I had a total thyroidectomy done in November. Went into surgery thinking I had a goiter that was being removed. Came out of surgery and found out that without a doubt I had cancer. My thyroid was described to me at that time as being very atypical. It had broke the capsule of the thyroid and spread to my lymph nodes. I had been told that it was very sticky and difficult to remove. They also found papillary cancer nodules in the right side and in a lymph node. The thyroid itself was over 9cm when they removed it. (Close to an adult human heart size)
I underwent my RAI treatment in December. Other than no meds and then the week of being alone it really was not a bad procedure at all. I had been reassured over and over again that thyroid cancer was the cancer to have if you had to have one. The doctors all did tell that I would likely have to have a 2nd RAI treatment because of the amount of cancer found. The first treatment scan showed incredible uptake and everyone became very optimistic.
I did notice a little bit of swelling in my left side of my neck (where the vast majority of the thyroid enlargement was found) and mentioned it to my endo. He told me that he thought it was just scarring and inflammation. After changing endos about 8 weeks ago after a multitude of problems with the first one I mentioned it to her. She was concerned and after reviewing my pathology reports even more concerned. She changed my meds and scheduled for my 6mos follow up scan using thyrogen this time around and a follow up visit with ultrasound to evaluate further pending my scan results. I was in her office 6 weeks later and much to my suprise and happiness my scan came back clean! I still had the swollen lymph node though so we did the ultrasound. She discovered a lesion in my thyroid bed and also the very enlarged lymph node. So the next step was to get a CT scan to evaluate it better. She prepared me at that time for possible surgical removal of the lymph node.
CT scan results were available monday. Monday afternoon I got a phone call saying I needed to see a surgeon. She said she thought there was something severe and invasive going on but that she was out of her medical scope. She had already called the surgeon and they would be calling me. They called before I even got off the phone with her and I had an appt to see the surgeon the next day.
After doing a full exam and reviewing the CT images himself he has informed me that I have a very aggressive cancer in my throat area. He said that it would be his impression that it is thyroid cancer because it has grown back into the thyroid bed. It has also expanded so far up the left side of my neck that I will need a neck resection and then probably chemo and/or radiation following the surgery. He said that it will be an incredibly dangerous surgery because of my previous surgery and the amount of trauma to the area. I am terrified to say to the least. The incision will begin behind my left ear and come across the front of my neck (joining with my current incision) and then up the right side because there is a stage 2 tonsillary node. He was going to meet with a cancer board because also another couple of surgeons within the teaching hospital to see if he needs to remove more on the right side just to be cautious. This surgeon is one of the best of the best... easily one of the top in the states if not country. I have no doubt that I am in the best hands... but knowing that I may wake up with no voice and a trach scares me to death. He did say that best case scenrio would be coming out of surgery on calcium and vit e because my parathyroids that were saved in the previous surgery have no choice but to be removed this time around. He said the cancer is so aggressive that he has no choice but to be just as so with the surgery and then the treatment afterwards. The chemo and/or radiation will have to be done instead of RAI because the cancer does not absorb iodine evidenced by my clean scan.
Has anyone else been through anything like this? My surgery is scheduled for the first week of August and I am loosing it more and more each day. I have been trying to keep the best attitude and think positive as much as I can. I must admit that as each day gets closer I start to get more and more nervous and am doubting everything.