I have a similar story. July 06 TT, Sept 06 RAI, then March 07 Whole body scan no uptake. I thought I was clear. Then Sept 08 spotted a recurrence on PET scan, Nov 08 Right sided neck dissection, Dec 08 RAI whole body scan showed it was all over the neck both sides and in to the chest. Blood work showed raising TG level and I developed Paraneoplastic Syndrome (disease or symptom that is the consequence of the presence of cancer in the body, but is not due to the local presence of cancer cells) so in Sept 08 had 3rd round of RAI Whole Body scan showed uptake all over the throat and it appears to be wider spread then in December.

I have found conflicting information on Staging Thyroid cancer some say that you do not get to be Stage 4 with this cancer until it jumps out of the throat others list a stage 4a, 4b, 4c, 4d and a and b are still in the throat area, c is into the chest and d it has jumped to other organs. My Doctors are constantly telling me that I still have a good chance but they do not go into what that means. The current treatment will cure me or I will spend the rest of my life with this coming back every few years.

I too thought the RAI was supposed to take care of it. But sometimes it does not. I still decided to go for the 3rd round in September despite all the risks because to me the risk of the Paraneoplastic Syndrome was greater.

What has the latest RAI done for you? Has your doc given you any more information on what's to happen? How are you? Are you coping?
I agree about the staging, when I spoke to surgeon here last week, he was hesitant about the difference between Stage 3 & Stage 4 with all the differences between a, b, c, @ d.
I am assuming you've had the 3rd round, and are ready for the WBS again. Where are you at in regards to that? Please let me know, I would like to have a reference point in the future on what to possibly expect.
Thank you for responding to the previous cemment, I appreciate it. It helps to know I am not the only one going thru the 2nd or in your case 3rd round of cancer.
My prayers are with you.

What has the latest RAI done for you and Has your doc given you any more information on what's to happen?

I had my last RAI in September 2009 (this was my 3rd round)

Last word from my Doc was that they wanted to let the RAI have a chance to work before they decide what to do next. So in January I am having more tests and then they will decide. My concern is that in December of 2008 I had 200MCI and between 12/08 and 09/09 the area of uptake increased markedly (but nothing can be seen on CT, MRI PET scans and needle Biopsy. In 09/09 I had 200 mci more but I cannot figure out why they think it will work if it did not work in 12/08. But I also have no idea what the next step will be. Whole Neck dissection, External Beam Radiation, Experimental drug treatments? Would think I will have a WBS at the end of January.

How are you?

I am doing the best I can do. That is what I tell everybody. The Steroid treatments are becoming less effective each month so the amount of time without fatigue, brain fog, balance problems, breathing problems, and paralysis is shorter. This month they gave me 3 treatments on 3 different days in a row hoping that might extend the length of time Before I relapse but it is not working very well. They need to give me 4 weeks for my body to recover from the treatment before they can give me the next treatment. At the moment I can walk and I am still managing to work but the rest of my life is on hold. This treatment does not deal with the cancer it only deals with the side effects of having cancer.

Also since my last RAI I started developing headaches that happen a few hours after I work out I think the cancer may be in my mussels and the RAI has damaged them. I hope to see a Physical Therapist about this soon. (After my TT they found the cancer was in the skeletal muscles)

Please let me know, I would like to have a reference point in the future on what to possibly expect.

Well the 4th round starts next week. I have a blood work for my TG to be taken next week, Then in January I have a CT and Ultrasound after that I meet with my Doc to review the results. I am not certain why they are not having a WBS done at the same time but I will bet they want one after that.

I am not certain what kind of reference point I make. By the time you enter your 3rd round of treatment you are unique and so few of Thyroid cancer patients get Paraneoplastic syndrome let alone Hoshimotos Encephalopathy that I am right out there.


I hope this is helpful

Odell

Wow. The uptake wasn't so very good for me this last time. That's when they offered external beam radiation. I am real hesitant for that, even so. I am sure the RAI is not good for the body, some references also state you can have more than re-occurring cancer, possibly of a different type. Read some articles on your condition, the paraneoplasic syndrome, but not the Hashimotos.
I am scheduled to see the oncologist in Jan, I'll let you know where I stand then.
Kinda scary to be in our shoes, seems no one wants to comment on the fact that we have re-occurring here. Maybe if people don't offer their support, it won't happen to them, huh?
I am sorry that you are suffering with the complications, Odel. I lift you up in prayer.
I see you are a computer programmer. My son made a comment about sitting in front of a computer, what if the radiation from the monitor is what is causing our re-occurrance? Scared the day lights out of me cause I use a computer quite regularly. Sources say there is a increase in Thyroid cancer over the past five years, and they don't know what is causing it. Something to think about...
Have you seen any dr at that cancer center in Seattle? Could you dr refer you to them?
I don't know the name of the place but there have been several people in my are who have gone to Seattle for treatment that I know of. Seem to be getting fairly decent results, so far.
Take care, Odell.
Teuresti

Hi, I'm not sure if this will be helpful at all because my situation is not the same as yours - at least not yet. I'm scheduled for my one year follow up the last week of January. So, of course, I'm hoping the scan is clear. But for now, my comment is that I wonder why the surgeon didn't look at lymph nodes the first time around? Now for me, I actually had pain in the side of my neck (lymph nodes) when I originally went in for CT scans, etc. So, they were already pretty sure, based on the pain, that I had something in my lymph nodes. However, when you say your doc is planning to take out 2, that's where I get confused. My surgeon straight up told me that she was going to keep going until she didn't see any more Cancer. She said the lymph nodes are in groups, like little peas in a pod, or several in the same "neighborhood", so she could just take out a whole group, basically, then probe the next group to see if it looked like there was any spread of Cancer. So, in the end, they took out 14 lymph nodes to be safe, but when actually sent to pathology, only one of those had Cancer. I don't think anyone ever specifically said to me that RAI would take care of anything in the thyroid area as it pertains to lymph nodes - only in the area where the thyroid was itself, but it just may be that it was never discussed. As you know, your brain is swarming with information when you're first diagnosed and everything is happening so rapidly with doctors. Anyway, I guess I'd just be more specific with your doc when talking about the 2 lymph nodes - make sure he is planning to look for ANY Cancer no matter how many lymph nodes. All of our worst fear is to have it spread to our lymph system throughout our bodies, so if it's contained in your neck, make sure they get it all - now, before this drags on and on. I'm dreading my scan this month - so scared to hear the results. I have two young children and this whole Cancer experience just really stinks! I hope all goes well for you this time around and that it's gone once and for all!