Guest guest Posted January 3, 2003 Report Share Posted January 3, 2003 Hi Cher, I had my TT back in 1990 and similarly wrestled with the decision. I was supposed to have a PT - no one thought I had cancer. For me personally, I decided that I'd rather get rid of the growth than to " watch and wait " - I didn't want to always have that worry in the back of my mind that there was something bad growing inside me, and my gut instincts just kept telling me to get the surgery. Anway, for me it was the right decision because when they opened me up it turned out that it was cancer and that it had already started to spread. I woke up from my surgery to find out that I had thyca and that my PT had turned into a TT - needless to say, I have never regretted my decision!! Only you can make the right choice that's best for you, but I can tell you that as far as quality of life, I had my TT 12 years ago, and I can assure you that there is definately life after thyca!!! - Gayle North Salem, NY TT 1990 RAI (125) 3/15/02 Next Scan: 3/2003 On Fri, 03 Jan 2003 17:34:26 -0000 " Cheryl A. Baker " wrote: > I have decided that IF I have the surgery, I will have it in land > where I reside with my daughter, instead of here in IL where I am > originally from and have all the rest of my family -- since I do not > look or act sick, this family doesn't seem to realize the importance > of having support from friends and family. > > My question to all of you is: If you had the choice would you go > through this surgery again? Are you living a life of quality or is > it an every day struggle? It sounds by the post that it is an > everlasting hassle after the surgery and expensive!! > > Has anyone in here had their thyroid removed and found that there was > no cancer there?? I have not been diagnosed with it; reports say > there is a 'possibility' it may be cancerous. Isn't there a new > blood test out that can say whether or not you have cancer in your > body -- it doesn't tell you where the cancer is at, but at least one > would be pretty much sure the thyroid was cancerous. > > My concerns are: > > I am on a limited income -- social security and a partial > retirement. The only insurance I have is Medicare; no other > insurance will accept me because of pre-existing conditions. > Medicare does not pay for the first $700 of hospital stay and they > don't pay for meds. I am already paying out $500 a month for meds, > plus a $7 fee every time I see a doctor; there is no way I can afford > the $700 and more medications. > > Another thing that I wonder about is: Is this surgery really worth > it? Do I want to live a life of running back and forth to doctors > and hospitals for all of these scans and blood work. I am not afraid > of the surgery at all; but am afraid of the after effects and the > quality of life I will be living. > > And, of course, there is the upcoming " War " -- surgeons are on > strike; we may be nuked any day now or be victims of bio-chemical > warfare. So with that in mind, will it be a waste of time and money > to have this done? > > My mind has been on a merry-go-round ever since I saw the ENT -- > should I or shouldn't I have the surgery; where should I have it; how > will I make all of the appointments? > > Maybe by reading your answers to my questions, it will help me sort > things out a bit. > > Thank you. > > Cher > > > This e-mail support group is one of many free services of ThyCa: > Thyroid Cancer Survivors' Association, Inc. <web site: > www.thyca.org>. If you do not wish to belong to this group, you may > UNSUBSCRIBE by > sending a blank e-mail to: > thyca-unsubscribe > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2003 Report Share Posted January 3, 2003 Hi Cher, I had my TT back in 1990 and similarly wrestled with the decision. I was supposed to have a PT - no one thought I had cancer. For me personally, I decided that I'd rather get rid of the growth than to " watch and wait " - I didn't want to always have that worry in the back of my mind that there was something bad growing inside me, and my gut instincts just kept telling me to get the surgery. Anway, for me it was the right decision because when they opened me up it turned out that it was cancer and that it had already started to spread. I woke up from my surgery to find out that I had thyca and that my PT had turned into a TT - needless to say, I have never regretted my decision!! Only you can make the right choice that's best for you, but I can tell you that as far as quality of life, I had my TT 12 years ago, and I can assure you that there is definately life after thyca!!! - Gayle North Salem, NY TT 1990 RAI (125) 3/15/02 Next Scan: 3/2003 On Fri, 03 Jan 2003 17:34:26 -0000 " Cheryl A. Baker " wrote: > I have decided that IF I have the surgery, I will have it in land > where I reside with my daughter, instead of here in IL where I am > originally from and have all the rest of my family -- since I do not > look or act sick, this family doesn't seem to realize the importance > of having support from friends and family. > > My question to all of you is: If you had the choice would you go > through this surgery again? Are you living a life of quality or is > it an every day struggle? It sounds by the post that it is an > everlasting hassle after the surgery and expensive!! > > Has anyone in here had their thyroid removed and found that there was > no cancer there?? I have not been diagnosed with it; reports say > there is a 'possibility' it may be cancerous. Isn't there a new > blood test out that can say whether or not you have cancer in your > body -- it doesn't tell you where the cancer is at, but at least one > would be pretty much sure the thyroid was cancerous. > > My concerns are: > > I am on a limited income -- social security and a partial > retirement. The only insurance I have is Medicare; no other > insurance will accept me because of pre-existing conditions. > Medicare does not pay for the first $700 of hospital stay and they > don't pay for meds. I am already paying out $500 a month for meds, > plus a $7 fee every time I see a doctor; there is no way I can afford > the $700 and more medications. > > Another thing that I wonder about is: Is this surgery really worth > it? Do I want to live a life of running back and forth to doctors > and hospitals for all of these scans and blood work. I am not afraid > of the surgery at all; but am afraid of the after effects and the > quality of life I will be living. > > And, of course, there is the upcoming " War " -- surgeons are on > strike; we may be nuked any day now or be victims of bio-chemical > warfare. So with that in mind, will it be a waste of time and money > to have this done? > > My mind has been on a merry-go-round ever since I saw the ENT -- > should I or shouldn't I have the surgery; where should I have it; how > will I make all of the appointments? > > Maybe by reading your answers to my questions, it will help me sort > things out a bit. > > Thank you. > > Cher > > > This e-mail support group is one of many free services of ThyCa: > Thyroid Cancer Survivors' Association, Inc. <web site: > www.thyca.org>. If you do not wish to belong to this group, you may > UNSUBSCRIBE by > sending a blank e-mail to: > thyca-unsubscribe > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2003 Report Share Posted January 3, 2003 Cher, Sorry to be blunt, but I'd rather have a life of ocassionally " running " back and forth to the doctor than to have a cancer growing inside my body and infesting my body, for the remainder of my life here. As far as the co-pay, I am sure they can put you on some type of monthly payment plan. As far as I am aware, all major hospitals offer them, so you are not hit with it all at once. They can work something out for you. Yeah, in the very begining, when everything is moving so fast, from surgery to RAI to meds and getting them where they should be, for a good couple of months it is a pain, in my opinion. But I am reaching that place now that and Alisa talked to me about before, when I was first diagnosed. That place where you wake up each day and you want to start the day and get out of bed (well, okay, maybe most days, not all of 'em). Where you feel like a " person " again, your weight stabilizes again, you're suppressed or on your way there, and everything seems to just calm down and fall into place. Of course, whether you have thyca or not, everyone still has their bad days. But more and more, you will eventually, after everything settles down, find that sense of peace and stability again. Best Wishes in your decision, 5-02 FNA 6-02 Core Biopsy Dx pap cancer 7-10-02 TT 7-29-02 RAI 156 mCi Current .175 Synthroid Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2003 Report Share Posted January 3, 2003 Hi Cheryl, I understand the real anxiety and indecision you are feeling. Before my surgery I also felt the same way. I guess for me it was that I didn't really want to believe what was happening. Luckily, for what it's worth, thyroid cancer does have a very good outcome, so if this is the diagnosis you end up with, it is not a death sentence. > My question to all of you is: If you had the choice would you go > through this surgery again? I went into my surgery thinking I was going to have a PT. I woke up to find out I had a TT because of what the surgeon found in there. So, yes!! I would go through it again because otherwise the cancer would have eventually killed me. > Are you living a life of quality or is it an every day struggle? > It sounds by the post that it is an everlasting hassle after > the surgery and expensive!! My surgery was in Oct 2000, and my life was completely back to normal within a few months. For other perspectives on this question, scroll back in the list of messages and read all the ones called " Posiitve Outcomes " from about two days ago. > Isn't there a new blood test out that can say whether > or not you have cancer in your body -- it doesn't tell you > where the cancer is at, but at least one > would be pretty much sure the thyroid was cancerous. I don't know about this blood test, but maybe someone else has? What I've always heard is that the only definitive diagnosis comes from a pathologist looking at your thyroid under a microscope. Even many thyroid biopsies are later proven wrong, because only a post-surgery exam can say for sure. > ...<snip> > And, of course, there is the upcoming " War " -- surgeons > are on strike; we may be nuked any day now or be victims > of bio-chemical warfare. So with that in mind, will it be a > waste of time and money to have this done? My feeling is that any one of us could get hit by a bus tomorrow or come down with some other illness or who knows what else. It sure would be a waste of all the money I've spent at the gym, LOL! But I guess I go to the gym because it makes me feel good and I'm planning to live long and going to the gym will pay off over the long haul. Unfortunately in life there are no guarantees. We never have all the information we need to make a perfect decision, and that's the part I hate!! :-) All we can do is try to make the decisions that feel right to us with the information we have at the time. I suspect that your thoughts of a possible war or terrorist strike are your mind's way of distracting you from the more tangible threat at hand....or of maybe offering you a perverse salvation from what you see as a worse fate. If you do go through with the surgery, though, you will see that you will get through it. There will be rough spots and tough days, especially in the beginning, but you'll get lots of support and information and tips from everyone here. Things will be okay, really! We are all made of tougher stuff than we think. Best wishes to you, --Carmen in nyc 10/00 TT, papillary 11/00 RAI 100 mCi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2003 Report Share Posted January 3, 2003 > My question to all of you is: If you had the choice would you go > through this surgery again? In a heartbeat. Thyca is nothing to mess with. Yes, it's generally a treatable cancer, and yes, it is slow growing, but it CAN turn deadly. > Are you living a life of quality or is it an every day struggle? I've had some times where it's a struggle, but I'm still living a life of quality. But I'm still very new in the scheme of things - my surgery was only about 9 months ago. > It sounds by the post that it is an > everlasting hassle after the surgery and expensive!! Well, there IS some hassle with any medical condition. Keep in mind that most people writing here are ones who are currently going through treatments or having problems. > > Has anyone in here had their thyroid removed and found that there > was no cancer there?? I have not been diagnosed with it; reports > say there is a 'possibility' it may be cancerous. Did you have an ultrasound? An FNA? Did it say " possible " or " probable " ? > Isn't there a new blood test out that can say whether or not you > have cancer in your body -- it doesn't tell you where the cancer is > at, but at least one would be pretty much sure the thyroid was > cancerous. Not that I know of. And if it wouldn't tell you WHERE the cancer is, how helpful is it? > My concerns are: > > I am on a limited income -- social security and a partial > retirement. The only insurance I have is Medicare; no other > insurance will accept me because of pre-existing conditions. > Medicare does not pay for the first $700 of hospital stay and they > don't pay for meds. I am already paying out $500 a month for meds, > plus a $7 fee every time I see a doctor; there is no way I can > afford the $700 and more medications. I can imagine how frustrating and difficult this is. Have you talked to the insurance commissioner in your state? Perhaps they can help. There are others here in similar situations, hopefully they'll write in with other suggestions. > Another thing that I wonder about is: Is this surgery really worth > it? Do I want to live a life of running back and forth to doctors > and hospitals for all of these scans and blood work. I am not > afraid of the surgery at all; but am afraid of the after effects and > the quality of life I will be living. I can't answer this for you - this is a decision YOU have to make, but I didn't want to risk having the thyca that may now be treatable morph into something deadly later on. > And, of course, there is the upcoming " War " -- surgeons are on > strike; we may be nuked any day now or be victims of bio-chemical > warfare. So with that in mind, will it be a waste of time and money > to have this done? Well, you could be hit by a car tomorrow and killed, too. As scary as all these world events are, don't stop living your life because of something that MAY happen. > My mind has been on a merry-go-round ever since I saw the ENT -- > should I or shouldn't I have the surgery; where should I have it; > how will I make all of the appointments? > > Maybe by reading your answers to my questions, it will help me sort > things out a bit. I know it's a big mouthful to swallow. Cheers, Alisa Currently - 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: WBS (2 mCi) and 100 mCi RAI --- 6/6/2002: WBS - No mets 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 thoughts, tips, ideas - http://groups.yahoo.com/group/Thyca/message/25430 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 --- In Thyca , " Cheryl A. Baker <thatsthewayloveis0101@y...> " > > My question to all of you is: If you had the choice would you go > through this surgery again? absolutely, in a heartbeat. It wasn't that bad a surgery for me, and it sure beats thinking each day that there's a cancer growing in my neck. Are you living a life of quality or is > it an every day struggle? my life is quality, no doubt about it.. check into my earlier post about positive outcomes. Sure I take a pill everyday, but I've had asthma for over 40 years and i've always had to take meds, so its one more pill. And a few doctor's visits a year. The first year was annoying, LID, hypo, RAI -- that whole 9 yards.. but after that its really been no big deal. I'm as active as i ever was, probably more. It sounds by the post that it is an > everlasting hassle after the surgery and expensive!! > > Has anyone in here had their thyroid removed and found that there was > no cancer there?? I have not been diagnosed with it; reports say > there is a 'possibility' it may be cancerous. Isn't there a new > blood test out that can say whether or not you have cancer in your > body -- it doesn't tell you where the cancer is at, but at least one > would be pretty much sure the thyroid was cancerous. for thyroid cancer, the FNA is usually used as the diagnostic tool, aspiration of the nodule with a needle and studying the contents to see if its cancer, its not 100% accurate. We have had a few people on the list go thru the surgery and find out it wasn't cancer, it doesn't happen often but it does happen. > > My concerns are: > > I am on a limited income -- social security and a partial > retirement. The only insurance I have is Medicare; no other > insurance will accept me because of pre-existing conditions. > Medicare does not pay for the first $700 of hospital stay and they > don't pay for meds. I am already paying out $500 a month for meds, > plus a $7 fee every time I see a doctor; there is no way I can afford > the $700 and more medications. Levoxyl is pretty cheap, mine comes out about 8 bucks a month, which is cheaper than the insurance 10$ co-pay so i just pay for it. In terms of the hospital stay, the hospital may be able to work out a payment plan with you to spread that out over time or such. > > Another thing that I wonder about is: Is this surgery really worth > it? Do I want to live a life of running back and forth to doctors > and hospitals for all of these scans and blood work. I am not afraid > of the surgery at all; but am afraid of the after effects and the > quality of life I will be living. It hasn't been a lot of running back and forth for me. In the 3 years since my surgery i had 1 hospital trip for surgery 1 overnight at hospital for RAI 1 scan after surgery 1 scan after RAI 1 scan in dec 00 1 scan in may 02 and i'll have a scan in may of 03 then we'll go to every 2 years so it was 2 hospital trips and 4 scans in 3 years and for doctor visits i've had 6 (twice a year for 3 years) i screwed up my knee skiing and had more doctor visits for that than i have for thyroid cancer. > > And, of course, there is the upcoming " War " -- surgeons are on > strike; we may be nuked any day now or be victims of bio-chemical > warfare. So with that in mind, will it be a waste of time and money > to have this done? We might all die tommorrow in a nuclear holocaust, but I'm still going to have steak tonight for dinner.. whats the point in saving the time and money? how would i use that time and money any better if i died tommorrow? > > > Maybe by reading your answers to my questions, it will help me sort > things out a bit. > > Thank you. > > Cher Good luck Cher, I hope we can give you some insights to help you work through your decisions. barb tt 8/99 RAI 4/00 Clean Scans 12/00, 5/02 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 --- In Thyca , " Cheryl A. Baker <thatsthewayloveis0101@y...> " > > My question to all of you is: If you had the choice would you go > through this surgery again? absolutely, in a heartbeat. It wasn't that bad a surgery for me, and it sure beats thinking each day that there's a cancer growing in my neck. Are you living a life of quality or is > it an every day struggle? my life is quality, no doubt about it.. check into my earlier post about positive outcomes. Sure I take a pill everyday, but I've had asthma for over 40 years and i've always had to take meds, so its one more pill. And a few doctor's visits a year. The first year was annoying, LID, hypo, RAI -- that whole 9 yards.. but after that its really been no big deal. I'm as active as i ever was, probably more. It sounds by the post that it is an > everlasting hassle after the surgery and expensive!! > > Has anyone in here had their thyroid removed and found that there was > no cancer there?? I have not been diagnosed with it; reports say > there is a 'possibility' it may be cancerous. Isn't there a new > blood test out that can say whether or not you have cancer in your > body -- it doesn't tell you where the cancer is at, but at least one > would be pretty much sure the thyroid was cancerous. for thyroid cancer, the FNA is usually used as the diagnostic tool, aspiration of the nodule with a needle and studying the contents to see if its cancer, its not 100% accurate. We have had a few people on the list go thru the surgery and find out it wasn't cancer, it doesn't happen often but it does happen. > > My concerns are: > > I am on a limited income -- social security and a partial > retirement. The only insurance I have is Medicare; no other > insurance will accept me because of pre-existing conditions. > Medicare does not pay for the first $700 of hospital stay and they > don't pay for meds. I am already paying out $500 a month for meds, > plus a $7 fee every time I see a doctor; there is no way I can afford > the $700 and more medications. Levoxyl is pretty cheap, mine comes out about 8 bucks a month, which is cheaper than the insurance 10$ co-pay so i just pay for it. In terms of the hospital stay, the hospital may be able to work out a payment plan with you to spread that out over time or such. > > Another thing that I wonder about is: Is this surgery really worth > it? Do I want to live a life of running back and forth to doctors > and hospitals for all of these scans and blood work. I am not afraid > of the surgery at all; but am afraid of the after effects and the > quality of life I will be living. It hasn't been a lot of running back and forth for me. In the 3 years since my surgery i had 1 hospital trip for surgery 1 overnight at hospital for RAI 1 scan after surgery 1 scan after RAI 1 scan in dec 00 1 scan in may 02 and i'll have a scan in may of 03 then we'll go to every 2 years so it was 2 hospital trips and 4 scans in 3 years and for doctor visits i've had 6 (twice a year for 3 years) i screwed up my knee skiing and had more doctor visits for that than i have for thyroid cancer. > > And, of course, there is the upcoming " War " -- surgeons are on > strike; we may be nuked any day now or be victims of bio-chemical > warfare. So with that in mind, will it be a waste of time and money > to have this done? We might all die tommorrow in a nuclear holocaust, but I'm still going to have steak tonight for dinner.. whats the point in saving the time and money? how would i use that time and money any better if i died tommorrow? > > > Maybe by reading your answers to my questions, it will help me sort > things out a bit. > > Thank you. > > Cher Good luck Cher, I hope we can give you some insights to help you work through your decisions. barb tt 8/99 RAI 4/00 Clean Scans 12/00, 5/02 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 --- In Thyca , " Cheryl A. Baker <thatsthewayloveis0101@y...> " > > My question to all of you is: If you had the choice would you go > through this surgery again? absolutely, in a heartbeat. It wasn't that bad a surgery for me, and it sure beats thinking each day that there's a cancer growing in my neck. Are you living a life of quality or is > it an every day struggle? my life is quality, no doubt about it.. check into my earlier post about positive outcomes. Sure I take a pill everyday, but I've had asthma for over 40 years and i've always had to take meds, so its one more pill. And a few doctor's visits a year. The first year was annoying, LID, hypo, RAI -- that whole 9 yards.. but after that its really been no big deal. I'm as active as i ever was, probably more. It sounds by the post that it is an > everlasting hassle after the surgery and expensive!! > > Has anyone in here had their thyroid removed and found that there was > no cancer there?? I have not been diagnosed with it; reports say > there is a 'possibility' it may be cancerous. Isn't there a new > blood test out that can say whether or not you have cancer in your > body -- it doesn't tell you where the cancer is at, but at least one > would be pretty much sure the thyroid was cancerous. for thyroid cancer, the FNA is usually used as the diagnostic tool, aspiration of the nodule with a needle and studying the contents to see if its cancer, its not 100% accurate. We have had a few people on the list go thru the surgery and find out it wasn't cancer, it doesn't happen often but it does happen. > > My concerns are: > > I am on a limited income -- social security and a partial > retirement. The only insurance I have is Medicare; no other > insurance will accept me because of pre-existing conditions. > Medicare does not pay for the first $700 of hospital stay and they > don't pay for meds. I am already paying out $500 a month for meds, > plus a $7 fee every time I see a doctor; there is no way I can afford > the $700 and more medications. Levoxyl is pretty cheap, mine comes out about 8 bucks a month, which is cheaper than the insurance 10$ co-pay so i just pay for it. In terms of the hospital stay, the hospital may be able to work out a payment plan with you to spread that out over time or such. > > Another thing that I wonder about is: Is this surgery really worth > it? Do I want to live a life of running back and forth to doctors > and hospitals for all of these scans and blood work. I am not afraid > of the surgery at all; but am afraid of the after effects and the > quality of life I will be living. It hasn't been a lot of running back and forth for me. In the 3 years since my surgery i had 1 hospital trip for surgery 1 overnight at hospital for RAI 1 scan after surgery 1 scan after RAI 1 scan in dec 00 1 scan in may 02 and i'll have a scan in may of 03 then we'll go to every 2 years so it was 2 hospital trips and 4 scans in 3 years and for doctor visits i've had 6 (twice a year for 3 years) i screwed up my knee skiing and had more doctor visits for that than i have for thyroid cancer. > > And, of course, there is the upcoming " War " -- surgeons are on > strike; we may be nuked any day now or be victims of bio-chemical > warfare. So with that in mind, will it be a waste of time and money > to have this done? We might all die tommorrow in a nuclear holocaust, but I'm still going to have steak tonight for dinner.. whats the point in saving the time and money? how would i use that time and money any better if i died tommorrow? > > > Maybe by reading your answers to my questions, it will help me sort > things out a bit. > > Thank you. > > Cher Good luck Cher, I hope we can give you some insights to help you work through your decisions. barb tt 8/99 RAI 4/00 Clean Scans 12/00, 5/02 Quote Link to comment Share on other sites More sharing options...
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