RAI results - frustrating

[utahmomma]

Hi all.  Had my full body scan today exactly one week post RAI.  Haven't spoken with the doctor yet and, of course, the endocrinologist won't have the results until next week.

However . . . last week during my three visits to nuclear medicine I built a pretty good rapport with the technicians.  The one who spent the most time with me during my full dose did my full body scan.  He showed me the scan then told me what I was looking at (unofficially).  I had radiation still in my bladder and liver (to be expected he said) and a bit in my colon (also okay) however I had a very, very large area where my thyroid used to be.  

I asked him (since he's done this for 30 years and teaches it at the local med school) if this was larger than normal and he said it was - especially after a TT.  I asked him if it was malignant and he said he wasn't allowed to say anything but my uptake levels were very, very high and I should expect to have to repeat this again in about six months with a higher dose.  (To add to it, that "lump" I felt swallowing is much smaller but not gone.)

Okay, I'm completely bummed out now.  I called my sister who had Stage II and lymph nodes removed - she had to do a total of three RAI treatments.  I was hoping since I had Stage I, T1 that I was out of the woods.  Apparently no such luck.

Much as I hated going off my meds and the diet I guess I'll do it again this summer but how many other cancer patients have had to go through multiple RAI treatments?  

Gotta love the holidays.  Hope everyone has a better Thanksgiving!!

[utahmomma]

Thanks for the words of encouragement.

I haven't found a lot of literature on repeat RAI for cancer survivors.  However the nuclear medicine technician said it is not that common but he has seen it (meaning I'm one of the lucky few).  

My sister had Stage II papillary carcinoma and she told me she has had to go through three RAI treatments, each time a higher dose than the last (last dose 150mCi).  Her first treatment was immediately following surgery, the next three months later and the final one six months after that.

She should have another one (at least the scan dose) but is a stay-at-home mom for her now 9-month old and can't be radiated right now.  Her last RAI was six months before she became pregnant so she's concerned with her baby's thyroid already.

You thought I was kidding when I said my family will someday have and entire copy of JAMA dedicated to us, didn't you?  :-)

[kimcle]

I have heard of other people having to repeat the RAI.
Have you gone on to the website for people with Thyroid Cancer ?
Perhaps you will find someone with the same experience.
Thank you for sharing your experiences.
I have my RAI Dec 15th.
I was diagnosed with Follicular Thyroid Cancer.
No matter what type of cancer it is I think that once you hear
the diagnosis of Cancer, it is a scary thing.
Just keep up the faith and with the help of others we will
beat this disease!
Take Care
Kim

[angelicaofthewind]

You are very sweet, I feel the same. You have supported me all the way. Thank You!

This forum has great people with big hearts;)

[angelicaofthewind]

Sorry, I didn't see this last night was very tired from traveling & missed my bed. I hope & pray everything turns out as best as possible. With God's hand in this it shall. You are in the best hands.:) My prayers are with you.

[utahmomma]

Thanks - you always make my day.

[venora]

I will keep you in my prayers.Love Venora

[ChitChatNine]

I hope you hear soon from the Dr. re your results.  The worst part is the waiting and wondering what is next.  My Endo told me that the radiation is outpatient (used to be inpatient) but we just were talking "what if's", etc. and I most likely wouldn't be using that particular hosp. if, indeed, anything like this is necessary so I'm not really sure what the hosp. does as protocol where I'm having my surgery.

When was your surgery ?  I guess I am wondering how long do they wait to do this type of treatment after surgery?

Happy Thanksgiving .. we are inbetween turkey and desert so I popped onto the board!

Cheryl

[utahmomma]

Thank you everyone.

I actually had two separate thyroid surgeries (they didn't find the cancer until after they had wheeled me into recovery after removing the right lobe).  My first lobectomy (right) was November 2003, the left came out December 2004.  The right side contained Stage I, T1 papillary carcinoma.  

I didn't have RAI immediately after because the second lobe was cancer free (but between my two surgeries my family had a HUGE amount of papillary carcinoma so I figured I'd better get it OUT!).

The only one who had RAI immediately after was my youngest sister (24 at the time) who had stage II papillary carcinoma and some lymph node involvement.  She had RAI within just a few weeks (had to get the TSH up above 30).

The only reason I had RAI was my TSH which had been steady for a year and a half suddenly went from 0.7 to 2.1 even on .200mcg of Synthroid.  The big jump is TSH was a pretty good indicator I had aggressive thyroid tissue growing.  Turns out that was VERY correct.

I swear, my family will have an entire edition of JAMA dedicated to us.  Not such a great goal.  :-)

Happy Turkey Day everyone.  (Turkey tastes different post-RAI, great diet program)

[ceegee]

I am so sorry to hear about your results.  At least this part is over now and you can feel normal for awhile until this summer.

Have a wonderful Turkey Day and a good Christmas season.

[utahmomma]

Thanks GravesLady

I was reading the RAI protocols from the New York Thyroid Center and they hospitalize anyone receiving over 30mci.  My hospital (and the other one in this area that does RAI) doesn't hospitalize any patient - they send them home with precautions.

I received 100mci and they sent me right home.  I have an entire floor of my tiny little cottage to myself so it wasn't an issue.  My sister had 150mci and she was sent home too.  Her and her husband have a 700sq ft home so she opted for a cheap hotel for 5 days.  The technician indicated I'll probably get at least 150mci next time or more.

The New York Thyroid Center also says "Since only a minority of patients have the more aggressive form of the disease which is potentially lethal, RAI therapy is reserved only for these patients who are increased risk for recurrence and metastasis."   I had papillary carcinoma - the *least* aggressive form but apparently not with me or my genetically blessed family.  :-(  Maybe because Utah has such a large number of thyroid cancer cases per capita it's just treated with different protocols here (thank you Cold War nuclear testing in Nevada).

Oh well . . . bring on the turkey, it's Thanksgiving.  

I've had many other friends go through many other forms of cancer and I shouldn't complain!  This is a cake walk compared to my good friend with Stage III breast cancer.  I'm sure she'd trade me problems any day.

[GravesLady]

I have never read  cancer patients having more than one RAI, but that is not saying much because I am not in that world, other than here at this forum. However, I have read where people with normal thyroid having to do more than one RAI, some three, and, from what I understand its not unusual for some to have up to 5.  Some people just have a stubborn thyroid or perhaps the  nuc doc under dosed the first RAI, and possibly the second, and so on. (?)  Here is another thought. In most states if a high dose of RAI is given, it is given in the hospital with the person staying for a couple of days. This is a routine caution for high doses of RAI. Its possible that you wanted to be at home after RAI for the holiday (?) or for whatever reason, so they gave you a smaller dose than what you need, so by giving you smaller dose they would have to give  you more than one RAI to make up for the big one-time hospital dose.
If you find out the actual reason let us know and of course, keep us up dated all the way through your journey.

I do hope you can and will have a nive Thanksgiving - if nothing else but just resting and perhaps catchging up on whatever ;)