Guest guest Posted August 20, 2003 Report Share Posted August 20, 2003 It seems like everyone posting here has had or will be having an RAI treatment and I would like to hear from anyone who did not. I had a tt for pap thyca w/follicular variant (1.1 cm no lymph node involvement) on 6/10/02. I finally had my first appointment with an endo this week and he said that I would not need RAI. His office coordinated with my GP in early July and I was put on cytomel 7 weeks ago and had an isolation room scheduled for 9/11, so this took me by surprise. Needless to say I was very relieved and took a synthroid pill asap. But, now that I've had a few days to think about it, I'm wondering if it's the right decision. Not that he gave me a decision, he just said, " we will not be doing RAI, but will follow up with ultrasounds and blood tests " (the first baseline ultrasound in Feb. 04). This endo only sees thyroid cancer patients, so I felt that I would be comfortable with his treatment plan, but now I'm not so sure. Any advice? For anyone out there that did not have RAI, did you have a choice and how are you being monitored? Teri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2003 Report Share Posted August 20, 2003 Hi, Teri - Based on what I have learned from this group over the years, I would feel very uncomfortable foregoing RAI ablation for a tumor of that size. I'm curious what type of blood tests your endo plans on using to monitor you. We are usually monitored for recurrence with RAI scans and blood tests for Tg (thyroglobulin), but these tests are rather meaningless without a prior RAI ablation. Here is the link to a letter I wrote in response to a similar question (note that the writer's original tumor was <.2 cm) ... http://groups.yahoo.com/group/Thyca/message/28255 (includes links to other archived letters from the doctors, and from members with recurrences after many years) NYC baughht wrote: > It seems like everyone posting here has had or will be having an RAI > treatment and I would like to hear from anyone who did not. I had a > tt for pap thyca w/follicular variant (1.1 cm no lymph node > involvement) on 6/10/02. I finally had my first appointment with an > endo this week and he said that I would not need RAI. His office > coordinated with my GP in early July and I was put on cytomel 7 weeks > ago and had an isolation room scheduled for 9/11, so this took me by > surprise. Needless to say I was very relieved and took a synthroid > pill asap. But, now that I've had a few days to think about it, I'm > wondering if it's the right decision. Not that he gave me a > decision, he just said, " we will not be doing RAI, but will follow up > with ultrasounds and blood tests " (the first baseline ultrasound in > Feb. 04). This endo only sees thyroid cancer patients, so I felt > that I would be comfortable with his treatment plan, but now I'm not > so sure. Any advice? For anyone out there that did not have RAI, did > you have a choice and how are you being monitored? > Teri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2003 Report Share Posted August 21, 2003 Hello, NO I had RAI, 1 very small encapsulated papillary. All my dr's say it's standard procedure, I've had clean scans every year since. Best wishes, Lynn in New York PT 1/00, TT 3/00, RAI 5/00, clean scans 9/01 & 10/02, next one 10/03? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2003 Report Share Posted August 21, 2003 Teri: I didn't have RAI either on my surgeon's and endo's decision. I am followed by bloodwork and ultrasound. So far so good. This is now 10 years. I wouldn't worry about it unless they " see " something later on down the line. RAI will still work then as long as you and your doctor are vigilant about your testing. I don't even have an ultrasound yearly now, but about every 2 years. Bloodwork is done 4x a year unless I have a change in meds so it's usually more than 4x. I get a TG test every time. We are in the minority here and I'm thankful that I don't have to do the hypo thing so far. From what I hear, it's the doctor's call to do or not to do the RAI depending on your situation. Take care, Lin in Pa. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2003 Report Share Posted August 21, 2003 Hi Teri, Ihad my TT on 6/11/03 and was on cytomel until lassst Monday. I'm getting a blod test today and my RAI Monday, I had 3 microscopic pappilary cancers on my thyroid-really tiny. Three doctors gace me a choice, so to speak, but all recommended RAI. My endo told the nuc dr. he only wants me to have 30 mci, and I think, seems to believe it will mostly be a good idea because of follow up testing. I kept saying maybe I should get stronger RAI, because of what I've read here, but he disagrees, so I'm going with it. Sometimes one's age has to do with their decision. I'm 62 and that seemed to be relevant, I guess you could get another opinion. Marilyn JR [ > It seems like everyone posting here has had or will be having an RAI > treatment and I would like to hear from anyone who did not. I had a > tt for pap thyca w/follicular variant (1.1 cm no lymph node > involvement) on 6/10/02. I finally had my first appointment with an > endo this week and he said that I would not need RAI. His office > coordinated with my GP in early July and I was put on cytomel 7 weeks > ago and had an isolation room scheduled for 9/11, so this took me by > surprise. Needless to say I was very relieved and took a synthroid > pill asap. But, now that I've had a few days to think about it, I'm > wondering if it's the right decision. Not that he gave me a > decision, he just said, " we will not be doing RAI, but will follow up > with ultrasounds and blood tests " (the first baseline ultrasound in > Feb. 04). This endo only sees thyroid cancer patients, so I felt > that I would be comfortable with his treatment plan, but now I'm not > so sure. Any advice? For anyone out there that did not have RAI, did > you have a choice and how are you being monitored? > Teri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2003 Report Share Posted August 21, 2003 I'm 13 months post-op and I did not have RAI. However, that could change after my scan today. If it's positive, I'm having RAI on Monday. My oncologist said if it's negative, he sees no point in doing RAI. Because I haven't had RAI, he's expecting to see a small accumulation of cells in the immediate thyroid area, but is going to pay careful attention to cells anywhere else. I've been planning on RAI, since I don't want to feel dissappointed and because I've read enough letters from this list to know my odds of not having it after the first scan are pretty slim. My endo is pretty aggressive. She likes to do RAI no matter what. The oncologist is middle of the road. BUt my ENT, who's been my MD for a year post-op, wasn't even going to do a first scan for another year and didn't see a need to do RAI after surgery. He said that papillary thyroid carcinoma grows so slowly, that there was no reason to treat it aggressively. I had two tumors, both encapsulated in my thyroid: a 2.4 cm in my right lobe and a 3mm in my left lobe. -Kelley Anyone not have RAI? It seems like everyone posting here has had or will be having an RAI treatment and I would like to hear from anyone who did not. I had a tt for pap thyca w/follicular variant (1.1 cm no lymph node involvement) on 6/10/02. I finally had my first appointment with an endo this week and he said that I would not need RAI. His office coordinated with my GP in early July and I was put on cytomel 7 weeks ago and had an isolation room scheduled for 9/11, so this took me by surprise. Needless to say I was very relieved and took a synthroid pill asap. But, now that I've had a few days to think about it, I'm wondering if it's the right decision. Not that he gave me a decision, he just said, " we will not be doing RAI, but will follow up with ultrasounds and blood tests " (the first baseline ultrasound in Feb. 04). This endo only sees thyroid cancer patients, so I felt that I would be comfortable with his treatment plan, but now I'm not so sure. Any advice? For anyone out there that did not have RAI, did you have a choice and how are you being monitored? Teri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2003 Report Share Posted August 21, 2003 > > It seems like everyone posting here has had or will be having > an RAI > > treatment and I would like to hear from anyone who did not. I > had a > > tt for pap thyca w/follicular variant (1.1 cm no lymph node > > involvement) on 6/10/02. I finally had my first appointment with > an > > endo this week and he said that I would not need RAI. His > office > > coordinated with my GP in early July and I was put on cytomel 7 > weeks > > ago and had an isolation room scheduled for 9/11, so this took > me by > > surprise. Needless to say I was very relieved and took a > synthroid > > pill asap. But, now that I've had a few days to think about it, I'm > > wondering if it's the right decision. Not that he gave me a > > decision, he just said, " we will not be doing RAI, but will follow > up > > with ultrasounds and blood tests " (the first baseline ultrasound > in > > Feb. 04). This endo only sees thyroid cancer patients, so I felt > > that I would be comfortable with his treatment plan, but now I'm > not > > so sure. Any advice? For anyone out there that did not have > RAI, did > > you have a choice and how are you being monitored? > > Teri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2003 Report Share Posted August 21, 2003 When a person first is diagnosed with thyca, what are the chances that they know anything about RAI? I had no idea- what- questions- to- ask -as we took things step by step. Biopsy, surgery, wait, scan. Niether my husband nor I knew that this cancer was any different from other cancers or that it was handled differently. I was overjoyed to hear the surgeon say that I would not need chemo! To us at that time cancer was cancer and no doctor told us otherwise. We didn't know anyone who had ever had thyca to talk to at that time. It was years later that I found this group. It's better to have the group to walk you through the steps than to have to do it the way we did. Lin in Pa. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2003 Report Share Posted August 21, 2003 I felt wonderful on cytomel right from the time of my surgery, 6/11/03 up until 8/11/03 when I stoped for hypo/lid. Marilyn JR > > > It seems like everyone posting here has had or will be having > > an RAI > > > treatment and I would like to hear from anyone who did not. I > > had a > > > tt for pap thyca w/follicular variant (1.1 cm no lymph node > > > involvement) on 6/10/02. I finally had my first appointment with > > an > > > endo this week and he said that I would not need RAI. His > > office > > > coordinated with my GP in early July and I was put on cytomel 7 > > weeks > > > ago and had an isolation room scheduled for 9/11, so this took > > me by > > > surprise. Needless to say I was very relieved and took a > > synthroid > > > pill asap. But, now that I've had a few days to think about it, > I'm > > > wondering if it's the right decision. Not that he gave me a > > > decision, he just said, " we will not be doing RAI, but will > follow > > up > > > with ultrasounds and blood tests " (the first baseline ultrasound > > in > > > Feb. 04). This endo only sees thyroid cancer patients, so I felt > > > that I would be comfortable with his treatment plan, but now I'm > > not > > > so sure. Any advice? For anyone out there that did not have > > RAI, did > > > you have a choice and how are you being monitored? > > > Teri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2003 Report Share Posted August 21, 2003 > From what I hear, it's the doctor's call to do or not to do the RAI > depending on your situation. People need to also keep in mind that it may be the doctor's call, but it is not the doctor's body. I feel very strongly that educating yourself about your thyca is important, rather than just relying on " my doctor said so " . If someone is comfortable with the doctor's decision about RAI (or anything else), fine. If not, ask questions, tell the doctor what your concerns are, and if necessary, look for another endo Cheers, Alisa Currently - TSH 0.02, 140mcg Levoxyl 2/15/2002: Nodule found 2/27/2002: FNA 3/4/2002: Hysterectomy/oopherectomy-possible ovarian cancer - BENIGN!! 4/9/2002: TT - Stage 2 pap 2.5 x 2 x 1.6 cm nodule, dx Hashimotos 5/28/2002: 100 mCi RAI 12/16/02: WBS (5 mCi): clean scan - no thyroid tissue in body!!! Age: 49 -- Location: near Seattle WA --- Check out my posts: Radioactive Girl - http://groups.yahoo.com/group/Thyca/message/19472 My LID - http://groups.yahoo.com/group/Thyca/message/15872 My RAI - http://groups.yahoo.com/group/Thyca/message/15873 LID stuff - http://groups.yahoo.com/group/Thyca/message/25430 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2003 Report Share Posted August 21, 2003 In a message dated 8/21/03 5:01:52 PM Eastern Daylight Time, bjones44@... writes: > What good is the Tg test if you haven't had RAI? > From what I understand, it shows that any tissue is supressed. If I get a rise in TG while supressed, then we worry. Lin in Pa. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2003 Report Share Posted August 21, 2003 Subject: Re: Anyone not have RAI? > Bloodwork is done 4x a year unless I have a change > in meds so it's usually more than 4x. > I get a TG test every time. > What good is the Tg test if you haven't had RAI? bj Quote Link to comment Share on other sites More sharing options...
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