ok4now
03-23-2004, 11:52 AM
I had surgery to remove the tumor on 3/5. My doctor said that the tumor was minimally invasive, 2.5 cm, and confined to the thyroid. She said that I will need RAI and should expect to spend a couple of nights in the hospital. They gave me a copy of my lab report and on it, it also states that the tumor had focal capsular vascular invasion. My doctor did not mention this to me when she was explaining what I should do. I guess my question is: Has anyone had RAI for this cancer, and could they tell me what I can expect. Also, will the RAI destroy the cells that may be in my bloodstream. Does anyone know what focal capular vascular invasion is? Vasular means the bloodstream I think. I can't find anything on focal capular. Thanks for listening and any advice or information you can give me.
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hilery79
03-23-2004, 02:20 PM
I had surgery to remove the tumor on 3/5. My doctor said that the tumor was minimally invasive, 2.5 cm, and confined to the thyroid. She said that I will need RAI and should expect to spend a couple of nights in the hospital. They gave me a copy of my lab report and on it, it also states that the tumor had focal capsular vascular invasion. My doctor did not mention this to me when she was explaining what I should do. I guess my question is: Has anyone had RAI for this cancer, and could they tell me what I can expect. Also, will the RAI destroy the cells that may be in my bloodstream. Does anyone know what focal capular vascular invasion is? Vasular means the bloodstream I think. I can't find anything on focal capular. Thanks for listening and any advice or information you can give me.
Hi,
I had the EXACT same diagnosis last July. I had a 2.2cm nodule that turned out to be minimally invasive follicular thyroid cancer with capsular invasion and points of vascular invasion. I had my thyroid removed in July, followed by RAI in August. Overall, the Radioactive Iodine treatment wasn't bad at all. You will have a scan a day or 2 after you take the RAI to see if the cancer has spread. In my case, there was still a lot of uptake in my thyroid bed area but it didn't spread anywhere else. No matter where thyroid cancer spreads, the RAI will kill it. Thyroid cancer is like no other cancer and is very, very curable. My Radiation Oncologist told me sometimes it might take a couple treatments, but he had never had a patient who the RAI treatment didn't work for.
Let me know if you have any more questions. I know how scary it is to go through all of this. I would also recommend you post on the thyroid board-there are a lot of others who have gone through different types of thyroid cancer on there, too. Go to the board and do a search on follicular cancer and you should find a lot of info on it.
Take care, Hilery
Hi,
I had the EXACT same diagnosis last July. I had a 2.2cm nodule that turned out to be minimally invasive follicular thyroid cancer with capsular invasion and points of vascular invasion. I had my thyroid removed in July, followed by RAI in August. Overall, the Radioactive Iodine treatment wasn't bad at all. You will have a scan a day or 2 after you take the RAI to see if the cancer has spread. In my case, there was still a lot of uptake in my thyroid bed area but it didn't spread anywhere else. No matter where thyroid cancer spreads, the RAI will kill it. Thyroid cancer is like no other cancer and is very, very curable. My Radiation Oncologist told me sometimes it might take a couple treatments, but he had never had a patient who the RAI treatment didn't work for.
Let me know if you have any more questions. I know how scary it is to go through all of this. I would also recommend you post on the thyroid board-there are a lot of others who have gone through different types of thyroid cancer on there, too. Go to the board and do a search on follicular cancer and you should find a lot of info on it.
Take care, Hilery
ok4now
03-23-2004, 02:31 PM
Hi,
I had the EXACT same diagnosis last July. I had a 2.2cm nodule that turned out to be minimally invasive follicular thyroid cancer with capsular invasion and points of vascular invasion. I had my thyroid removed in July, followed by RAI in August. Overall, the Radioactive Iodine treatment wasn't bad at all. You will have a scan a day or 2 after you take the RAI to see if the cancer has spread. In my case, there was still a lot of uptake in my thyroid bed area but it didn't spread anywhere else. No matter where thyroid cancer spreads, the RAI will kill it. Thyroid cancer is like no other cancer and is very, very curable. My Radiation Oncologist told me sometimes it might take a couple treatments, but he had never had a patient who the RAI treatment didn't work for.
Let me know if you have any more questions. I know how scary it is to go through all of this. I would also recommend you post on the thyroid board-there are a lot of others who have gone through different types of thyroid cancer on there, too. Go to the board and do a search on follicular cancer and you should find a lot of info on it.
Take care, Hilery
Hi Hilery,
Thank you so much for your answer....I think just knowing someone else has experienced the same thing makes me feel that I am not alone, and that I will get through all of this as you have.
I do have a question for you....you mentioned "uptake in the thyroid bed area" ...what does that mean? When I have the scan it will show if the cancer has spread? What happens if it has spread? Will the RAI destroy everything that may have spread? Sorry for so many questions....this has happened so fast that I can't seem to find the information fast enough to make me feel better.
(I did post on the thyroid board as well, thanks for the tip)
Thanks again, Claudia
I had the EXACT same diagnosis last July. I had a 2.2cm nodule that turned out to be minimally invasive follicular thyroid cancer with capsular invasion and points of vascular invasion. I had my thyroid removed in July, followed by RAI in August. Overall, the Radioactive Iodine treatment wasn't bad at all. You will have a scan a day or 2 after you take the RAI to see if the cancer has spread. In my case, there was still a lot of uptake in my thyroid bed area but it didn't spread anywhere else. No matter where thyroid cancer spreads, the RAI will kill it. Thyroid cancer is like no other cancer and is very, very curable. My Radiation Oncologist told me sometimes it might take a couple treatments, but he had never had a patient who the RAI treatment didn't work for.
Let me know if you have any more questions. I know how scary it is to go through all of this. I would also recommend you post on the thyroid board-there are a lot of others who have gone through different types of thyroid cancer on there, too. Go to the board and do a search on follicular cancer and you should find a lot of info on it.
Take care, Hilery
Hi Hilery,
Thank you so much for your answer....I think just knowing someone else has experienced the same thing makes me feel that I am not alone, and that I will get through all of this as you have.
I do have a question for you....you mentioned "uptake in the thyroid bed area" ...what does that mean? When I have the scan it will show if the cancer has spread? What happens if it has spread? Will the RAI destroy everything that may have spread? Sorry for so many questions....this has happened so fast that I can't seem to find the information fast enough to make me feel better.
(I did post on the thyroid board as well, thanks for the tip)
Thanks again, Claudia
hilery79
03-23-2004, 02:33 PM
I just wanted to add one more thing. You asked about capsular invasion-this just means that the cancer invaded through the capsule(this is what tells them that the tumor is definatly malignant rather than benign).
hilery79
03-23-2004, 02:39 PM
Hi Hilery,
Thank you so much for your answer....I think just knowing someone else has experienced the same thing makes me feel that I am not alone, and that I will get through all of this as you have.
I do have a question for you....you mentioned "uptake in the thyroid bed area" ...what does that mean? When I have the scan it will show if the cancer has spread? What happens if it has spread? Will the RAI destroy everything that may have spread? Sorry for so many questions....this has happened so fast that I can't seem to find the information fast enough to make me feel better.
(I did post on the thyroid board as well, thanks for the tip)
Thanks again, Claudia
Claudia,
I am more than happy to answer any questions you have. "Uptake in the thyroid bed area" just means that there was some thyroid tissue left after my surgery. My Dr. said there is always a little uptake in this area because it is impossible to get every piece of thyroid tissue with surgery alone. Yes, the scan will show any tiny piece of thyroid tissue in your body whether it is cancer or not. The RAI will cause it go glow on the scan. I haven't had another scan since my treatment, but I will be having one in August again to make sure I don't have any thyroid tissue left(as long as there is still thyroid tissue, there is a chance it could be cancerous or turn cancerous).
No matter where thyroid cancer spreads(lungs, bone, etc) it is still thyroid cancer. So, no matter where it is the RAI will be absorbed by it and kill it. My Dr. told me this treatment is almost 100% effective.
Hilery
Thank you so much for your answer....I think just knowing someone else has experienced the same thing makes me feel that I am not alone, and that I will get through all of this as you have.
I do have a question for you....you mentioned "uptake in the thyroid bed area" ...what does that mean? When I have the scan it will show if the cancer has spread? What happens if it has spread? Will the RAI destroy everything that may have spread? Sorry for so many questions....this has happened so fast that I can't seem to find the information fast enough to make me feel better.
(I did post on the thyroid board as well, thanks for the tip)
Thanks again, Claudia
Claudia,
I am more than happy to answer any questions you have. "Uptake in the thyroid bed area" just means that there was some thyroid tissue left after my surgery. My Dr. said there is always a little uptake in this area because it is impossible to get every piece of thyroid tissue with surgery alone. Yes, the scan will show any tiny piece of thyroid tissue in your body whether it is cancer or not. The RAI will cause it go glow on the scan. I haven't had another scan since my treatment, but I will be having one in August again to make sure I don't have any thyroid tissue left(as long as there is still thyroid tissue, there is a chance it could be cancerous or turn cancerous).
No matter where thyroid cancer spreads(lungs, bone, etc) it is still thyroid cancer. So, no matter where it is the RAI will be absorbed by it and kill it. My Dr. told me this treatment is almost 100% effective.
Hilery
hilery79
03-23-2004, 02:52 PM
Claudia,
I just wanted to give you this link. This is the thread I posted when I found out I had thyroid cancer. Some people gave me a lot of good information and I thought it might be helpful to you. :) Hilery
http://www.healthboards.com/boards/showthread.php?t=104992&page=1&pp=5&highlight=follicular+cancer
I just wanted to give you this link. This is the thread I posted when I found out I had thyroid cancer. Some people gave me a lot of good information and I thought it might be helpful to you. :) Hilery
http://www.healthboards.com/boards/showthread.php?t=104992&page=1&pp=5&highlight=follicular+cancer
ok4now
03-23-2004, 02:59 PM
Claudia,
I just wanted to give you this link. This is the thread I posted when I found out I had thyroid cancer. Some people gave me a lot of good information and I thought it might be helpful to you. :) Hilery
http://www.healthboards.com/boards/showthread.php?t=104992&page=1&pp=5&highlight=follicular+cancer
Hilery,
Thank you so very much for your time and info....I can't tell you how much better I feel with everything you have told me! thanks also for the link...I'm on my way over there right now.....thank you so much!!!!
I just wanted to give you this link. This is the thread I posted when I found out I had thyroid cancer. Some people gave me a lot of good information and I thought it might be helpful to you. :) Hilery
http://www.healthboards.com/boards/showthread.php?t=104992&page=1&pp=5&highlight=follicular+cancer
Hilery,
Thank you so very much for your time and info....I can't tell you how much better I feel with everything you have told me! thanks also for the link...I'm on my way over there right now.....thank you so much!!!!
hilery79
03-23-2004, 03:06 PM
Hilery,
Thank you so very much for your time and info....I can't tell you how much better I feel with everything you have told me! thanks also for the link...I'm on my way over there right now.....thank you so much!!!!
I just read over that thread again-I didn't realize it was 22 pages long. I know that's a lot to read, but there is a lot of good info in there. As you can tell, I had loads of questions and was very scared-but I am so thankful I had so much support to ease my fears.
Hilery
Thank you so very much for your time and info....I can't tell you how much better I feel with everything you have told me! thanks also for the link...I'm on my way over there right now.....thank you so much!!!!
I just read over that thread again-I didn't realize it was 22 pages long. I know that's a lot to read, but there is a lot of good info in there. As you can tell, I had loads of questions and was very scared-but I am so thankful I had so much support to ease my fears.
Hilery
lilvoyce7321
03-24-2004, 04:15 AM
I had the rai back in March of last year. I went to the hospital and took a pill (rai). It did not hurt. I went home and stayed away from my family for so many days. I did not experience any symptoms other than the side of my face went a bit numb and was swollen, but it did not hurt. I am a big chicken when it comes to pain! I had a dry mouth and wanted water all the time. I had no appetite. I was not depressed and enjoyed the vacation!!!! No dishes to do!! No house to clean!! Nothing to do but sleep! Watch TV and relax! Did I need a break! Worrying is so stressful, and takes up a lot of energy. I enjoyed the rest.
Each persons body is different. Maybe someone had a different experience than myself?????? All I know is I worked myself worrying about it so much....and it was not as bad as what I thought it was going to be like.
Hope my comments help you as well.
-lilvoyce
Each persons body is different. Maybe someone had a different experience than myself?????? All I know is I worked myself worrying about it so much....and it was not as bad as what I thought it was going to be like.
Hope my comments help you as well.
-lilvoyce
ok4now
03-24-2004, 06:32 AM
I had the rai back in March of last year. I went to the hospital and took a pill (rai). It did not hurt. I went home and stayed away from my family for so many days. I did not experience any symptoms other than the side of my face went a bit numb and was swollen, but it did not hurt. I am a big chicken when it comes to pain! I had a dry mouth and wanted water all the time. I had no appetite. I was not depressed and enjoyed the vacation!!!! No dishes to do!! No house to clean!! Nothing to do but sleep! Watch TV and relax! Did I need a break! Worrying is so stressful, and takes up a lot of energy. I enjoyed the rest.
Each persons body is different. Maybe someone had a different experience than myself?????? All I know is I worked myself worrying about it so much....and it was not as bad as what I thought it was going to be like.
Hope my comments help you as well.
-lilvoyce
Hi lilvoyce,
Thanks for sharing your story with me. As you said, worrying is so stressful. I am not sure if it is the worry or my symptons that are making me so tired, probably a combination of both. The doctor told me I would be hospitalized for atleast 2 nights, and as much as I hate to admit it I am also looking forward to the time alone to just get a break from life. The RAI doesn't sound too terrible.....I think it is the idea of having that in your body that is pretty scary....One thing I hope happens to me is the loss of appetite....I have gained weight over the past several months and it would be nice to loose a couple of pounds. Your comments did help me and I thank you for taking the time to help me through this. Claudia
Each persons body is different. Maybe someone had a different experience than myself?????? All I know is I worked myself worrying about it so much....and it was not as bad as what I thought it was going to be like.
Hope my comments help you as well.
-lilvoyce
Hi lilvoyce,
Thanks for sharing your story with me. As you said, worrying is so stressful. I am not sure if it is the worry or my symptons that are making me so tired, probably a combination of both. The doctor told me I would be hospitalized for atleast 2 nights, and as much as I hate to admit it I am also looking forward to the time alone to just get a break from life. The RAI doesn't sound too terrible.....I think it is the idea of having that in your body that is pretty scary....One thing I hope happens to me is the loss of appetite....I have gained weight over the past several months and it would be nice to loose a couple of pounds. Your comments did help me and I thank you for taking the time to help me through this. Claudia
catsblueeyes1
05-14-2004, 03:47 PM
Hello,
I was hoping that you could answer some questions for me, I will be having a needle biopsey next week and I am totally embarassed to say that I am a big chicken. I have symptoms indicative of thyroid cancer and will find out in a week. I was hoping that you could share your symptoms with me and let me know if there is any secrets to easing my stress with regard to this procedure. It is ironic for our family because last year my husband went through base of tongue (scramous cell carcinoma) he is doing great thank God but know I have this to deal with. I am usually the most positive person but The symptoms I have beed having the past few months are getting worse
and I finally changed Doctors this week and she is wonderful! I am already scheduled
for CT scans and the biopsey, The other Doctor thought I was having menpause problems. It goes to show you that we know our bodies and need to be proactive with
our symptoms. any advice would be greatly appreciated.
debbie
I was hoping that you could answer some questions for me, I will be having a needle biopsey next week and I am totally embarassed to say that I am a big chicken. I have symptoms indicative of thyroid cancer and will find out in a week. I was hoping that you could share your symptoms with me and let me know if there is any secrets to easing my stress with regard to this procedure. It is ironic for our family because last year my husband went through base of tongue (scramous cell carcinoma) he is doing great thank God but know I have this to deal with. I am usually the most positive person but The symptoms I have beed having the past few months are getting worse
and I finally changed Doctors this week and she is wonderful! I am already scheduled
for CT scans and the biopsey, The other Doctor thought I was having menpause problems. It goes to show you that we know our bodies and need to be proactive with
our symptoms. any advice would be greatly appreciated.
debbie
ok4now
05-14-2004, 04:11 PM
Hi Debbie,
As far an my symptoms go...I had noticed that I seemed to need to clear my throat more often, I seemed to be horse a lot of the time, and when I swallowed it felt like there was something stuck in my throat. Sometimes this lump in my throat felt like it was stopping my food from going down....really strange sensation.
The FNA is relatively painless. The endo had me hyperextend my neck and then wiped down the area with some antheseptic and sprayed on something to numb the area. He did take 4 different samples explaining that he wanted to cover every area of the growth. The first 2 were easy, the 3rd and 4th were a bit more difficult for me because the doctor was manipulating the growth to make sure he got samples from every area, and I was getting a little sore in the area. I was sore for a few days after and also had a mild earache.....but Advil did help relieve the discomfort. As far as dealing with the stress of it....I really didn't know what was going to be done at my first visit. The endo examined me and told me that I would need a FNA and that he would make an appointment for me.....then the nurse told him that his next patient had cancelled, so he offered to do it right then! Next thing I know he is explaining what we needed to do, why and how.....and then I was lying down on the table having it done! Really had no time to even think about it...it was all over in about 15-20 minutes. My advice for some stress relief would be to read as much information as you can about the procedure, talk with friends and family about what you are going through, and possibly having someone come with you the day of the procedure. Best of luck....Claudia
As far an my symptoms go...I had noticed that I seemed to need to clear my throat more often, I seemed to be horse a lot of the time, and when I swallowed it felt like there was something stuck in my throat. Sometimes this lump in my throat felt like it was stopping my food from going down....really strange sensation.
The FNA is relatively painless. The endo had me hyperextend my neck and then wiped down the area with some antheseptic and sprayed on something to numb the area. He did take 4 different samples explaining that he wanted to cover every area of the growth. The first 2 were easy, the 3rd and 4th were a bit more difficult for me because the doctor was manipulating the growth to make sure he got samples from every area, and I was getting a little sore in the area. I was sore for a few days after and also had a mild earache.....but Advil did help relieve the discomfort. As far as dealing with the stress of it....I really didn't know what was going to be done at my first visit. The endo examined me and told me that I would need a FNA and that he would make an appointment for me.....then the nurse told him that his next patient had cancelled, so he offered to do it right then! Next thing I know he is explaining what we needed to do, why and how.....and then I was lying down on the table having it done! Really had no time to even think about it...it was all over in about 15-20 minutes. My advice for some stress relief would be to read as much information as you can about the procedure, talk with friends and family about what you are going through, and possibly having someone come with you the day of the procedure. Best of luck....Claudia
catsblueeyes1
05-14-2004, 04:40 PM
Thanks Claudia, I also feel like something is stuck in my throat and a thickness on the left side of my neck. I also had a tick in my eye for a few weeks but that disappeared. I am dry and seem to clear my throat more often. I also have been exrtremely fatigued. Well, thank you for your kind words and if you hear a very loud scream next friday you will know how much of a baby I really am.
Debbie
Debbie
catsblueeyes1
05-26-2004, 10:48 AM
Dear Claudia,
I am going in this Friday for my biopsy, I wanted to ask if you had any strange sensations
while drinking cold liquids? This seems to be a problem of mine, I can swallow the drink but it is difficult. The left side of my neck is also slightly larger then the right and I am consistintly coughing expecially at night when I am asleep. Thanks for taking the time to answer these questions.
Debbie
I am going in this Friday for my biopsy, I wanted to ask if you had any strange sensations
while drinking cold liquids? This seems to be a problem of mine, I can swallow the drink but it is difficult. The left side of my neck is also slightly larger then the right and I am consistintly coughing expecially at night when I am asleep. Thanks for taking the time to answer these questions.
Debbie
ok4now
05-26-2004, 12:44 PM
Hi Debbie,
I have noticed with cold liquids and cold foods, like ice cream, sorbet and ice pops it makes my throat get a tight squeezing sensation that makes me cough. I am finding that I am also choking on liquids....seems like I can't "cut off my airway" to swallow and it feels like it is going down the "wrong way". I haven't noticed any thing on my neck...looks pretty much the same on either side. I haven't noticed any coughing at night that is waking me up, but my husband said that I have started to snore!!! good luck on Friday....keep me posted on how everything goes. Claudia
I have noticed with cold liquids and cold foods, like ice cream, sorbet and ice pops it makes my throat get a tight squeezing sensation that makes me cough. I am finding that I am also choking on liquids....seems like I can't "cut off my airway" to swallow and it feels like it is going down the "wrong way". I haven't noticed any thing on my neck...looks pretty much the same on either side. I haven't noticed any coughing at night that is waking me up, but my husband said that I have started to snore!!! good luck on Friday....keep me posted on how everything goes. Claudia
Jillybeans
06-06-2004, 09:45 PM
Hello, I had my thyroid removed last month (May '04). I had the FNA after I found a lump in my neck. I too had trouble sleeping, the lump would press into my throat. I think the coughing was due to saliva not being able to fully pass the lump when lying on the pillow. In any case, my FNA was "inconclusive" meaning the pathologist was not able to make a clear distinction of the cells. I then had 1/2 of my thyroid removed, there was a large 6x4 mm nodule which turned out to be pappilary/follicular cancer. Four days later the other half of my thyroid was removed. There was also a cancer in that side, but only 1mm in size. I will be getting RAI tracer next week then the full dose staying in the hospital for 2 days the following week. I have learned what the earlier poster stated, that this type of cancer is 100% treatable. Thyroid cells are special in that they are the only cells in the body that "suck up" iodine. Therefore, when the medicine is given to you in iodine, only thyroid cells will take it in. This is different from other treatments, like types of chemotherapy, which may affect *all* the cells in your body.
After the thyroid removal (if you need it), your body will go into hypothyroid. You may have no energy and be somewhat depressed. This is normal. After the RAI treatment the doctor should put you on a thyroid replacement hormone to bring you back to normal. For now that is what I am looking forward to. :) Also, a benefit I've discovered from the surgery is that my previous asthma appears to have disappeared! I wish you all the best of luck and health.
After the thyroid removal (if you need it), your body will go into hypothyroid. You may have no energy and be somewhat depressed. This is normal. After the RAI treatment the doctor should put you on a thyroid replacement hormone to bring you back to normal. For now that is what I am looking forward to. :) Also, a benefit I've discovered from the surgery is that my previous asthma appears to have disappeared! I wish you all the best of luck and health.