I'm so sorry. I COMPLETELY understand where you are coming from. And for what it's worth, "normally" there is a "tiny" chance. And that's what I was told repeatedly as well.
I don't have any advice as I'm coming up on my one year scan myself. It's a daunting thing, cancer. I was heartened, I guess by their statements in the beginning about it not happening to me. Couldn't. I was told it was such a small chance... But like you, I was one of the 2-5% who got to have a TT... Oh yeah, the double smile club for me! YIPPEE!
I do have a question though as you raise a few red flags for me. I had my TT in Sept. '07. Exact same cancer. Pap with foll variant. But mine was small, 1.2 cm and encapsulated. I had 98 mCi dose RAI. I have not had a 6 month scan as my doc didn't recommend it for me. Did you have one? Or did you find the metastis on the 1 year scan?
Several here have had a reoccurance and can tell you all about the next steps. I look to utahmomma for her vast amount of knowledge a constantly! She has had a reoccurance too, and several of her relatives, siblings and children have had thyroid cancer as well.
I do know that this is not devistating news. It can be treated. The good news is there is a GREAT BIG chance that you will come through this FINE! I'll be keeping you in my thoughts. Please, please keep us informed. You've found the right place for support and information.
I'm so sorry as well to hear that you're once again, having to deal with this annoying problem. HUGS!
I, too have turned to Utahmom and she has been most helpful in describing processes and why through her experiences.
I am scheduled to see a surgeon the end of this month as I need surgery done as well due to atypical cells on a 2.2 cm cold nodule on a multinodular goiter with the rest being hot nodules. Needless to say, I'm quite scared and worried so, I am glad to have found this forum to come to for personal touch support and info as docs are not the greatest by far at doing that for us. Half of us, even in consultation with endos don't know what any of it means as our docs don't explain much of anything to us. I, too have been told the numbers of 10% or less and yet, thus far, I've been finding that those numbers are seemingly not as low as they once believed. Perhaps, it's due to more and more people getting tested and finding more of it, therefore those "tiny numbers" are from a larger pool now. However, as others in here have also experienced, it seems that they are still walking and talking and doing very well, even with reoccurances!!! *smile* It seems like there is life outside of thyroid problems.
As Utahmom has said to me.....if we could have the same chances in Vegas, we'd be doing great financially! *smile*
Hang in there Jewel. Perhaps, this will be your very last needed treatment! Sending prayers!
By the way, odd say that you can't keep getting the low points! Sooner or later, your odds have to hit the higher side for the good!!! *smile*
I too had Me too had papillary with follicular variant. Mine was also in a lymph node. How did they determine your cancer reoccurred in your lymphatic system? Was it just with your uptake scan? Is your TSH and Tg levels both low or have they been climbing (even slightly)?
Keep your chin up, sometimes it just takes a few dose's to get the job done. You probably had a spec left that still needed a good zap. You'll do fine.
Jewel. I know how you feel. If you do archive search on my posts, you'll see I actually told two of my docs to stop giving me Stats when they talk to me cause stats are just that .. they are % made up by SOMEBODY and I got to the pt. that they didn't know what to say and how to handle it so to make THEMSELVES feel better they relied on the only way they knew how as they don't deal with thy cancer every day .. and that was the # game. After we got that little issue straight, I have a great relationship with them.
So Tiny tiny tiny ... do you mind if I quote part of your post and make it a post to see what others have gone thru with this, too?
May I ask how large your original nodule/tumor was? Mine was 2.5cm -- papillary with follicular variants but it had not spread anywhere. It was multifocal, though - I had 4cm in the other lobe.
Had yours spread originally? I had 135 of I131 -- Will go for my scan in January but I'm already nervous!
Wow, thank you so much for all the support. As for your questions, my original nodules were 1cm and smaller. My doctor had suggested 100 of I-131 but after my own research found that the follicular variant has a better outcome after 15 years if an original higher dose is taken, I took a 15 pg. study into my doctor and got him to up it 150. Which is why I was surprised to hear that he decided to stick with this higher dose the second go around. Last year after my first dose of I-131 all of my medical file was moved to an endocrinologist and other then filling my levoxyl RX I didn't see much of her. She scheduled my 1 year scan, a week after the scan I called to get the results and the nurse told me that my entire file had been given back to the oncologist since she (my endo) did not treat cancer. Hell of a way to find out, I had to wait 2 weeks for an appointment to see the scan. The metastasis is mostly in the throat (It lit up like a ghost of my thyroid, same shape and everything, creepy.) there were only a few tiny spots outside the throat although I couldn't see them and he didn't tell me where. I got scared because he told me between the high doses and my scan doses this is could be my last shot, you cant go over 450 of I-131 or the likely hood of developing leukemia outweighs the benefits. So if this dose doesn't work I may be looking at traditional chemo. I hate that you have to wait a year to see the results it eats at the back of my mind all day. I took your advice and emailed UtahMom and you are all right she is wonderfull and a fellow Utahn to boot.
I have no idea of what you are going through but, please know you are in my prayers.
Everyone is sooo right... UtahMom is a fab person!
Just want to lend my support to you. As you can see we're here for you.
Please know there is no need to feel "Sorry for the rant." We love rants! In fact, we're all experts at it, at least I know I am.
So let 'er rip!
I will keep you in my thoughts and prayers, Jewel. My stepdad had lymphoma and did real good with the treatments, but now he has some other kind of weird cancer. He's on some sort of experimental drug and seems to be doing OK. Actually, compared to me and this Graves' mess, he's like a healthy teenager.
I knew a woman who fought cancer in every part of her body for about twenty years until she succumbed to it. I also know a few who had it come back a few times and finally they are cancer free. I guess today is all any of us really have, but I hope and pray you do great...one day at a time. I love you, even though I don't know you.
Hey I dont know completly what your going through because Graves disease has yet to go away. i did the radioactive iodine and it didnt work and taing 26 pills a day is not working either. I have a 3 year old and want something done with this since I am getting very unhopeful with this. I went to an upper cervical chiropractor today and he realigned my atlas. We did xrays yesterday and found a good bit wrong with my spine and my atlas. The reason the medicane has not been working because the part of my spine that controls my thyroid is out of place so the medicane would try to slow it down but my body couldnt get the signal from my nerves that it is regulating so it just keeps woring faster and faster. I would suggest looking into a chiropractor. Not just a regular chiropractor make sure they are an upper cervical chiropractor. Have them do some xrays and your plates are probably out of place hence why it came back. Today he released 75% of the pressure off my brain stem from my atlas being out of place. He also told me that most meidcane just covers up the symptoms for awhile. So try to fond an upper cervical chiropractor close by and let me know if you go. I can say after today the swelling in my eye and throat from my goiter has already gone down some. Good Luck and remember surgery and medications arent always the answer if at all possible have one of these specialtist chiropractors xray you before surgery or any major medications. He told me If I would have come in as a child I never would have got graves disease to begin with because I have been out of alignment for awhile.
I typed a long reply and have no idea where it went. :-(
I'm so sorry for all you are going through! Yeah, being the 1% of the 1% just isn't any fun anymore!!!
They have me on Boniva for my oesteoprosis - ask about it. Also make sure that you take Vitamin D with your calcium (but spaced 4 hours away from your thyroid meds).
I had a recurrence two years after my last surgery - and am working on another one now too. My recurrence was in my thyroid bed, a bit in the liver, and a small area in my head. We'll see what this one entails. :-/
Keep hope! My youngest sister had three major recurrences - her last all through her abdomen and a *large* amount in her breasts. She had three doses of RAI and, now nearly 3 1/2 years later, is 100% clean! She also managed to have a beautiful, healthy, strong, smart little girl 2 1/2 years ago. There is a cure and there is hope. Hang in there!
papillary carcinoma '02 (2nd surgery '04)
recurrence and RAI '06 and probably '08
three sisters with papillary carcinoma
another sister with precancer, daughter with precancer
mother with untreated thyroid cancer (grrrrrrrrr)