online.

Let us know if we can answer anything else!

Thank you for all the info.  I am hopefully going to opt for the thyrogen.  I do daycare out of my home and this will save me 2 days off of work.  The only thing that stinks about it is I have 2 children, 9 & 7.  I can't be around them for 2 days, the isolation, and then not w/in 6 feet of them for a week.  After talking with my endo today, I feel so much better.  Thank you again for the info.  I was well prepared in talking to him about it so nothing came as a big surprise.  Now it's just figuring out when to have this and what I can & can't eat.