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Old 08-01-2007, 06:51 PM   #1
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Papillary Thyroid Cancer - 2 differing doc opinions, what to do?

Hi everyone,

I was recently diagnosed with thyroid cancer and had a total thyroidectomy. Now that I have recovered from it, we are looking at RAI. My "uptake" was measured based on a tracer pill of i-131, and after full body scan, I was told my uptake was 13%.

My current doc and hospital say that because it is so high, i will get a out patient dose of RAI - 29.9 units.

2nd opinion endo says, no, be aggressive and stick with 100-150 (especially since i had lymph node infection as well).

What are other people's experiences, and what to do when differing doctors don't agree on treatment? Please help me sort this through, as I have to decide whether soon which way to go...

Thanks so much,
Fran

 
Old 08-02-2007, 09:59 AM   #2
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Re: Papillary Thyroid Cancer - 2 differing doc opinions, what to do?

It's pretty hard to decide because there are many different philosophies and studies that justify either way is correct.

My friend had thyroid cancer at the same time as me, small nodule w/spread to lymph nodes. she went to Columbia Presbytarian in NYC, and they believe in microdosing, about 40 mci, and then she had to go hypo again for follow up scans, and then she'd need more treatment if it didn't work 3 months later. It turned out fine, but her worry was that with microdosing, sometimes if you do get a recurrence, the thryoid tissue might grow resistant to treatment, and RAI won't ever work again.

On the other hand, just a few miles away, I was macro dosed to 175 mci (and I'm small), and I wish I had a more normal 125-150mci, because I had some minor salivary gland damage, which got better by itself, but still scared me nonetheless. I had spread to a muscle in front of the thyroid, and a decent size nodule (2.5cm), so it was probably better to be a bit more aggressive.

I think that's a pretty tough decision to make, and I'm almost glad I wasn't given a choice, I did what they said to do, because I'd constantly be worried I did the wrong thing.

Good luck, let us know what you decide. The truth is, some pp. don't even think you need RAI, so whatever you choose, you are going to be right.

 
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Old 08-02-2007, 05:29 PM   #3
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Re: Papillary Thyroid Cancer - 2 differing doc opinions, what to do?

Hi!
Like Reece I had pap cancer last year. Didn't have a choice with the RAI dose (150 millicuries) and hospital isolation stay. One of the endo's in the practice I go to was involved in the current treatment of pap cancer - don't know to what degree. Anyway, Must say I am glad they were aggressive. had 1 node invasion, but I wouldn't want to mess around with going back and forth for tests, and the worry etc. I had my first yearly scans and everything was negative.

To be honest, in my research and seeking opinons at Hopkins, etc the answer for me was to be aggressive. But, your case may be different. I have 2 elementary aged kids and I basically told the docs to treat me like they would their family so I can stick around a lot longer!

Hope that helps!
Kathy

 
Old 08-02-2007, 05:31 PM   #4
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Re: Papillary Thyroid Cancer - 2 differing doc opinions, what to do?

Hey, I just read that you are from Reston, VA. I live right around the corner from you - Gainesville area. Would you mind me asking who is your endo???
Take care!
Kathy

 
Old 08-02-2007, 06:11 PM   #5
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Re: Papillary Thyroid Cancer - 2 differing doc opinions, what to do?

Hi,
And thanks for all the responses. My nodule was fairly big 3.7 cm, and 6 of 9 lymph nodes were infected.

Kathy, Yes, I'm indeed from Reston! My original doctor was Dr. Frank Crantz, in McLean, but I'm not happy at all with the treatment he has given me. My 2nd opinion is Dr. Nahrain Al-Zubaidi, who so far, I think is fantastic, but she is the one recommending the more aggressive treatment.

What about you? Who is your endo? I'm considering even another opinion...

- Fran

 
Old 08-03-2007, 05:56 AM   #6
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Re: Papillary Thyroid Cancer - 2 differing doc opinions, what to do?

Hi,

I had pap with some lymph node involvement.. and the research i did indicated that if you have lymph node involvement.. that you should have at least 150 mc.. I think you are better off hitting it big..rather then having to worry about it coming back..

If your doc is still pushing for 29.9, you might want to get a second op.

29.9 is what used to be considered a 'walking dose' . That used to be the most they could give people and not isolate them in the hospital. And I think they found that it was just too low.. people would get that dose.. and need repeat treatments.. which increase your liklyhood of becoming Rai resteisnce

Molly

 
Old 08-03-2007, 09:24 AM   #7
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Re: Papillary Thyroid Cancer - 2 differing doc opinions, what to do?

Fran:
Did you try seeing Crantz's partner - Dr. Tanen? That's who I see. He is fantastic and the guru for thyroid issues. Most people with the thyroid stuff see Tanen or Rubenstein (in the practice). Tanen is highly touted by MD's in the Northern Virginia area. He did my FNA, all the treatment (except the surgery), RAI, followup etc. I had a lot of problems after surgery with calcium and still do now. He was right on the money, took me right away, doesn't keep you waiting. He calls back with results, was always and still is available to his patients. I even received calls on the weekends. He is on the cusp of leading info with thyroid cancer and follow up. Since I had my one year anniversary and went through all my scans (which were negative), I don't have to see him again til Oct.

Personally, for me, I wouldn't want anyone else treating me. He will treat according to the type of cancer you had. Mine was multifocal pap cancer so he was aggressive. Still the same outcome with prognosis, etc.

I have never seen Crantz. But, I have seen him in passing in the office. Call the office and request Tanen. But, this may be a moot point for you since you have another endo.

I had the surgery and RAI done at Fairfax (9th floor - penthouse suite - haha). 2 day stay. Prepare for isolation. Seriously, it wasn't bad. The nuke people there are fantastic. Very informative, even after discharge. The room is huge with a window view. Food is horrible!! bring your own!

Hope this helps.

Kathy

 
Old 08-07-2007, 06:01 PM   #8
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Re: Papillary Thyroid Cancer - 2 differing doc opinions, what to do?

Hi Kathy,
I have seen Tanen around the office -- he always seems so nice and calm . But I figure they won't let me just switch within the practice. Oh well. I'm curious -- how is your cancer now? All clear? And for how long? It was a scary diagnosis for me to receive at first -- slowly, I'm coming to terms with the fact that it isn't so bad, at least not the end of the world...
- Fran

 
Old 08-08-2007, 05:24 PM   #9
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Re: Papillary Thyroid Cancer - 2 differing doc opinions, what to do?

Fran:
You should definitely try to see Tanen. He is reassuring, has a sense of humor and can relate to his patients. The girls in the office are nice and tell them you want to switch. There shouldn't be any hassles. If they ask tell them your doctor recommended him.

Anyway, I just passed the one year mark in June. The cancer is gone. that's a relief. Still have calcium issues since a parathyroid got distrubed and reimplanted. It was a long year. I have gained 35 pounds - who said you lose weight on thyroid meds???? Don't know if I would have made it through without family support and of course, Dr. Tanen.

I was certainly freaked out with the whole cancer dx. You hear the C word and you think the worse, especially since I have two small kids - one has special needs. Anyway, I went to Hopkins and got a surgical opinion and they told me the same thing Dr. T. said. - be aggressive with the RAI and get the whole thing out. I chose a surgeon and friend of Dr. T's to do the surgery at Fairfax. Every doctor says the same thing - at least it's thyroid cancer - but still it's cancer!

How about you? What have you decided to do with the RAI?? You have some time. Hope you are not off your meds yet until you decide. It's been a rough couple of days lately. the heat is maddening! I hope you are feeling better. If you have any other questions, please post. This board really helped me get thru the tough times.

Take care and stay cool!
Kathy

 
Old 08-23-2007, 06:31 AM   #10
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Re: Papillary Thyroid Cancer - 2 differing doc opinions, what to do?

Hi Kathy,

Sorry for the late reply. I ended up going with Dr. Crantz's recommendations. Even though the other endo gave me a different opinion, I guess though I don't like him, something made me trust his method -- I don't know why. But we will see what happens in a few months when I go for my scan! He says there is a 70% chance that I will not have to repeat this treatment again. Let's see.

I had no side effects whatsoever, which was a pleasant surprise. Drank lots of water though. I also have 2 young children (4 and 2) so I was out of the house for almost 10 straight days. That part was really hard, and I really missed them.

It is nice to be back home

Thanks for much for all your support and advice! And I'm glad to hear that you are doing well now, yourself.

- Fran

 
Old 08-23-2007, 09:05 AM   #11
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Re: Papillary Thyroid Cancer - 2 differing doc opinions, what to do?

Fran:
I was wondering how you were doing. I did the same thing with my kids. Ended up going to a hotel after I got out of the hospital. You should be fine! Crantz's partner Dr. Rubenstein (who is really nice) apparently helped edit and review the treatment for pap cancer for the American Society of Endocrinologists (or some group like that). Anyway, all those docs practice the same treatment guidelines.

You will be fine!!! I'm glad everything worked out for you. I really wish the best for you and your family. Take care!
Kathy

 
Old 02-07-2008, 02:20 PM   #12
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Re: Papillary Thyroid Cancer - 2 differing doc opinions, what to do?

Quote:
Originally Posted by kwebster View Post
Fran:
Did you try seeing Crantz's partner - Dr. Tanen? That's who I see. He is fantastic and the guru for thyroid issues. Most people with the thyroid stuff see Tanen or Rubenstein (in the practice). Tanen is highly touted by MD's in the Northern Virginia area. He did my FNA, all the treatment (except the surgery), RAI, followup etc. I had a lot of problems after surgery with calcium and still do now. He was right on the money, took me right away, doesn't keep you waiting. He calls back with results, was always and still is available to his patients. I even received calls on the weekends. He is on the cusp of leading info with thyroid cancer and follow up. Since I had my one year anniversary and went through all my scans (which were negative), I don't have to see him again til Oct.

Personally, for me, I wouldn't want anyone else treating me. He will treat according to the type of cancer you had. Mine was multifocal pap cancer so he was aggressive. Still the same outcome with prognosis, etc.

I have never seen Crantz. But, I have seen him in passing in the office. Call the office and request Tanen. But, this may be a moot point for you since you have another endo.

I had the surgery and RAI done at Fairfax (9th floor - penthouse suite - haha). 2 day stay. Prepare for isolation. Seriously, it wasn't bad. The nuke people there are fantastic. Very informative, even after discharge. The room is huge with a window view. Food is horrible!! bring your own!

Hope this helps.

Kathy
I recently had a thyroidectomy (total) Papillary cancer was discovered. My surgeon will not let me take any thyroid meds. and I don't think I can wait until after the RAI. I have told my Dr. that I have read that some patients continue to take meds. up until the RAI, but she refuses. Can someone let me know if you were able to take thyroid meds. after surgery and before RAI

 
Old 02-07-2008, 02:32 PM   #13
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Re: Papillary Thyroid Cancer - 2 differing doc opinions, what to do?

This is a really old post, you may want to start your own fresh one.

I had RAI for pappillary with no meds at all, but you can ask your dr. for cytomel, and can have it until 2 weeks prior to RAI, and then you have to stop anyway.

 
Old 02-08-2008, 05:18 AM   #14
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Re: Papillary Thyroid Cancer - 2 differing doc opinions, what to do?

Quote:
Originally Posted by vcan303 View Post
I recently had a thyroidectomy (total) Papillary cancer was discovered. My surgeon will not let me take any thyroid meds. and I don't think I can wait until after the RAI. I have told my Dr. that I have read that some patients continue to take meds. up until the RAI, but she refuses. Can someone let me know if you were able to take thyroid meds. after surgery and before RAI

No, I was not able to take the meds.

The people who are taking the meds prior to a scan are using Thyrogen. Newly diagnosed patients generally don't get this. You gotta do it the hard way at first.

 
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