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Help Did not have radiation Pill

tklaiber
Posts: 1
Joined: Mar 2010

I had my thyroid out 2 years ago. Went thru the depressed/tired period & over it now. I was assured by both the endro and the surgeon that I did not need radiation pill. I feel fine; am on 275 Synthyroid. Have regular work ups and have had an ultrasound this year. My GP had me have a complete PET this fall because I also have pre-Barretts & esophageal spasms. Those are getting better as well.

I guess what I am asking after reading this board how many others had macro cancers that did not require radiation and are u doing ok?

IowaBo
Posts: 32
Joined: Feb 2010

Hi,
My surgeon says RAI is not always indicated. If you only have 1 small cancer, are under 45 and stage 1 you might not need it. That is for the patient and doctor to discuss and for you to decide.

Survivor73
Posts: 135
Joined: Oct 2009

Hi There. I had a TT in July 09. I was told that I was cured and didn't need RAI.
Had 2 nodules, both infected with pap cancer one was 2cm, one 1.8 cm and I am 42. Stage 1.
According to the Endo and the surgeon, I don't need RAI.

I have 2 sisters and a nephew with Thy Cancer. So I was more educated on RAI then most people.

I pushed for proof that I didn't need RAI and since it took so long for appt's, etc, I had a thyrogen test about 3 months agoa that showed a level of 2. Based on this, I just had an ultrasound and she confirmed there are a few spots showing thyroid cells. (That's all she would say during the exam.)

I am waiting to see the Dr for the results, and I am guessing that they will now suggest RAI, but I'm still not sure.

They have this new process that gives a % of reoccurance rates in people under 45. If I was 3 years older, then I would require RAI...it seems weird that there is magic age for this stuff.

Anyway, I will keep you updated when I get the results.

Survivor73
Posts: 135
Joined: Oct 2009

I had my ultrasound done & they found something...they are not sure what it is, but it's 8mmx6mmx4mm. So now I have to get a biopsy done...I feel like I'm back to square one and here we go again. The Dr's link it might be scar tissue. I had a TT in July 09 and they say that cancer can't grow that fast...I'm still numb...I'm looking at my kids...12 & 8 and don't know what to do....I told my son (12) that I had cancer, but I was cured with the surgery and not to worry...how do I say, well maybe it's back...

Ok, so I'm just really freaked out...I hate waiting. I found out Monday and I still don't have a date for the biopsy...I called and was told it takes a while to get the date...I'm guessing that the appointment won't be too soon.

Ok, I've vented enough...sorry for my ramblings...I just don't want to do this again.LG

butterfly123
Posts: 52
Joined: Feb 2010

Hi there-
I am suprised that your doctor said no RAI needed, especially with the size of your thyroid nodules. I thought anything over 1CM was a most definte to get the RAI although I understand why you would not want it if not 100% necessary.

I hope you can get in relatively quickly for your biopsy. The good news is that a thyrogen stimulated Thyroglobulin of 2 (assuming you have no antibodies) is very low especially post TT without RAI. Without having the RAI previousily, the thyroglobulin level is not a good indicator of recurrent thryoid cancer. The thyroglobulin could be coming from left over thryoid cells or tissue.

I was told I would probably be cured too with surgery and RAI. I was also stage 1 about 5 years ago (diagnosed with papillary TC). If I was over 45, but I am not, I would now be the highest stage IV. Nothing is 100% certain...when my Thyroglobulin started to rise a year ago, the endo actually thought the test was wrong. I hoped and prayed that someone somewhere in a lab made a big mistake. Well here I am 18 months later with TC still in my body. My doctors are wonderful but the process takes forever. So I feel for you and all the other TC patients out there who wait, watch and wait. It drains us mentally. Papillary TC in most cases is slow growing so in that respect we are all fortunate to have the time to make our health decisions, etc.

It's ok to vent....I have been venting for 18 months now. Best of health to you and I hope you'll find out soon what is going on.

Survivor73
Posts: 135
Joined: Oct 2009

regarding the why's on no RAI...the Dr's I'm seeing are coming up with the new process or rules on when RAI is required...they have the outlook that RAI does not cure & it's used too much when not needed. The surgeon is supposedly the best in his field & the endo is Dr. Thyroid...but I don't know. I see another endo for my meds, etc & he said I needed RAI...even tried to book me through his hospital, but they said if I didn't have my surgery there, then I can't get RAI there...how stupid is that!!

Anyway, that is why I pushed for reasons why I don't need the RAI, so they did the thyrogen test...when it showed a 2, then the ultrasound...and now here I am waiting for biopsy.

I'm glad I pushed, but wonder what would be happening if I had not...

We all have to remember that Dr's are seeing 100's of paitients and if we want our treatment to be the best, we have to be our own advicates...

I'll update once I know something...

butterfly123
Posts: 52
Joined: Feb 2010

Yes, please let us know once you know something. Intersting on your doctor's perspective...I have not heard that RAI does not cure. I have not read through the revised protocol for thyroid nodules issued by the ATA. I'll have to check it out.

Good luck and look forward to your update!

Survivor73
Posts: 135
Joined: Oct 2009

What the Dr. said was that surgery is the best cure for TC, and RAI is sometimes necessary and can help shrink thyroid cells if they are normal or cancerous. RAI will not entirely wipe out the cells altogether, but surgery can remove them all...

Thus, RAI is not a cure...but surgery is & that's the best route. When the TC has spread, and you can't find all of the spots of thyroid cells, then RAI is the best helper to the surgery.

It makes sense when you hear it this way...but it's still scary to think that there is really no cure for cancer, but with thyroid cancer, since we can have the entire thyroid removed and live a "normal" life, it is sortof curable. Obviously this was not written by someone going for yet another blood check or unltrasound to see if it has come back...

I will write once I hear something regarding the biopsy.

Take care.

IowaBo
Posts: 32
Joined: Feb 2010

I have been told just the opposite. Surgery can't remove all the tissue no matter how good your surgeon is there will always be some remaining tissue. The RAI will gradually kill all of the remaining thyroid tissue and cancer that is in it through out your body. My Endo. says it will keep working for 6 months. I had mine on 2-17 had a body scan on 2-24 with 4 uptake areas in my neck. Nothing in chest or abdomen thank goodness. Blood tests in 3 months and then I will go for an ultrasound in 6 months to see if it's all gone. Another body scan in a year if the ultrasound doesn't show anything. A new "normal" I guess, but as long as it keeps me alive that's OK.

Survivor73
Posts: 135
Joined: Oct 2009

Ok, so I was stressed about not getting a date for the biopsy...then when I got the call, it was a week later...I thought...wow I had to wait like 5 weeks for my first biopsy...why so quick now? Was I put on the fast list because it may be more serious??

Your mind plays funny games when stressed....

Anyway, I went on March 31st for the biopsy...it was with ultrasound, so they could find it since the nodule was so small.

The Dr doing the biopsy takes a look and says I don't think I can biopsy this...it's too close to your artery and it's too small. Since it was next to the artery, it moved every time my blood pumped. he said it would be like hitting a moving target and since it's so small, there would only be a 10% chance that the samply would tell anything.

Since the possible risk (hitting the artery) was too great, they didn't do it.

But, they confirmed that it was definately thyroid tissue.

When I had seen the Endo regarding the nodule in the first place, he said it was likely just scar tissue...and not to worry. Cancer couldn't grow that fast. (my surgery was 9 mths ago)

So now what???

I haven't heard from my Endo yet...I'm waiting for a call. The reports usually take about 2 weeks to get t0e the Endo, so I will call him in a few days if I don't hear anything.

I asked the Dr that did the scan to write how he felt that it was not scar tissue and that it looked like thyroid tissue...

So, either the surgeon missed a piece 8mm or it has grown that fast...in 9 months...

Regardless, I am guessing at the least another surgury & this time RAI...or they could wait 3 mths to see if it still grows...

I am so sick of waiting...I'm only finding all of this out since I pushed them to prove to me why I didn't need RAI...what would have happened if I hadn't said anything???

I feel like I have to take care of myself, my family deal with the cancer and having no thyroid, oh, and train the Dr's so they do what I need...

And since they control what treatment I get, I'm totally screwed...(sorry for the language)

Hopefully I will find out this week what the next steps are...I wish I knew, I feel like I once again have no control over my life...will I be off for surgery again? go for RAI and have to avoid my kids? My daughter is 8 and we did not tell her that I had Cancer the first time...what now?

OK, I've gone on too long...sorry, I don't really have anyone to talk to about this...my hubby is in denial...he's just like, you'll do whatever the Dr says...nothing you do now can change that...worrying won't help, etc...he doesn't get it...

Survivor73
Posts: 135
Joined: Oct 2009

Ok, now what...I called the Dr to find out what's next and the nurse says...he saw the report and didn't ask to see you.

My next appt is July...so what, I just wait until then??

I told her that I needed to speak to him sooner, I got the "he's too busy and that's the next appt that I can do". I about took her head off, asking for the report to be sent to my other Endo so he can follow up if this Dr is too busy to treat me...then she backpeddled.

Now, I have a request for the Dr to call me...which is a charge of $30.00 for the first 5 minutes...

Why do I have to fight to get treatment?? I'm so lost as to what I should be doing. I just want it to be over...my anxiety is hitting the roof...

butterfly123
Posts: 52
Joined: Feb 2010

sorry you have to go through all of this and the stress.

A couple of things come to mind when I read your post. I thought that the only way to confirm if the nodule is thyroid cancer is either by retesting it after it have been removed surgically OR positive biopsy. Also, since you have papillary thyroid cancer (is that correct?) your thyroglobulin level (post TT & post RAI & in the absense of antibodies) should be a very good indicator of residual disease. Have you had your thyroglobulin level tested recently (either hypo or with thyrogen injections)?

I know it is very hard not to worry. I have been living with recurrent disease for 18 months.

weberdns
Posts: 156
Joined: Mar 2010

I think that you need to get another doctor. One who can't see you until July and charges to talk to you....well that is just totally unreasonable. Plus he didn't call to talk to you about the report. Well that is totally unacceptable. Find a new doctor and then tell them you are leaving the practice and why!! This is totally unacceptable!!

weberdns
Posts: 156
Joined: Mar 2010

Sorry that this happened to you. I would talk to the end and see what happens next. I wouldn't accept that it couldn't grow that fast. I would demand surgery and get the biopsy done!

butterfly123
Posts: 52
Joined: Feb 2010

I agree that you should find a new doctor that is willing to work with you and talk to you live. Unfortunately thyroid cancer patients are put on the standard assembly line of treatment and docs take the causual attitude that it is "slow-growing" and "only thyroid cancer." That is SO WRONG!!! Not all thyroid cancer grows and/or acts the same way. Stay strong and please let me know if I can help. I dumped my first endo so I have some experience :) Stay strong and positive. Wishing you well.

Survivor73
Posts: 135
Joined: Oct 2009

So, he says that the radiologist had no business telling me that it's thyroid tissue...he thinks it may not be and could be a normal node...or something, can't remember what he called it. the radiologist did not imply this was the case...

the Dr wants to wait 6mths and ultrasound again to see if it grows...or do another thyrogen test.

I had my thyrogen test - it came back as a 2. (low positive) Since I didn't have RAI after my surgery, he stated this is not alarming.

The Endo did say that if I wanted to, I could have RAI, but he also said that if this is thyroid material, it would only shrink it by half at most.

I don't know what to think anymore...I'm seeing another Endo on Thursday (I have two - one for adjustments to my drugs, the other that works at the same hospital as the surgeon)

I'm going to see what he says based on the status as of today.

I feel like I was hit by a truck today...I just want to go to bed and cry...Of course I can't do that until I get the kids to bed...finish the dishes, blah blah blah...

how do I deal with the next 6 months?

Any advise on the waiting and living without knowing for sure?

barbwk
Posts: 1
Joined: Mar 2010

Does anyone out there know what levels are supposed to be to be ok to be around my small grandchildren (4 month twins)? The day I took the pill it was 14 and 4 days later it was 2 something. The tech said that still meant that I couldn't move back in with my husband or have a long lunch with someone or see my grandbabies. But... what is the magic number. I have searched the internet and cannot find any levels and what they mean.

weberdns
Posts: 156
Joined: Mar 2010

Call your nuclear med tech at the center where you received your treatment and ask!

nasher
Posts: 507
Joined: Apr 2010

alot of times the nuclear med tech are not allowed to give the results to you.

hopefully the reason the doctor didnt need to see you is you got a clean scan but honestly i would prefer if they said that or such.

waiting for my RI treatment and hopeing

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