On 5/7/2008
PLS444 wrote:
I found out I had thyroid cancer three weeks ago yesterday. I had surgery a week ago yesterday and am already back at work feeling great. I had a total thyroidectomy last Tuesday. I got my stitches out on Monday and other than some itching at the scar, I feel pretty good. I always went to bed early and slept lots so my sleeping is still about 8-10 hours a night depending.
I am a single mom of a 2 1/2 year old and am the only parent involved. I have the most amazing friends and family who have helped take care of my son throughout the past 10 days and continue to help until the doctor says I can lift him up again. (sometime next week)
Ok, so I have been totally positive about everything. I felt nervous before the surgery, but who wouldn't? I haven't gotten scared or worried or anything as everyone says this is the cancer to have it you have to have cancer. (as if anyone wants it...) I am a giant chicken and faint easily from fear, but have been great throughout all of this. I got a PET scan a few days before my surgery and it showed that the cancer had not spread. I was very happy to hear that.
Now, today I went to see the surgeon to go over the pathology report and I am SCARED! He said they took out 4 of 7 of my lymph nodes and they had cancer. He said that my endo will work with me on the RAI and that will take care of anything else left. I know this might sound silly, but I am wondering why he didn't tell me he took out lymph nodes after the surgery? He did come in and talk to me and told me my thyroid was really big and the tumor was very solid so my incision is on the large side as it was all behind lots of "stuff" and they had to work hard to get the thyroid and tumor out. Why wouldn't he have told me that they also took lymph nodes out? I know it doesn't really matter what I was told that day and I am guessing they took them out just in case and sent to pathology to find out if they had cancer and then told me yes once they found out? Does any of that matter or am I obsessing because I am finally kinda scared?
Next, I am meeting tomorrow with my endo who I have not seen or spoken to since before my surgery. He said he was coming to the hospital to see me but never did. He is supposed to be a great endo here in Los Angeles, but I am not feeling that we are a team in this fight. I had spoken to him of my concerns before the surgery about going hypo for the weeks before the RAI and asked about other options. He was not receptive at all about that. I explained that I am work full time and am a single mom to a very young child and staying home for 2 weeks as well as finding someone to watch my son is not something I can do if I could possibly avoid it. He just kept saying that I hve to go totally hypo and that while it is not easy I have to do it. Then I read all over these boards about thyrogen injections and that sounds like a much better option. I also mentioned that to my surgeon today and he said that thyrogen is a great option and he also said there is a way to go on another thyroid med which is a low dosage so that I can function but will still prepare my levels for the RAI. I guess my question here is, am I wrong to want to ask my endo if he is in this with me? This is for the rest of my life and I can't be worried that my doctor is not hearing me or not interested, right?
Next, my fear today after reading the pathology report is, if they took out 4 of 7 lymph nodes and those had cancer, couldn't the other 3 also have cancer? Couldn't it be somewhere else hiding as well? I mean if nothing showed up on the PET scan but the 4 lymph nodes they took out had cancer, clearly, the PET scan missed it? Can the cancer come back after RAI or are we safe? How do we prevent it from coming back? If it does come back, it is more dangerous?
Sorry so many questions, I am finally scared and finally realized that I might still have cancer. Thank you- Paige
Hi Paige
I will try to help with the information I have gathered from going through this with my husband. I am sure others here can fill in the gaps too. I was wondering if your pathology report said that of the 7 nodes removed, 4 were positive for cancer. Could that be what it said? My husband's path report said of the 4 nodes removed, 2 were positive. (had cancer). I can tell you what his surgeon said about removing nodes. "If they look even remotely suspicious, I will remove them." If that was all your surgeon took, it is likely that was all he/she saw fit to take. I am not sure about this but I think it's common practice to remove nodes at the time of removing a confirmed cancer. I do know that my husband's surgeon told us all about that before she ever went in so it's too bad that you weren't properly informed about it.
I have heard 2 sides about RAI with med withdrawl vs. the injections. One said that for the first time out, med withdrawl is the gold standard and works best. Others have said that's basically hogwash and there's no need to torture people. I would talk with the endo and find out the specific reasons why you can't do the injections and then get a second opinion in the meantime. Most people have to wait to heal before doing RAI anyway so you might have time to do that. (I use the term 'time' loosely as I too am a mom and know how little of it there is!)
Your lymph nodes may have shown evidence of cancer but it doesn't mean it would be detected on a PET scan as they could be just cells and nothing large and visible. The RAI should help erradicate that and could put an end to any stray cells that may be lingering in your body.
From what I was told, the cancer cells will be ripe and ready for the radiated iodine and will hopefully absorb it all and they will die. If all of the thyroid cancer cells are killed with the first treatment, then the cancer won't come back. If some have somehow escaped the radiation, they may stay quiet with the thyroid suppression medication you will be on. If they do start to grow, however, you would likely need to do another RAI and/or surgery. From what I understand, a majority of people don't need a second RAI. I also read that more than 50% of thyroid cancer patients have spread to the lymph nodes but it isn't as ominous as with other cancers.
Good luck with your appointment and with getting answers. I think you would be wise to question your endo about being on the same page. There's nothing wrong with advocating for yourself.
Take care,
Karen