Finally Got Some Answers

I had questioned why I was still on diet and still hypo and why a second dose etc..  Well I finally got some answers.  My one year scan showed I now have a tumor and so they want to do a second dose of RAI.  My first dose was 187 whatever you call it and now the second is supposed to be maximum.  I was told a tumor has a little tougher time absorbing the radiation and the first dose was shared with trying to kill any remaining thyroid tissues.  So the second is supposed to really concentrate on the tumor. The being hypo is by far the hardest part, except for the waiting and not klnowing what is going on.  Does anyone else feel like they don't seem to get the whole story from their doctors unless they really pin them down and ask questions? 

 

On 3/30/2008 mjseyb wrote:

I had questioned why I was still on diet and still hypo and why a second dose etc..  Well I finally got some answers.  My one year scan showed I now have a tumor and so they want to do a second dose of RAI.  My first dose was 187 whatever you call it and now the second is supposed to be maximum.  I was told a tumor has a little tougher time absorbing the radiation and the first dose was shared with trying to kill any remaining thyroid tissues.  So the second is supposed to really concentrate on the tumor. The being hypo is by far the hardest part, except for the waiting and not klnowing what is going on.  Does anyone else feel like they don't seem to get the whole story from their doctors unless they really pin them down and ask questions? 

I do feel like my Doc does not tell me everything.  I feel like I should find another one. I am also hypo right now, and really don't remember how we did things 1 1/2 years ago, my mind is not that great since all this 3rd stage Cancer stuff.  I feel like I'm bothering my Dr's office when I call to ask questions.  I know I should not feel like this but I do !   I am off the Synthroid and getting ready for WBS and Radiation again. Best of luck with everything God Bless!

 

On 3/30/2008 mjseyb wrote:

I had questioned why I was still on diet and still hypo and why a second dose etc..  Well I finally got some answers.  My one year scan showed I now have a tumor and so they want to do a second dose of RAI.  My first dose was 187 whatever you call it and now the second is supposed to be maximum.  I was told a tumor has a little tougher time absorbing the radiation and the first dose was shared with trying to kill any remaining thyroid tissues.  So the second is supposed to really concentrate on the tumor. The being hypo is by far the hardest part, except for the waiting and not klnowing what is going on.  Does anyone else feel like they don't seem to get the whole story from their doctors unless they really pin them down and ask questions? 

Re:  Docs & not getting all answers - ALL THE TIME - that is why we all share on the message boards!  I have learned more here than I ever have from my doctors! 

For me I had to drink liquid RAI in a hospital padded down room & stay for 6 days.  I decided instead of seeing it as scary & harmful to my body I would just talk to my body & explain that the RAI was being given to me to remove the bad things but that the rest of my body would be fine. 

I lost my ability to taste & smell, & had blurry eyesight for about a month (no one told me that could happen so I didn't know) but all returned to normal.  I never felt sick to my stomach or anything like that during my hospital stay but really did not eat much as I just wasn't interested .  

I asked an alternative/regular doctor about doing the RAI & her response was that regular medicine is beneficial - to do the treatment & then to follow up with things that would later help the body remove the toxins that are left over.  (She has had cancer herself so I really feel she is invested on all levels.)

Blessings to you, KathyMMM 

If I were you I would ask for (or order) all your path reports an scans on disc etc. I found out my daugther had lympovascular invasion months after her surgery by reading her path report. I wasnot happy since although it does not change the prognosis, it DOES change how it's followed. I read that it increases the chance of recurrance SO it needs a closer follow up then regulary stage 1 with tumor under 2 cm.  She had 3 cm tumor and lymph node mets.  So, I had to search for this only to discover it THEN research it myself because docs DO NOT tell patients this. I think it's because they don't want to alarm us and they are trained to TELL us not teach us what is going on with our illness based on their UNDERSTANDING. Which is not fair since if someone wants to know, they should be able to know! period.

Anyway, if I didnt have this site and the yahoo site to run through and learn and get great doc info, I would be nuts.

Glad for the internet. GREAT tool when dealing with these sorts of things.

Just learn and be educated and keep all your recrods of bloodwork/labs/scans ultrasounds etc.  It' s a good investment in yoru health.  Just don't get kooky when looking on line since it can be overwhelming at times.

GOod luck and all my best.  DP