New to the Forum and scared

hls94137

Hello! I just found this site and have so many questions and can not wait to browse through and see what others are saying/feeling etc.  I had my thyroid removed last Thursday and was told they did not remove any lymph nodes as they did not think they needed too.  Yesterday I missed a call from my Dr and new when I called back today something was not ok.  She explained to me that even though they did not do the "dissection" they did remove some lymph nodes that were attatched to my thyroid and they tested positive for cancer also.  She referred me to an endocrinologist who I am waiting to call me now......what questions do I need to ask? I am freaking out a little and trying to not "google" looking for answers~that is not always the best decision for me as I can really get myself worked up.  I started taking the thyroid replacement medication the day after surgery and thought I would not be seeing the endo for at least 4 weeks.......not sure now.  She did mention radioactive treatment, gosh I wish I had a recorder on my phone to listen to after I hang up to be able to verify the things I "think" I have been told.  Any suggestions on what to ask or what I will need to know and write down? I am 40 and the nodules were found by accident in December during a CT scan, all testing kept coming back normal until my ultrasound and that showed calcification in 1 of the nodules, however when biopsied all had cancer.  Thanks for taking the time to read this and any and all replies appreciated. 

alapah

Hi and welcome, though sorry you're needing to join us. 

I know it sounds terrible to hear of lymph node invovlement, which, in many cancers, means things are more serious. However, you should know that lymph node involvment in papillary thyroid cacner (i assume that is what you had) does not impact staging of the disease. It's not uncommon to find thyroid cancer in lymph nodes. Often surgery is required to deal with them because, although radioactive iodine (RAI) can be used to treat/kill thyroid cells it does not appear to be effective in penetrating lymph nodes to kill the thyroid cancer cells wtihin. Through surgery, they can be removed. In some cases, it may be possible to kill thyroid cacner cells within lymph nodes using a non-surgical process called alcohol ablation. It's not done everywhere. You can learn more about it on the Mayo Clinic's website, among others. If you have a number of cancerous lymph nodes, surgery is likely that path taken. I did not have lymph node invovlement so no neck dissection but others on this board have and can tell you what to expect.

Radioactive iodine treatment is a targeted treatment in the case of thyroid cancer because thyroid cells are the only ones in the body (well pretty much) that suck up iodine. This means that if you starve your body of iodine a bit before going throug the treatment (not all do this but you can go on a low iodine diet) then the cells are very receptive to absorbing the radioactive form when ingested (mine was in capsule forem). That iodine gets absorbed by the thyroid cells, which it then kills. Pretty amazing. 

I found they thyroid cancer survivor's association website very helpful - lots of info about treatments, how to understand labs, etc. The URL is www.thyca.org. Have a look there and note that the first item at the upper left is "Newly Diagnosed". If you click on that you'll go to a page with many links, one of which is "Questions You May Want to Ask". 

I know how you feel - so much to understand and deal with - and all the while you're probably a bit hypothyroid which doesn't help the overall mental state. If you have a trusted family member or friend who can accompany you to the doctor visits I highly recommend doing so. I brought along a friend to most visits and it was increidbily helpful. She remembered to ask things I forgot and she also remembered what was said - not all of which I recalled hearing at all, or maybe not the same way.

hope that helps a bit. best to you. 

eileen