Guest guest Posted August 18, 2003 Report Share Posted August 18, 2003 My 13 years old daughter has dg. pap. thyca, meta lgl. sin. Surgery done on August 11. On September she will have RAI. CT as well as US did not show anything but bigger lymf node left in neck. Doctors assured me that everything is ok, only some cystic form to be eliminated. After ph, firstly they were very surprised, and lately said that it is possible. Week after they did complete extirpation of th. node as well as billateral disection of the neck, and said that now everything will be ok. In node there was change 8x5x3mm!!! I was so much shocked, and still I am not possible to believe in this, but I started to search for everything around. This site that I found is something that appeared as a kind of comfort and help. I would kindly ask anyone with similar age children problem to send me any information, experience, anything that could help. My daughter feels good, she is little bit nervous last two days, but, I believe that it is also because she knows that she has CA (doctors told her, but they told her that now she will be ok with one tablet daily). What we can expect in next period? How to behave? Many thanks in advance Regards Ana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2003 Report Share Posted August 18, 2003 Dear Ana, Welcome to the group. This must be even more difficult for you than it is for your daughter. A lot of members will write in with their experiences, but mostly you can expect your daughter to become increasingly more tired and " brain fogged " , as her natural hormone supplies are depleted. The RAI treatment itself is not painful, although she will probably have some sensation along her scar. Please remain subscribed to this group, which has a lot of members and a lot of information to share; there is also a pediatric group which will certainly have the added benefit of having members who are going through what you are - parents of children with thyroid cancer. You can subscribe at http://groups.yahoo.com/group/Ped_thyca/join?referer=1. Do you know if your daughter's CT was done with contrast? It probably was, and there is a good chance that the iodine in the contrast may interfere with the RAI; it may make sense to wait a few months while the contrast leaves her system. You can read more about this at http://groups.yahoo.com/group/Thyca/message/35442 Also, did the doctors recommend that your daughter follow a low iodine diet for the weeks before the RAI treatment? Not all doctors do, but it something that we can do for ourselves, that is likely to enhance the effectiveness of the treatment. (see http://groups.yahoo.com/group/Thyca/message/17493 ) You may also want to see the http://groups.yahoo.com/group/Thyca/message/35514 which has archived indexes arranged by subject. Where do you live? We have members in many countries, including Spain, Mexico and Argentina. Best wishes to you and your daughter, and please ask any questions that you are wondering about. New York City gifing wrote: > My 13 years old daughter has dg. pap. thyca, meta lgl. sin. > Surgery done on August 11. On September she will have RAI. > > CT as well as US did not show anything but bigger lymf node left in > neck. Doctors assured me that everything is ok, only some cystic form > to be eliminated. > After ph, firstly they were very surprised, and lately said that it > is possible. Week after they did complete extirpation of th. node as > well as billateral disection of the neck, and said that now > everything will be ok. > In node there was change 8x5x3mm!!! > > I was so much shocked, and still I am not possible to believe in > this, but I started to search for everything around. > > This site that I found is something that appeared as a kind of > comfort and help. > > I would kindly ask anyone with similar age children problem to send > me any information, experience, anything that could help. > > My daughter feels good, she is little bit nervous last two days, but, > I believe that it is also because she knows that she has CA (doctors > told her, but they told her that now she will be ok with one tablet > daily). > What we can expect in next period? > How to behave? > > Many thanks in advance > Regards > Ana > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2003 Report Share Posted August 18, 2003 HI ANA: LIKE YOUR DAUGHTER, I'M PAPILLARY TOO.GOT SURGERY AND TWO RAI;I'M 25 YEARS OLD.AT FIRST I WAS REALLY SCARED AND I HAD A GREY VISION FO IT.BUT SINCE THIS START I'VE BEEN FEELING BETTER AND BETTER AND IT WON'T BE EASY,BUT LET ME SAY THAT EVERYTHING WILL BE OK.SOUNDS SIMPLE,I KNOW. MY MOTHER WAS REALLY UPSET FOR MEAND WE ARE VERY FAR AWAY.BUT SHE IS WHIT ME. THE POINT IS BE STRONG FOR BOTH AND TRUST;THIS IS HARD BUT SHE'LL BE OK,LIKE DOCTORS SAID. I HOPE YOU FOUND SOME HELP HERE AND CAN FIGURED OUT THAT HERE IS PEOPLE DEALING WHIT THIS SUCCESSFULLY. GOD BLESS YOU AND YOUR DAUGHTER. IT'LL BE OK.... MARI gifing gifing@...> wrote: My 13 years old daughter has dg. pap. thyca, meta lgl. sin. Surgery done on August 11. On September she will have RAI. CT as well as US did not show anything but bigger lymf node left in neck. Doctors assured me that everything is ok, only some cystic form to be eliminated. After ph, firstly they were very surprised, and lately said that it is possible. Week after they did complete extirpation of th. node as well as billateral disection of the neck, and said that now everything will be ok. In node there was change 8x5x3mm!!! I was so much shocked, and still I am not possible to believe in this, but I started to search for everything around. This site that I found is something that appeared as a kind of comfort and help. I would kindly ask anyone with similar age children problem to send me any information, experience, anything that could help. My daughter feels good, she is little bit nervous last two days, but, I believe that it is also because she knows that she has CA (doctors told her, but they told her that now she will be ok with one tablet daily). What we can expect in next period? How to behave? Many thanks in advance Regards Ana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2003 Report Share Posted August 19, 2003 Hello Ana, I think it's more difficult for a parent/spouse to handle than for the patient; as I noticed with my husband worrying about me, when I wasn't worried about me. Much that can help is for you and your daughter to learn what you can and read about others experiences (all of ours a slightly different). Here's mine regarding my RAI treatments... I'm 39 and I've had 2 RAI treatments (4/2001 and 5/2002) and both were very smiliar. Each time, I was given a small dose of RAI and then a scan to measure uptake (how much I absorbed) -- then docs could determine/calculate how much I'd need for a treatment (larger) dose. I have had RAI pills both times, but some hospitals administer as liquid. After my treatment dose, I had 48 hours of restrictions: stay 3-feet away from people, use separate toilet/sink/bed. Needed to sleep separate from my husband for 17 days. Had to wash my clothes, bed sheets, and food utensils separately. All precautions necessary so that I would not harm anyone's healthy thyroid with the RAI now in my body and coming out of my body. Docs will give you details on what they order for your daughter based on amount of RAI used. Also, I lost my ability to taste much of anything after my RAI and this remained for nearly 4 weeks, before my taste buds returned to normal. I followed the Low Iodine Diet (LID) for 10 days prior to my treatments (my docs recommended this) which was a significant (and good) change for me as I was used to eating at restaurants and processed foods for many of my meals. While off my meds (4+ weeks prior to treatment) I was becoming hypo and my sypmtoms were sensitive to cold, slightly puffy in face, slight weight gain (4-6 pounds), very dry hair, some mental confusion that made me not as sharp on the job, but I still went to work each day. This may seem like a lot of difficulty, but my view as a patient was that " You do what you have to do " . We don't chose the cancer, but we can chose to be a good patient to help ourselves through it with a postitive attitude. My prayers to you and your daughter, Gwynne in Michigan > > > My 13 years old daughter has dg. pap. thyca, meta lgl. sin. > Surgery done on August 11. On September she will have RAI. > > CT as well as US did not show anything but bigger lymf node left in > neck. Doctors assured me that everything is ok, only some cystic form > to be eliminated. > After ph, firstly they were very surprised, and lately said that it > is possible. Week after they did complete extirpation of th. node as > well as billateral disection of the neck, and said that now > everything will be ok. > In node there was change 8x5x3mm!!! > > > I was so much shocked, and still I am not possible to believe in > this, but I started to search for everything around. > > This site that I found is something that appeared as a kind of > comfort and help. > > I would kindly ask anyone with similar age children problem to send > me any information, experience, anything that could help. > > My daughter feels good, she is little bit nervous last two days, but, > I believe that it is also because she knows that she has CA (doctors > told her, but they told her that now she will be ok with one tablet > daily). > What we can expect in next period? > How to behave? > > Many thanks in advance > Regards > Ana Quote Link to comment Share on other sites More sharing options...
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