results of total body scan

Just had R-131 last thurs. and had body scan yesterday. The Dr. called today and said there was activity in the neck which is common but no signs of spreading. I have to do another scan in 6 months with I-123. Is that the best possible outcome? I don't know what I thought I would hear. Of course Im so happy it didn't show spreading but the thought of going off meds and doing LID again in 6 months is dreadful. Is that just standard treatment for thyroid cancer? By the way, I was diagnosed with papillary with follicular variances thyroid cancer. Had total thyroidectomy and R-131 8 days ago.

I just had an appointment with my endo to prepare for the WBS and RAI. I was told that some activity in the neck is expected. The surgeon removed your thyroid for the most part, but there are usually cells left behind to varying degrees. It is those cells that are taking up the iodine. The RAI should kill them and the repeat scan is probably to make sure they were killed. Does your doctor use thyrogen? Maybe for the repeat scan you can say on your meds and use thyrogen instead.

Danielle

That's exactly the results you want.  There is always thyroid tissue left because the surgeon would run the risk of damage to parathyroid glands, larnyx and vocal cords.  So the uptake in neck and thyroid bed is always expected.  Also in the bladder because that is the main way RAI escapes from your body; body waste.

Definitely look into thyrogen; no need to go hypo for what you've already been through or for follow up with RAI tracer.  Do some homework on it and read current postings on it as well as go back several months to some other good postings.

Tracers are run either 6 months or 1 year post RAI ablation.  You will have this type of follow up for the rest of your life.  Recurrence is always a possibility.  Better safe than sorry!

Congratulations!

I had my TT in July of 07.  I'm doing my 3rd WBS on Monday.  I choose to go hypo this time.  I got my 131 this past Wed and have been on my LID and off meds for the past 6 weeks.  My last thyroglobulin went above 2.0 so I guess there goes my 1 year clearence.  We'll see what happens after mondays scan.

It is very important the you do a follow up in 6 mo.  What I got from my medical team is that they want 2 back to back clear scans and labs before I graduate to doing this once a year.  Good Luck and stay o top of your sisuation.

Hi Tracy

I'm sorry your last tg went above 2.0. You said you opted for withdrawl this time. Does that mean you have only done thyrogen in the past? What made you decide to go hypo this time. If this has been covered in another thread I apologize. I can't keep them straight if I miss a couple of days here and there. So you need to be followed every 6 months with a scan until you have 2 years clean and then it's yearly? My husband is every 3 months with blood work and exam-- but no scan. Only scan will be at the one year mark in March. I'm just curious about your going hypo this time and is this for the scan? Are you also having another treatment as well? (high rai dose) Good luck, I hope this all goes well.

Karen

Ooops, I see from the post, now that I can see it, that you had your 131 Wednesday and your scan is tomorrow. Please ignore that part of my question. Sorry...

 Karen

 

On 10/12/2008 Karen321 wrote:

Hi Tracy

I'm sorry your last tg went above 2.0. You said you opted for withdrawl this time. Does that mean you have only done thyrogen in the past? What made you decide to go hypo this time. If this has been covered in another thread I apologize. I can't keep them straight if I miss a couple of days here and there. So you need to be followed every 6 months with a scan until you have 2 years clean and then it's yearly? My husband is every 3 months with blood work and exam-- but no scan. Only scan will be at the one year mark in March. I'm just curious about your going hypo this time and is this for the scan? Are you also having another treatment as well? (high rai dose) Good luck, I hope this all goes well.

Karen

Hi Karen,

My follow up's are labs and dr visits every 3 months and scan every 6 months till I get 2 back to back clear scans.  My first scan was a few months after my TT.  It was in October of 07 I went hypo, had a big dose of RAI I think it was 150 and had uptake on that scan, 2nd scan was in April 08 (thyrogen) RAI dose 3 and got a clear scan, 3rd scan tomorrow, went hypo RAI dose 5.  I was hoping that this scan would be clean so that I could graduate to annual scans but with my thyroglobulin up, I guess I'll just have to wait and see.

About my thyrogen choice, it was just that.  It was a choice that I made based on a number of things that I have read that produced questions that I wasn't happy with the answers that I received.  Most people have no problems with thyrogen and I must agree that the process is much easier to tolerate but it wasn't about that for me.  I have a lot of flexibility with work and a wonderful supportive husband and kids that make hypo be not as bad.  Either way you go you still have to be on the LID and that's the WORST part for me!!

So my thyrogen questions were on the grater possibility of getting a false negative scan and labs vs going hypo and the answer that I got was that may be true but it's a lot more convenient than going hypo.  I live in Hawaii and even though thyrogen has been around for a while, I was the 3rd person to get it here.  So needless to say, the hospital that I did it at had a lot of questions on protocal and what days I needed to do shots and labs and when to scan. That worried me in it of itself.  Like everything else there are positives and negatives to.  I was not willing to give up accuracy for convenience no matter what. 

Now that my thyroglobulin is up, I question the fact that when I did my last scan(thyrogen) my thyroglobulin on the day of the scan was <0.02.  Now is my increase something new or was it masked the last time due to the thyrogen?  I guess I have to wait and see what my scan says. 

Going hypo takes a lot from you and I know that's why alot of peolpe do thyrogen.  I am not antithyrogen.  If it means people do their follow up's because of it vs not doing anything because it's too much of a pain in the butt that by all means do the thyrogen.  I'm very interested to see what my scan show's.  I have always been someone that trust my gutt and this is what my gutt told me what too do.   I hope that makes sence =) !

Keep intouch !!!

Tracy

Hi Tracy

 Thanks for replying and explaining your thought process. I can't get enough of that nowadays. It helps my husband and I to know what other people are doing and more importantly...why. You did just that for us and I can't tell you how much we appreciate that. Please please let us know how the scan goes and we are praying for you and thinking positive thoughts. Take good care...

 Karen