I had a total thyroidectomy Oct 4th and they did not find a nodgule, but they said my entire gland was enlarged and fingering into the muscles of my neck. He thought everything would be ok it just appeared severly swollen and Hachimotos Thyroiditis. My pathology came back with multiple papillary and follicular cancer cells. I thought cancer usually showed up as a tumor. Has anyone had this experience? Does that mean it wont be as bad, or could have meant my entire thyroid was cancerous?
Also I have only been on Cytomel for almost 4 weeks and take my last dose Monday morning. I have been tired but functional. What should I excpect going off the Cytomel and going on this low iodine diet?
Sorry one more I am allergic to Iodine, has anyone gone through treatment or the scan with this problem as well?
One more, I am tired of people saying "Oh it's just thyroid cancer, that's a good cancer" I understand that to be true and I have a positive attitude about it, but it still sucks and I always feared the "C" word.
I would ask for a copy of the pathology report and have it told to you in great detail what happened. I have never heard of a good cancer. If I was you I still would be asking questions such as. Did you get all of the cancer, did any of it spread, what kind of cancer was it, are there any other test i can have to make sure there is nothing left. just to be on the safe side.
So sorry for your troubles. I had pappillary 2years ago, and just so you see the end of sorrow, I will tell you I feel just fine now. There is no "good cancer" but the good thing is that this one is curable, and not too many are. Your attitude about irradicating this from your body, and going on to a long and healthy life will get you through this hard time, and on to the happier ones. I do appreciate everything in my life much more now (not that I needed or appreciate cancer!)
You possibly had the thyroid cancer "intra" your thyroid, actually in the thyroid itself, or you could have had microcancers all over the thyroid that grew over time. Either way, the treatment is the same, you will want to have RAI to kill the thyroid tissue. Definitely ask your surgeon to explain the details of the cancer, but keep in mind, the treatment for pappillary is the same with or without spread.
Talk to the docs. at the nuclear place about the iodine allergy, I asked about it (I'm not allergic though), and they explained something to me, that I can't recall exactly, but something to do with what you're really allergic to is not exactly the iodine??? Make sure every doc. and assistant and tech. at the nuclear med. place knows about your allergy, tell each one individually, so no one forgets.
Some people, especially if you have cytomel (which I didn't) feel pretty good, up until around the RAI treatment. It depends on the person. I felt good until week 4 with no meds, and it took me a few months to feel normal after I got on meds and regulated. It's a long ride, but now that you've had the surgery, it's more than halfway over for you!
I'll be thinking of you...and wishing this over quickly and successfully!
I also hate the fact that I have cancer in my 40's. Although, I do feel thankful that it is curable. My mom and my best friend both have died in the last few years due to cancer, pancreatic and breast, so that does make you appreciate that it can be cured. I had my TT in Aug. I am allergic to iodine, too. So, I can tell you that it is not the same iodine that they use in cat scans, etc. It is not the contrast dye kind. I was worried that I wouldn't be able to have the tx, but I was fine, I did have excessive swellling, though, so you may want to be aware of that. My endo and a person on here; Christine, told me not to worry that it is the same iodine that they use in table salt, and if you can have table salt, you can have the tx. So, that is and was a big relief. I felt okay until about the last week before the RA-I, then I was very tired and achey all over. I wish you well, its not fun, but its doable, especially because you have no choice, so you try to choose to have a good attitude. My great family and wonderful, caring girlfriends got me through all of it, I am now on replacement meds, for 2 weeks and I am finally starting to feel decent again, these last 3 days...yea!!! I wish you well.
I am completley computer illiterate, so I hope I have replied the right way.
I just wanted to tell everyone thank you for your advice. It puts me at ease to know that this can be done with the allergy to Iodine. I see the endo on Wed. ando I will make sure that I ask all the important questions. Good luck to everyone my prayers are with you.
Yeah, the big C word didn't set well with me either. Docs were trying to be upbeat and say it's the best cancer to get. My cancer was multi focal which means it was spread throughout the gland. I also had one little nodule as well. It also spread through one node. Both the folks at Hopkins and my endo said the prognois was still the same. Youth and having the pap cancer is good. But, when people tell you it spreads you still freak out. The good news is the RAI will kill every little thyroid cell left. I know you will get nuked pretty well.
Just curious, how did you or your docs come to the conclusion something might be wrong?? Did you go in with complaints, etc.
I've was reading this thread and I noticed that we live in the same area. Just wondering if you have found a good endo that you like here. Also wondering if you liked your surgeon, in case I end up having to go down that road myself.
I have seen my endo only once and she seemed ok. Thought I might look around for a second opinion and am looking for someone good. Any recommendations?
Yes, yes, yes. My surgeon was Dr. Hunt with Huntsman Cancer and he is refered me to Dr. Abraham University of Utah (also connected with Huntsman). I highly recomend them. You can't get better then Huntsman and the U around here. Good luck to you and if you need anything let me know!
Well it was kind of weird how everything came to pass. I knew for 10 years that I had a Goiter for 10 years and also that I had hashimotos. Meds never took the Goiter down. About 3 years ago I noticed it was difficult to swallow. My doc told me to go get a scope, but he didn't think it was the goiter,. Well I never made the appt and just lived with it. The past night it got even more difficult to swallow and deep down I knew something was wrong. I also had ear pain and got a soar throught in August so bad I couldn't swallow. (still ignored it) Anyway, I took my mom into the Dr. appt at the end of the appointment he pointed his finger at me and said "when did you last get that goiter scaned" he told me I needed to make an appt with him and later called my home at 8:00 night telling me I was not on his insurance but felt I needed to go see Dr. Hunt at Huntsman. I had an Ultrasound and they said the entire thyroid was hard and swollen and wrapping around my wind pipe., So really I think Divine Intervention. Because I would probablly still be ignoring it.
Thanks for the info. I agree, you can't beat Huntsman and the U. Unfortunately my insurance doesn't cover those hospitals. IHC hospitals and docs are basically my choice. However, if I can't get the help I need I will definitely consider going out of network and paying the difference in cost. Thanks again for the info!
Sorry it took awhile to get back, I hope you are still looking at this post. Iam not sure if you need a good endo or endo for thyroid cancer. If you do not have thyroid cancer, Dana Clark (he started up Utah Diabities Center) takes some IHC insurances. He is a very good endo, however if you need thing like biopsys and such he has no mobility in one hand so he doesnt do the cancer side of things. I was also told the MaKady Hospital has good docs. I would just recomend you dont go to somewhere like Jordan Valley, Lake View or Davis. Please let me know if you need anything.
Thanks so much for looking into that. I just looked that Dr. up on my insurance and he is not covered either. I have heard great things about the doctors at the Utah Diabetes Center. I am definitely continuing in the search for a new doctor. I just got off the phone with mine and she blew off all of my concerns and said that I should be feeling great because my numbers are all within range.
Good luck, just go to an endocronologist not a family practice. The rage of normal is very brod and you need to find someone who is willing to keep you on the high end of normal and understands all the functions. I was once treated with cytomel and Levoxyl. Let me know and remember the dr. works for you.