Guest guest Posted October 4, 2002 Report Share Posted October 4, 2002 Hi Kim, Welcome to the group. I am sorry you are here, but glad that you found us. This is a wonderful group-everyone has been very supportive and informative. Before I found this group I felt very isolated, but now I have the strength and hope to go forward, one day at a time. You are so right in that finding an A list doctor is very critical. I had an operative hysteroscopy in July. The doctor was not on the A list. The scarring has reformed. As soon as I came home from my hsg I made an appointment on Oct.18 with an A list doctor. Good luck with your recovery! Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2002 Report Share Posted October 5, 2002 Hi , I just saw Corinna's reply to your post. I had/have a moderate case of AS. I was treated outside of my home state by an A-list doc. However, I the doctor who originally diagnosed me via hysteroscopy apparently did end up in the wrong place as Corinna indicated. He believed that my uterus was totally fused and that I would not carry a child with my uterus. Turns out that all of my scarring was at the bottom of my uterus. My cervix was scarred over as well. My A-list doctor (Dr. Indman) did allow that this sort of error can happen. The other doctor, however, indicated that he wasn't able to get very far during the diagnostic hysteroscopy due to the scarring. He also said that he would have discovered the actual extent of my scarring during the operative procedure (which I chose not to let him do as he had limited AS experience). That your doctor says he's not seen AS in 15 years is reason enough to seek out a more experienced doctor to treat you. Again, sounds like Corinna gave you good advice on that front. Good luck! I wish you the best!! J. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2002 Report Share Posted October 5, 2002 Hi , I just saw Corinna's reply to your post. I had/have a moderate case of AS. I was treated outside of my home state by an A-list doc. However, I the doctor who originally diagnosed me via hysteroscopy apparently did end up in the wrong place as Corinna indicated. He believed that my uterus was totally fused and that I would not carry a child with my uterus. Turns out that all of my scarring was at the bottom of my uterus. My cervix was scarred over as well. My A-list doctor (Dr. Indman) did allow that this sort of error can happen. The other doctor, however, indicated that he wasn't able to get very far during the diagnostic hysteroscopy due to the scarring. He also said that he would have discovered the actual extent of my scarring during the operative procedure (which I chose not to let him do as he had limited AS experience). That your doctor says he's not seen AS in 15 years is reason enough to seek out a more experienced doctor to treat you. Again, sounds like Corinna gave you good advice on that front. Good luck! I wish you the best!! J. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2002 Report Share Posted October 5, 2002 Hi , I just saw Corinna's reply to your post. I had/have a moderate case of AS. I was treated outside of my home state by an A-list doc. However, I the doctor who originally diagnosed me via hysteroscopy apparently did end up in the wrong place as Corinna indicated. He believed that my uterus was totally fused and that I would not carry a child with my uterus. Turns out that all of my scarring was at the bottom of my uterus. My cervix was scarred over as well. My A-list doctor (Dr. Indman) did allow that this sort of error can happen. The other doctor, however, indicated that he wasn't able to get very far during the diagnostic hysteroscopy due to the scarring. He also said that he would have discovered the actual extent of my scarring during the operative procedure (which I chose not to let him do as he had limited AS experience). That your doctor says he's not seen AS in 15 years is reason enough to seek out a more experienced doctor to treat you. Again, sounds like Corinna gave you good advice on that front. Good luck! I wish you the best!! J. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 Amy, First of all, welcome to the group. You have found a warm supportive group of people who are all dealing with similar issues in learning what we can do for our children and different ways to go about caring for those special needs. If your son has make it so many years without major problems, he sounds like a very intelligent boy. As far as an fm system goes, there are others here who can advise better than I can on getting that. I am blessed with being in a system which has a FANTASTIC oral deaf program and we get all the support we need from that program even though he is mainstreamed. While you have alot to deal with now that you know this, I offer one bit of advice. Find out why he is hearing impaired. I didn't know about my son's mild-severe loss until he was 5 although I knew there was a problem. I accepted his loss, followed advice of family ENT and got hearing aids for him and started working with the school on his needs. I never asked " WHY " . Eleven months later, I found he had a significant hearing drop in one ear. His type of hearing loss is progressive. I wish I had known sooner as there was a surgery we could have had done sooner that MIGHT have stopped that loss. I don't wish to cause any panic or added burden to you at all, just passing along my story and what I learned. Best of luck, again, welcome to the group, I hope you learn from everyone and feel the wonderful support I have felt. Sue Mother of (11, hearing) and (9, HOH) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 Amy, First of all, welcome to the group. You have found a warm supportive group of people who are all dealing with similar issues in learning what we can do for our children and different ways to go about caring for those special needs. If your son has make it so many years without major problems, he sounds like a very intelligent boy. As far as an fm system goes, there are others here who can advise better than I can on getting that. I am blessed with being in a system which has a FANTASTIC oral deaf program and we get all the support we need from that program even though he is mainstreamed. While you have alot to deal with now that you know this, I offer one bit of advice. Find out why he is hearing impaired. I didn't know about my son's mild-severe loss until he was 5 although I knew there was a problem. I accepted his loss, followed advice of family ENT and got hearing aids for him and started working with the school on his needs. I never asked " WHY " . Eleven months later, I found he had a significant hearing drop in one ear. His type of hearing loss is progressive. I wish I had known sooner as there was a surgery we could have had done sooner that MIGHT have stopped that loss. I don't wish to cause any panic or added burden to you at all, just passing along my story and what I learned. Best of luck, again, welcome to the group, I hope you learn from everyone and feel the wonderful support I have felt. Sue Mother of (11, hearing) and (9, HOH) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 Amy, First of all, welcome to the group. You have found a warm supportive group of people who are all dealing with similar issues in learning what we can do for our children and different ways to go about caring for those special needs. If your son has make it so many years without major problems, he sounds like a very intelligent boy. As far as an fm system goes, there are others here who can advise better than I can on getting that. I am blessed with being in a system which has a FANTASTIC oral deaf program and we get all the support we need from that program even though he is mainstreamed. While you have alot to deal with now that you know this, I offer one bit of advice. Find out why he is hearing impaired. I didn't know about my son's mild-severe loss until he was 5 although I knew there was a problem. I accepted his loss, followed advice of family ENT and got hearing aids for him and started working with the school on his needs. I never asked " WHY " . Eleven months later, I found he had a significant hearing drop in one ear. His type of hearing loss is progressive. I wish I had known sooner as there was a surgery we could have had done sooner that MIGHT have stopped that loss. I don't wish to cause any panic or added burden to you at all, just passing along my story and what I learned. Best of luck, again, welcome to the group, I hope you learn from everyone and feel the wonderful support I have felt. Sue Mother of (11, hearing) and (9, HOH) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2002 Report Share Posted November 15, 2002 Becky, I am not well versed in the technical aspects of thyroid cancer but I sure will send a hug to you and your son. In fact, many many many hugs. Hugs all around!!! Li and June New member > My name is Becky. I don't have thyroid cancer but my 16 year old son > does. He was diagnosed with Follicular cancer on 11-14. He is having > his second surgery on 12-2. Iodine radiation therapy after that. I > would like to hear from anyone who will share their experiences. This > is very scary for me as he is so young. Hopefully, someone can put > mind at ease a little bit. > Thanks to all. > Becky > > > For more information regarding thyroid cancer visit www.thyca.org. If you do not wish to belong to this group, you may UNSUBSCRIBE by sending a blank email to thyca-unsubscribe > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2002 Report Share Posted November 15, 2002 Becky, I am not well versed in the technical aspects of thyroid cancer but I sure will send a hug to you and your son. In fact, many many many hugs. Hugs all around!!! Li and June New member > My name is Becky. I don't have thyroid cancer but my 16 year old son > does. He was diagnosed with Follicular cancer on 11-14. He is having > his second surgery on 12-2. Iodine radiation therapy after that. I > would like to hear from anyone who will share their experiences. This > is very scary for me as he is so young. Hopefully, someone can put > mind at ease a little bit. > Thanks to all. > Becky > > > For more information regarding thyroid cancer visit www.thyca.org. If you do not wish to belong to this group, you may UNSUBSCRIBE by sending a blank email to thyca-unsubscribe > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2002 Report Share Posted November 15, 2002 Becky, I am not well versed in the technical aspects of thyroid cancer but I sure will send a hug to you and your son. In fact, many many many hugs. Hugs all around!!! Li and June New member > My name is Becky. I don't have thyroid cancer but my 16 year old son > does. He was diagnosed with Follicular cancer on 11-14. He is having > his second surgery on 12-2. Iodine radiation therapy after that. I > would like to hear from anyone who will share their experiences. This > is very scary for me as he is so young. Hopefully, someone can put > mind at ease a little bit. > Thanks to all. > Becky > > > For more information regarding thyroid cancer visit www.thyca.org. If you do not wish to belong to this group, you may UNSUBSCRIBE by sending a blank email to thyca-unsubscribe > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2002 Report Share Posted November 16, 2002 Hi Becky, I was diagnosed with thyroid cancer a little before my 16th birthday. As in your son's case the primary tumour was follicular. I had papillary cancer in the lymph nodes which led to a classification back then of papillary thyroid cancer (pap thyca). The treatment back then was far less thorough than it is now, and I only had radioiodine therapy 17 years later, but I am still here and healthy...37 years after I was first diagnosed! Thinking back to the time of my first diagnosis, one of the hardest parts was that no-one in my family wanted to talk about it. They treated it as if it was all over after the operation except for remembering to take my tablets for the rest of my life. I was even sent out of the room for the final five minutes or so of each consultation so that my doctors could talk privately with my parents. So my first advice to you and your son would be to involve him throughout. You say that he is " so young " , and we all want to protect our children from anything bad, but at 16 he is old enough to participate fully in all the discussions. Keeping anything back or having discussions with doctors or relatives in which he is not included will only make him suspicious and possibly a whole lot more anxious than he would be otherwise. I hope this helps, and please let us know how your son gets on. Don't hesitate to write to me off list, Good luck and best wishes, Judith (British, living in Holland) dx 1965 pap thyca (T4-N1-M0) pt Sep 1965 London, England dx2 1982 recurrence in lymph nodes tt Mar 1982 The Netherlands rai Apr 1982 Leiden, The Netherlands > My name is Becky. I don't have thyroid cancer but my 16 year old son > does. He was diagnosed with Follicular cancer on 11-14. He is having > his second surgery on 12-2. Iodine radiation therapy after that. I > would like to hear from anyone who will share their experiences. This > is very scary for me as he is so young. Hopefully, someone can put > mind at ease a little bit. > Thanks to all. > Becky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2002 Report Share Posted November 16, 2002 Judith, Thank you so much for responding to me. Your right, he is old enough to participate in every aspect of the procedures. That is probably the best advice I've received so far. He's a pretty strong kid. He's 16 going on 30. I'm glad to hear everything is OK with you. How did you cope with being Hypo before your radiation. I've read it's pretty bad. How was the radiation for you? Any before procedure advice? Reading everyone messages I've learned I need to ask a lot more questions. All the different terminology and levels are a bit confusing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2002 Report Share Posted November 16, 2002 Judith, Thank you so much for responding to me. Your right, he is old enough to participate in every aspect of the procedures. That is probably the best advice I've received so far. He's a pretty strong kid. He's 16 going on 30. I'm glad to hear everything is OK with you. How did you cope with being Hypo before your radiation. I've read it's pretty bad. How was the radiation for you? Any before procedure advice? Reading everyone messages I've learned I need to ask a lot more questions. All the different terminology and levels are a bit confusing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2002 Report Share Posted November 16, 2002 Judith, Thank you so much for responding to me. Your right, he is old enough to participate in every aspect of the procedures. That is probably the best advice I've received so far. He's a pretty strong kid. He's 16 going on 30. I'm glad to hear everything is OK with you. How did you cope with being Hypo before your radiation. I've read it's pretty bad. How was the radiation for you? Any before procedure advice? Reading everyone messages I've learned I need to ask a lot more questions. All the different terminology and levels are a bit confusing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2002 Report Share Posted November 16, 2002 Did you know that Thyca also has a pediatric email group? Get the info/link from http://www.thyca.org/email.htm Good luck to him -- and to you -- during all this. bj New member > My name is Becky. I don't have thyroid cancer but my 16 year old son > does. He was diagnosed with Follicular cancer on 11-14. He is having > his second surgery on 12-2. Iodine radiation therapy after that. I > would like to hear from anyone who will share their experiences. This > is very scary for me as he is so young. Hopefully, someone can put > mind at ease a little bit. > Thanks to all. > Becky > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2002 Report Share Posted November 16, 2002 Did you know that Thyca also has a pediatric email group? Get the info/link from http://www.thyca.org/email.htm Good luck to him -- and to you -- during all this. bj New member > My name is Becky. I don't have thyroid cancer but my 16 year old son > does. He was diagnosed with Follicular cancer on 11-14. He is having > his second surgery on 12-2. Iodine radiation therapy after that. I > would like to hear from anyone who will share their experiences. This > is very scary for me as he is so young. Hopefully, someone can put > mind at ease a little bit. > Thanks to all. > Becky > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2002 Report Share Posted November 17, 2002 I also signed up at the Pediatric site. No response there. I think the last post was Oct. 16. Thanks Becky Re: New member Did you know that Thyca also has a pediatric email group? Get the info/link from http://www.thyca.org/email.htm Good luck to him -- and to you -- during all this. bj New member > My name is Becky. I don't have thyroid cancer but my 16 year old son > does. He was diagnosed with Follicular cancer on 11-14. He is having > his second surgery on 12-2. Iodine radiation therapy after that. I > would like to hear from anyone who will share their experiences. This > is very scary for me as he is so young. Hopefully, someone can put > mind at ease a little bit. > Thanks to all. > Becky > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2002 Report Share Posted November 17, 2002 I also signed up at the Pediatric site. No response there. I think the last post was Oct. 16. Thanks Becky Re: New member Did you know that Thyca also has a pediatric email group? Get the info/link from http://www.thyca.org/email.htm Good luck to him -- and to you -- during all this. bj New member > My name is Becky. I don't have thyroid cancer but my 16 year old son > does. He was diagnosed with Follicular cancer on 11-14. He is having > his second surgery on 12-2. Iodine radiation therapy after that. I > would like to hear from anyone who will share their experiences. This > is very scary for me as he is so young. Hopefully, someone can put > mind at ease a little bit. > Thanks to all. > Becky > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2002 Report Share Posted November 17, 2002 I also signed up at the Pediatric site. No response there. I think the last post was Oct. 16. Thanks Becky Re: New member Did you know that Thyca also has a pediatric email group? Get the info/link from http://www.thyca.org/email.htm Good luck to him -- and to you -- during all this. bj New member > My name is Becky. I don't have thyroid cancer but my 16 year old son > does. He was diagnosed with Follicular cancer on 11-14. He is having > his second surgery on 12-2. Iodine radiation therapy after that. I > would like to hear from anyone who will share their experiences. This > is very scary for me as he is so young. Hopefully, someone can put > mind at ease a little bit. > Thanks to all. > Becky > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2002 Report Share Posted November 17, 2002 Sorry Becky, I missed this when you first posted it. I've given RAI to 4 teenagers, all of whom took to it easier than my older patients did. Something to do with youth? I don't know. As long as he understands that the treatment is not painful (it isn't) he should be ok. Ian > My name is Becky. I don't have thyroid cancer but my 16 year old son > does. He was diagnosed with Follicular cancer on 11-14. He is having > his second surgery on 12-2. Iodine radiation therapy after that. I > would like to hear from anyone who will share their experiences. This > is very scary for me as he is so young. Hopefully, someone can put > mind at ease a little bit. > Thanks to all. > Becky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2002 Report Share Posted November 17, 2002 Sorry Becky, I missed this when you first posted it. I've given RAI to 4 teenagers, all of whom took to it easier than my older patients did. Something to do with youth? I don't know. As long as he understands that the treatment is not painful (it isn't) he should be ok. Ian > My name is Becky. I don't have thyroid cancer but my 16 year old son > does. He was diagnosed with Follicular cancer on 11-14. He is having > his second surgery on 12-2. Iodine radiation therapy after that. I > would like to hear from anyone who will share their experiences. This > is very scary for me as he is so young. Hopefully, someone can put > mind at ease a little bit. > Thanks to all. > Becky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2002 Report Share Posted November 17, 2002 I received 157 mi c, stayed in the hospital for 3 days. After the hospital stay you are not in isolation, but you do need to take a few precautions. Use paper plates and plastic forks for a week, don't share anything for a week, etc. Stay away from women who are pregant for awhile also. At least that is what I was told two years agao when I had my I131 treatment. fred Re: New member Sorry Becky, I missed this when you first posted it. I've given RAI to 4 teenagers, all of whom took to it easier than my older patients did. Something to do with youth? I don't know. As long as he understands that the treatment is not painful (it isn't) he should be ok. Ian > My name is Becky. I don't have thyroid cancer but my 16 year old son > does. He was diagnosed with Follicular cancer on 11-14. He is having > his second surgery on 12-2. Iodine radiation therapy after that. I > would like to hear from anyone who will share their experiences. This > is very scary for me as he is so young. Hopefully, someone can put > mind at ease a little bit. > Thanks to all. > Becky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2002 Report Share Posted November 17, 2002 I received 157 mi c, stayed in the hospital for 3 days. After the hospital stay you are not in isolation, but you do need to take a few precautions. Use paper plates and plastic forks for a week, don't share anything for a week, etc. Stay away from women who are pregant for awhile also. At least that is what I was told two years agao when I had my I131 treatment. fred Re: New member Sorry Becky, I missed this when you first posted it. I've given RAI to 4 teenagers, all of whom took to it easier than my older patients did. Something to do with youth? I don't know. As long as he understands that the treatment is not painful (it isn't) he should be ok. Ian > My name is Becky. I don't have thyroid cancer but my 16 year old son > does. He was diagnosed with Follicular cancer on 11-14. He is having > his second surgery on 12-2. Iodine radiation therapy after that. I > would like to hear from anyone who will share their experiences. This > is very scary for me as he is so young. Hopefully, someone can put > mind at ease a little bit. > Thanks to all. > Becky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2002 Report Share Posted November 17, 2002 I received 157 mi c, stayed in the hospital for 3 days. After the hospital stay you are not in isolation, but you do need to take a few precautions. Use paper plates and plastic forks for a week, don't share anything for a week, etc. Stay away from women who are pregant for awhile also. At least that is what I was told two years agao when I had my I131 treatment. fred Re: New member Sorry Becky, I missed this when you first posted it. I've given RAI to 4 teenagers, all of whom took to it easier than my older patients did. Something to do with youth? I don't know. As long as he understands that the treatment is not painful (it isn't) he should be ok. Ian > My name is Becky. I don't have thyroid cancer but my 16 year old son > does. He was diagnosed with Follicular cancer on 11-14. He is having > his second surgery on 12-2. Iodine radiation therapy after that. I > would like to hear from anyone who will share their experiences. This > is very scary for me as he is so young. Hopefully, someone can put > mind at ease a little bit. > Thanks to all. > Becky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2002 Report Share Posted November 17, 2002 Ian, How long were they in isolation. I've heard you go home and stay in isolation. How awful! I've been trying to read as much as I can about the RAI because this is what scares him the most. I will let him know what you said. Thanks so much Becky Re: New member Sorry Becky, I missed this when you first posted it. I've given RAI to 4 teenagers, all of whom took to it easier than my older patients did. Something to do with youth? I don't know. As long as he understands that the treatment is not painful (it isn't) he should be ok. Ian > My name is Becky. I don't have thyroid cancer but my 16 year old son > does. He was diagnosed with Follicular cancer on 11-14. He is having > his second surgery on 12-2. Iodine radiation therapy after that. I > would like to hear from anyone who will share their experiences. This > is very scary for me as he is so young. Hopefully, someone can put > mind at ease a little bit. > Thanks to all. > Becky Quote Link to comment Share on other sites More sharing options...
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