Recurrent Hurthle Cell Thyroid Cancer - my story

2

Comments

  • BellsAngel69
    BellsAngel69 Member Posts: 104 Member
    wendriful said:

    how sad:(
    I feel bad for you. I don't think that endocrinologists (even good ones) have a clue. I would love to see them descend to hypo-hell just once; mine was 144 before RAI; I was given 190.2 millicuries...Before I even got home, my neck tripled in size. I had gastric bypass (2003) and feel that was a huge factor. The radiology department told me that there was no way the pills could have metabilized that fast...tell that to my body.

    YES, get a 2nd and 3rd opinion. Our bodies can only have SO much RAI; it is NOT good for us at all.

    Please keep me posted.
    Wendy

    Sugery is set
    I met with my liver surgeon and I really liked him. He looked over my history and all my films very thoroughly, including talking to me in depth. He showed me the spots in question, yes, there was more than one, which is what they initially thought. It turns out there are three spots, 2 about 2 cm each and one is a speckling of tiny spots. Luckily they are all in the left lobe of my liver. He feels he can resect about 1/4 of my liver laparoscopically, which means minimally invasive, shorter recovery time. My surgery is set for March 24th. Although very rare, metastasis to the liver is possible.

    So I have to look at the positives. They can resect my liver to get rid of the tumors laparoscopically. I will recover. The best part is he told me to go to Johns Hopkins and meet with them and get a second opinion. I was worried I would have to reshedule my appt. That was one thing that was weighing heavy on my mind. My local doctors have done the best for me so far, but I want to be a patient at Johns Hopkins in the future. I know they have clinical trials and new drugs and aren't available to me locally. I'm hoping they can find a treatment that will help keep my cancer for reocurring again.

    The weight of the world has lifted off my shoulders. Although it's still a majory surgery, at least I have a plan now. The worst part for me has been all the testing and waiting. This has been going on since November, so I've been pretty stressed the past three months.

    Now I can take a deep breathe and exhale and relax. I know I have a course of action to follow now instead of being in limbo.

    I'll keep you all updated. Thanks for all the kind words of support.

    Patti
  • loispol1
    loispol1 Member Posts: 84

    Sugery is set
    I met with my liver surgeon and I really liked him. He looked over my history and all my films very thoroughly, including talking to me in depth. He showed me the spots in question, yes, there was more than one, which is what they initially thought. It turns out there are three spots, 2 about 2 cm each and one is a speckling of tiny spots. Luckily they are all in the left lobe of my liver. He feels he can resect about 1/4 of my liver laparoscopically, which means minimally invasive, shorter recovery time. My surgery is set for March 24th. Although very rare, metastasis to the liver is possible.

    So I have to look at the positives. They can resect my liver to get rid of the tumors laparoscopically. I will recover. The best part is he told me to go to Johns Hopkins and meet with them and get a second opinion. I was worried I would have to reshedule my appt. That was one thing that was weighing heavy on my mind. My local doctors have done the best for me so far, but I want to be a patient at Johns Hopkins in the future. I know they have clinical trials and new drugs and aren't available to me locally. I'm hoping they can find a treatment that will help keep my cancer for reocurring again.

    The weight of the world has lifted off my shoulders. Although it's still a majory surgery, at least I have a plan now. The worst part for me has been all the testing and waiting. This has been going on since November, so I've been pretty stressed the past three months.

    Now I can take a deep breathe and exhale and relax. I know I have a course of action to follow now instead of being in limbo.

    I'll keep you all updated. Thanks for all the kind words of support.

    Patti

    I really hope you find the
    I really hope you find the right answers/help soon. I am thinking maybe I should go to John Hopkins to start, instead of having surgery locally. It is so hard making decisions about all of this. You have been through so much, my heart and prayers are with you. Your candid comments have helped me see clearly the seriousness of all of this. I can't figure out why Hurthle cell carcinoma is so hard to find accurate information about. Where do you find your strength? Thank you Patti for letting us know your trials and suffering. I have been waiting since the second week in December for some definite answers. Seems there won't be any coming for a very long while. There are so many "indefintes". Please keep us posted with your journey!
    Thank you for being here!
    Lois
  • Niky
    Niky Member Posts: 2

    Sugery is set
    I met with my liver surgeon and I really liked him. He looked over my history and all my films very thoroughly, including talking to me in depth. He showed me the spots in question, yes, there was more than one, which is what they initially thought. It turns out there are three spots, 2 about 2 cm each and one is a speckling of tiny spots. Luckily they are all in the left lobe of my liver. He feels he can resect about 1/4 of my liver laparoscopically, which means minimally invasive, shorter recovery time. My surgery is set for March 24th. Although very rare, metastasis to the liver is possible.

    So I have to look at the positives. They can resect my liver to get rid of the tumors laparoscopically. I will recover. The best part is he told me to go to Johns Hopkins and meet with them and get a second opinion. I was worried I would have to reshedule my appt. That was one thing that was weighing heavy on my mind. My local doctors have done the best for me so far, but I want to be a patient at Johns Hopkins in the future. I know they have clinical trials and new drugs and aren't available to me locally. I'm hoping they can find a treatment that will help keep my cancer for reocurring again.

    The weight of the world has lifted off my shoulders. Although it's still a majory surgery, at least I have a plan now. The worst part for me has been all the testing and waiting. This has been going on since November, so I've been pretty stressed the past three months.

    Now I can take a deep breathe and exhale and relax. I know I have a course of action to follow now instead of being in limbo.

    I'll keep you all updated. Thanks for all the kind words of support.

    Patti

    You go, girl!
    Hi Patti -- good to hear you have a plan. MY BEST WISHES FOR YOU. I think the idea of plugging into Johns Hopkins is a good one -- as I said in my previous post, there are a lot of new developments, new clinical trials, new treatments coming out.

    In the meantime: you have a course of action and sounds like a great surgeon.

    I've been doing tests for elevated thyroglobulin all last week, will find out the results tomorrow. I know what you mean by feeling stressed out.

    ALSO: EVERYBODY -- I'M READING A REALLY GOOD BOOK CALLED "ANTICANCER". Look it up. It's written by a doctor who had brain cancer (and recurrence) and beat it. He covers not only the conventional treatments but goes into detail on what one can do in life to prevent recurrence. It's an enjoyable read as well.

    My best to all you guys!
  • weberdns
    weberdns Member Posts: 154

    wow
    I can't believe I shared my story and no one has even looked. I came here to share and for support. Anyone?

    Sorry
    I just started on this site after being diagnosed less than 2 weeks ago. I had 2 surgeries in 8 days and I am trying to get through many of these posts! I am so sorry that this has happened to you.....and hope that you get good news, clean scans, and opinions from the doctors that can keep you going! I am so sorry that you are going through this once again....and pray that this time treatment works for you!
  • loispol1
    loispol1 Member Posts: 84

    Sugery is set
    I met with my liver surgeon and I really liked him. He looked over my history and all my films very thoroughly, including talking to me in depth. He showed me the spots in question, yes, there was more than one, which is what they initially thought. It turns out there are three spots, 2 about 2 cm each and one is a speckling of tiny spots. Luckily they are all in the left lobe of my liver. He feels he can resect about 1/4 of my liver laparoscopically, which means minimally invasive, shorter recovery time. My surgery is set for March 24th. Although very rare, metastasis to the liver is possible.

    So I have to look at the positives. They can resect my liver to get rid of the tumors laparoscopically. I will recover. The best part is he told me to go to Johns Hopkins and meet with them and get a second opinion. I was worried I would have to reshedule my appt. That was one thing that was weighing heavy on my mind. My local doctors have done the best for me so far, but I want to be a patient at Johns Hopkins in the future. I know they have clinical trials and new drugs and aren't available to me locally. I'm hoping they can find a treatment that will help keep my cancer for reocurring again.

    The weight of the world has lifted off my shoulders. Although it's still a majory surgery, at least I have a plan now. The worst part for me has been all the testing and waiting. This has been going on since November, so I've been pretty stressed the past three months.

    Now I can take a deep breathe and exhale and relax. I know I have a course of action to follow now instead of being in limbo.

    I'll keep you all updated. Thanks for all the kind words of support.

    Patti

    Hi Patti
    I spoke with Elaine and she said you made through your surgery okay? I really hope you are doing better now and I look forward to your next post here! You are an inspiration!
    Smiles,
    Lois
  • BellsAngel69
    BellsAngel69 Member Posts: 104 Member
    loispol1 said:

    Hi Patti
    I spoke with Elaine and she said you made through your surgery okay? I really hope you are doing better now and I look forward to your next post here! You are an inspiration!
    Smiles,
    Lois

    Hi All
    Well I had my surger on the 24th, and got home Monday. It took 3 1/2 hours, and they ended up taking 1/4 of my liver instead of the 1/2 that was mentioned at first, so that made me happy. The dr. looked at my liver extensively for any more tumors and didn't see any. However, he said the pathology showed about 11-12 spots compared to the 3 they had seen on the MRI. Mostly because one area had a bunch of tiny pinpoint tumors clumped together, so the original CT scan read it as one big tumor.

    It was by far the hardest surgery I've had to endure. Even though my TT was a 6 hr. surgery, besides feeling tired and not having much of a voice after, I felt pretty darn good. I know this was a major surgery, but the 2-3 days projected in the hospital was way off. I spent 5 days there, and was still very sore when I left. They did the surgery laporoscopically, with six small incisions and one larger one, so that's amazing in itself, but the dr. put the major incision where a childbirth one would be, so I pretty much feel like I just had a c-section. I felt pretty good 2 days out, probabaly because I was still numb and had pain meds, the the 3rd day was the worst. If anyone has ever had any kind of abdomenal surgery, the gas pain is the worst. I've always had problems with that in the past, and this was the worst ever. I would walk like they said, then the pain would start and I would feel short of breath like I couldn't breathe and I would panic.

    I finally turned the corner Sat. and by Sun. they let me have regular food, although hospital food is quite nasty.

    My trip to Johns Hopkins was a week before and was amazing. I felt special from the time I walked in the door until the time I left. The dr. spent an hour with me, going over my history in detail, and he concurred with the treatment I've been getting home so far. He basically told me that Hurthle Cell cancer is a rare beast, it doesn't act like other kinds of thyroid cancer, and thus is unpredictable. He said the reason why doctors say thryroid cancer is one of the better kinds to get is because it is usually very treatable, even with a reocurrence, and you can live with it, because it is slow growing and can be tracked well.

    He wants to see me in a year, and asked to have all my results and procedures forwarded to him so he can follow my case.

    Besides JHH being amazing, I was fortunate enough to meet Elaine, whom I met here on this board, and was there for her three month visit. My husband and I and she and her husband had an amazing dinner and chat. We are definitely sisters in this fight. We also saw each other the next day at the hospital.

    I'm hoping and praying this is the end of my reocurrences if not forever, for a very long time. After 2 in a three year span, I need a break. I need to be free of this for my sanity. I just wish I could wake up one day and say I'm free of this forever, but I know that will probably never happen. It could go into remission for years, which would be nice. I need to breathe.

    I thank you all for your kind words of support.

    Hugs, Patti
  • loispol1
    loispol1 Member Posts: 84

    Hi All
    Well I had my surger on the 24th, and got home Monday. It took 3 1/2 hours, and they ended up taking 1/4 of my liver instead of the 1/2 that was mentioned at first, so that made me happy. The dr. looked at my liver extensively for any more tumors and didn't see any. However, he said the pathology showed about 11-12 spots compared to the 3 they had seen on the MRI. Mostly because one area had a bunch of tiny pinpoint tumors clumped together, so the original CT scan read it as one big tumor.

    It was by far the hardest surgery I've had to endure. Even though my TT was a 6 hr. surgery, besides feeling tired and not having much of a voice after, I felt pretty darn good. I know this was a major surgery, but the 2-3 days projected in the hospital was way off. I spent 5 days there, and was still very sore when I left. They did the surgery laporoscopically, with six small incisions and one larger one, so that's amazing in itself, but the dr. put the major incision where a childbirth one would be, so I pretty much feel like I just had a c-section. I felt pretty good 2 days out, probabaly because I was still numb and had pain meds, the the 3rd day was the worst. If anyone has ever had any kind of abdomenal surgery, the gas pain is the worst. I've always had problems with that in the past, and this was the worst ever. I would walk like they said, then the pain would start and I would feel short of breath like I couldn't breathe and I would panic.

    I finally turned the corner Sat. and by Sun. they let me have regular food, although hospital food is quite nasty.

    My trip to Johns Hopkins was a week before and was amazing. I felt special from the time I walked in the door until the time I left. The dr. spent an hour with me, going over my history in detail, and he concurred with the treatment I've been getting home so far. He basically told me that Hurthle Cell cancer is a rare beast, it doesn't act like other kinds of thyroid cancer, and thus is unpredictable. He said the reason why doctors say thryroid cancer is one of the better kinds to get is because it is usually very treatable, even with a reocurrence, and you can live with it, because it is slow growing and can be tracked well.

    He wants to see me in a year, and asked to have all my results and procedures forwarded to him so he can follow my case.

    Besides JHH being amazing, I was fortunate enough to meet Elaine, whom I met here on this board, and was there for her three month visit. My husband and I and she and her husband had an amazing dinner and chat. We are definitely sisters in this fight. We also saw each other the next day at the hospital.

    I'm hoping and praying this is the end of my reocurrences if not forever, for a very long time. After 2 in a three year span, I need a break. I need to be free of this for my sanity. I just wish I could wake up one day and say I'm free of this forever, but I know that will probably never happen. It could go into remission for years, which would be nice. I need to breathe.

    I thank you all for your kind words of support.

    Hugs, Patti

    Hi Patti
    So very glad to see your message! I am also glad you are doing better now, sounds like it was rough. I had endoscopic abdominal surgery for ovarian cysts, where they injected
    air or is it gas into the abdomen. I remember it hurting a lot. Your surgery of course was probably much more involved. It is wonderful you were able to hook up with Elaine while at JH!
    I really hope you get the break you are praying for, you deserve it! Who did you see at JH?
    My TT is scheduled for next Friday, I have the feeling my allergies are not being taken seriously by the anesthsia staff, I may have to postpone or cancel until someone listens to me about this.

    Well, take good care and hope you continue to feel much better everyday!

    Lois
  • weberdns
    weberdns Member Posts: 154
    Thank you for your story...and your honesty
    Was diagnosed on March 10th with Hurthle Cell. Thyroid surgeries on 3/4 and 3/12 and having RI starting with the test shot on 4/26.....treatment dosage on 4/29
  • sfl67
    sfl67 Member Posts: 55

    Hi All
    Well I had my surger on the 24th, and got home Monday. It took 3 1/2 hours, and they ended up taking 1/4 of my liver instead of the 1/2 that was mentioned at first, so that made me happy. The dr. looked at my liver extensively for any more tumors and didn't see any. However, he said the pathology showed about 11-12 spots compared to the 3 they had seen on the MRI. Mostly because one area had a bunch of tiny pinpoint tumors clumped together, so the original CT scan read it as one big tumor.

    It was by far the hardest surgery I've had to endure. Even though my TT was a 6 hr. surgery, besides feeling tired and not having much of a voice after, I felt pretty darn good. I know this was a major surgery, but the 2-3 days projected in the hospital was way off. I spent 5 days there, and was still very sore when I left. They did the surgery laporoscopically, with six small incisions and one larger one, so that's amazing in itself, but the dr. put the major incision where a childbirth one would be, so I pretty much feel like I just had a c-section. I felt pretty good 2 days out, probabaly because I was still numb and had pain meds, the the 3rd day was the worst. If anyone has ever had any kind of abdomenal surgery, the gas pain is the worst. I've always had problems with that in the past, and this was the worst ever. I would walk like they said, then the pain would start and I would feel short of breath like I couldn't breathe and I would panic.

    I finally turned the corner Sat. and by Sun. they let me have regular food, although hospital food is quite nasty.

    My trip to Johns Hopkins was a week before and was amazing. I felt special from the time I walked in the door until the time I left. The dr. spent an hour with me, going over my history in detail, and he concurred with the treatment I've been getting home so far. He basically told me that Hurthle Cell cancer is a rare beast, it doesn't act like other kinds of thyroid cancer, and thus is unpredictable. He said the reason why doctors say thryroid cancer is one of the better kinds to get is because it is usually very treatable, even with a reocurrence, and you can live with it, because it is slow growing and can be tracked well.

    He wants to see me in a year, and asked to have all my results and procedures forwarded to him so he can follow my case.

    Besides JHH being amazing, I was fortunate enough to meet Elaine, whom I met here on this board, and was there for her three month visit. My husband and I and she and her husband had an amazing dinner and chat. We are definitely sisters in this fight. We also saw each other the next day at the hospital.

    I'm hoping and praying this is the end of my reocurrences if not forever, for a very long time. After 2 in a three year span, I need a break. I need to be free of this for my sanity. I just wish I could wake up one day and say I'm free of this forever, but I know that will probably never happen. It could go into remission for years, which would be nice. I need to breathe.

    I thank you all for your kind words of support.

    Hugs, Patti

    Surgery
    Hi Patti,

    Am so glad to hear from you and learn you are home and hopefully recovering quickly and completely. You continue to be in my thoughts.

    Shelia
  • sfl67
    sfl67 Member Posts: 55
    weberdns said:

    Thank you for your story...and your honesty
    Was diagnosed on March 10th with Hurthle Cell. Thyroid surgeries on 3/4 and 3/12 and having RI starting with the test shot on 4/26.....treatment dosage on 4/29

    Best Wishes
    weberdns,

    I wish you well with your upcoming treatments. Stay positive and try to not become discouraged with all of this at once. You will continue to be in my thoughts as you go forward.

    Shelia
  • weberdns
    weberdns Member Posts: 154
    sfl67 said:

    Best Wishes
    weberdns,

    I wish you well with your upcoming treatments. Stay positive and try to not become discouraged with all of this at once. You will continue to be in my thoughts as you go forward.

    Shelia

    Thanks Sheila!
    Some days are good, some days are bad. I now have my RI scheduled to start the 26'th of April with a test shot, body scan, and then the full dose starting on the 29'th. Right now I'm so anxious and scared at the same time to find out for sure if any mets show up on the scan and get a better idea where I stand right now! With 2 kids....age 14 and 19 I'm terrified that I won't live to see them grow up, so I fight thisi thing inside of me....telling it that I am not going to die! I have too many people who depend on me, I fight on!! One doctor was totally negative about my diagnosis and treatment, while another one feels that things will go well. I'm sticking with her! My pastor says one day at a time....but some days....especially on the tough days it's so hard. Thanks for the prayers and the good thoughts! I feel like I can never have too many of those at this stage of the game!

    Hope that you are feeling better after your surgery and are up and around living your life as soon as you can!
  • BellsAngel69
    BellsAngel69 Member Posts: 104 Member
    tonesgurl said:

    Hey BellsAngel69,
    I asked

    Hey BellsAngel69,

    I asked him why he keeps increasing my Levo and he said because my TSH is still too high so the higher dose of meds will (or should) bring my numbers down so I am not Hypo anymore. My hair is still falling out, ALOT, I am tired, frustrated, grouchy, emotional,ect..

    I understand how you must feel wiped out and all the accompaniments.....Just be happy you didnt have to go off the meds, that proved to be really difficult for me. Imagine how you feel now but ten times worse, that should be close to how it is when you're off the meds.

    Let me know what happens with your PET scan. I have never had one of those, what's it for?

    Had PET and total body scan
    for recurrent hurthel cell cancer. My Tg have been elevated for the past three years. It had metastisized to my right hip. I had surgery to remove the dime-sized lesion, and thought I was past it. However, my Tg level keeps rising, and has gone from 15 post surgery, to 29, and when I had my last blood test in November, it was 130. That is extremely high and usually indicates a reoccurance.

    So, my docs ordered a PET scan, and a RAI low-dose full body scan so they can compare to see what shows.

    Well, my PET showed something very unusual. A spot on the inner curve of my stomach. Now I'm no expert by any means, but I've done enough reseach to know that it is unheard of for HCC to go to the stomach. However, my doctors are thinking in might be a cluster of lymph nodes either behind or attached to my stomach. Certain sites are good hosts for thyroid cells to attach and grow, usually the bones, lungs and lymph nodes, but as far as my doctor knows, he's never heard of it going to the stomach. My scans were clean otherwise.

    So, now I find myself in this scary situation. If it isn't HCC, then it could be something worse, like stomach cancer. I don't want to be negative, but there is definitely something there, they just don't know what it is. My doctors are hoping that it is HCC, because if it isn't then they have no idea why my TSH is so high, and I will have another issue to deal with on top of elevated TSH and no known source.

    I admit, I freaked out, totally lost it. I wasn't expecting to hear there was something in my stomach.

    Now I have to have a CT scan of my stomach, and an endoscopy. Hopefully between both, they can figure out what it is.

    I'm a little better now, but I'm still a little scared. I'll know in about two weeks what they find. My CT scan is the 22nd and my endo is Feb. 2nd.

    Until then, I'm living on the edge.
  • BellsAngel69
    BellsAngel69 Member Posts: 104 Member
    weberdns said:

    Thanks Sheila!
    Some days are good, some days are bad. I now have my RI scheduled to start the 26'th of April with a test shot, body scan, and then the full dose starting on the 29'th. Right now I'm so anxious and scared at the same time to find out for sure if any mets show up on the scan and get a better idea where I stand right now! With 2 kids....age 14 and 19 I'm terrified that I won't live to see them grow up, so I fight thisi thing inside of me....telling it that I am not going to die! I have too many people who depend on me, I fight on!! One doctor was totally negative about my diagnosis and treatment, while another one feels that things will go well. I'm sticking with her! My pastor says one day at a time....but some days....especially on the tough days it's so hard. Thanks for the prayers and the good thoughts! I feel like I can never have too many of those at this stage of the game!

    Hope that you are feeling better after your surgery and are up and around living your life as soon as you can!

    Thanks everyone
    I'm still recovering, getting better every day. The hardest part is I'm not the type that likes sitting around or being limited, especially when it comes exercising. I'm walking or riding a bike every day. I tried to do some weights, light ones, and so far so good, but I'm gonna stick to the walking and riding for a while. I tried a new machine at my gym and it was really stiff. I'm still sore from it.

    All we can do is stay positive. Truthfully, I used to breeze in and out of my endocrinologists office and never twice about my blood tests. Now I'm tentative and on pins and needles until my blood tests come back, which usually takes three weeks. And just when I think I'm home free I get the call my TG is elevated again. I hope and pray this time it's knocked way down. They told me my TG may never be under 1 again with two reocurrences. They could be wrong. I hope so. That's all I can do.
  • loispol1
    loispol1 Member Posts: 84

    Thanks everyone
    I'm still recovering, getting better every day. The hardest part is I'm not the type that likes sitting around or being limited, especially when it comes exercising. I'm walking or riding a bike every day. I tried to do some weights, light ones, and so far so good, but I'm gonna stick to the walking and riding for a while. I tried a new machine at my gym and it was really stiff. I'm still sore from it.

    All we can do is stay positive. Truthfully, I used to breeze in and out of my endocrinologists office and never twice about my blood tests. Now I'm tentative and on pins and needles until my blood tests come back, which usually takes three weeks. And just when I think I'm home free I get the call my TG is elevated again. I hope and pray this time it's knocked way down. They told me my TG may never be under 1 again with two reocurrences. They could be wrong. I hope so. That's all I can do.

    Hi Patti
    How are you doing ? Feeling any better now? I really hope so. You are an inspiration to all of us here, you maintain such a positive spirit, which can only serve to heal and help others! I am glad you are here sharing your story. You are in my prayers as well as the other people here. I hope they are wrong about your TG blood tests, but, hey you have been through so much and you seem to be doing well in spite of it! I keep thinking that if my situation turns out to be malignant, I have read your messages and imagined what you have been through. If I have to, I can do it also. Since I have a role model for what I might need to go through in the future, Hurthle cell "whatever" is very much less scary to me. Thanks for keeping your post up and I hope today was a good one for you! With what you have been through, one little 'ol TT seems simple by comparison! Smiles, Lois
  • BellsAngel69
    BellsAngel69 Member Posts: 104 Member
    loispol1 said:

    Hi Patti
    How are you doing ? Feeling any better now? I really hope so. You are an inspiration to all of us here, you maintain such a positive spirit, which can only serve to heal and help others! I am glad you are here sharing your story. You are in my prayers as well as the other people here. I hope they are wrong about your TG blood tests, but, hey you have been through so much and you seem to be doing well in spite of it! I keep thinking that if my situation turns out to be malignant, I have read your messages and imagined what you have been through. If I have to, I can do it also. Since I have a role model for what I might need to go through in the future, Hurthle cell "whatever" is very much less scary to me. Thanks for keeping your post up and I hope today was a good one for you! With what you have been through, one little 'ol TT seems simple by comparison! Smiles, Lois

    Hi Lois
    I hope you're getting the help you need. If I remember correctly, you haven't even had your thyroid out yet. I hope they've diagnosed you and have a course of action set. Having a TT for thyroid cancer is the best way to get things under control.

    Thanks for the compliments on me being a role model. I can't say I have all the answers, I just try to stay in control and handle the situation at hand. I have my good days and bad days, and I try to stay on an even keel with my emotions. All any of us can do is try to stay positive and believe we can get through whatever challenges are presented us.

    We have to stay strong and carry on!
  • loispol1
    loispol1 Member Posts: 84

    Hi Lois
    I hope you're getting the help you need. If I remember correctly, you haven't even had your thyroid out yet. I hope they've diagnosed you and have a course of action set. Having a TT for thyroid cancer is the best way to get things under control.

    Thanks for the compliments on me being a role model. I can't say I have all the answers, I just try to stay in control and handle the situation at hand. I have my good days and bad days, and I try to stay on an even keel with my emotions. All any of us can do is try to stay positive and believe we can get through whatever challenges are presented us.

    We have to stay strong and carry on!

    You are inspiring as ever!
    I am feeling somewhat optimistic again. My MRA for possible blood clot is over and I am moving closer to surgery. I have seen all of my medical specialists now and I feel confident I will get through this. I didn't have the anesthesia testing help I desired but somehow I just don't have it in me to try to pursue that route any further, I really do want the surgery behind me now. Yes, about the TT, I can't even imagine taking the right lobe and isthmus and leaving over four other nodules behind in the left lobe? What for? I hope my surgeon looks at everything and takes what he needs as far as lymph nodes go. I can't figure out the ATA recommendation now is on that?

    Are you feeling better? It has to have been a longer recovery period? I saw at the thyca discussion group someone else was going to Dr. Ball at Hopkins, did I remember this correctly? I am so glad you got there and are receivng the treatment you need! Meeting Elaine had to be a very positive experience also! Smiles and thank for the response. With having had all of this thyroid mess since 1993, I can't help thinking something isn't right in there. Hey, wouldn't it be great if they took out my thyroid and found that it was causing all of my allergies?(wishful thinking)! At least I will know what is going on! Take care, Lois
  • weberdns
    weberdns Member Posts: 154
    loispol1 said:

    You are inspiring as ever!
    I am feeling somewhat optimistic again. My MRA for possible blood clot is over and I am moving closer to surgery. I have seen all of my medical specialists now and I feel confident I will get through this. I didn't have the anesthesia testing help I desired but somehow I just don't have it in me to try to pursue that route any further, I really do want the surgery behind me now. Yes, about the TT, I can't even imagine taking the right lobe and isthmus and leaving over four other nodules behind in the left lobe? What for? I hope my surgeon looks at everything and takes what he needs as far as lymph nodes go. I can't figure out the ATA recommendation now is on that?

    Are you feeling better? It has to have been a longer recovery period? I saw at the thyca discussion group someone else was going to Dr. Ball at Hopkins, did I remember this correctly? I am so glad you got there and are receivng the treatment you need! Meeting Elaine had to be a very positive experience also! Smiles and thank for the response. With having had all of this thyroid mess since 1993, I can't help thinking something isn't right in there. Hey, wouldn't it be great if they took out my thyroid and found that it was causing all of my allergies?(wishful thinking)! At least I will know what is going on! Take care, Lois

    Glad you are feeling better,
    getting answers and moving on!! Good luck and keep us updated!
  • loispol1
    loispol1 Member Posts: 84
    weberdns said:

    Glad you are feeling better,
    getting answers and moving on!! Good luck and keep us updated!

    How are you doing? I'm so sick of medical stuff!
    Looked for a post from you but haven'teen any since Monday. Ihope all is going well? I have doc app't today. I am so sick of waiting to get this over. Yesterday had a simple (what should have been simple) blood draw for blood tests (whole battery of thyroid, Vit D level and liver, chloseterol & A1c). There was a new supervisor in the lab that took everyone before me although I was there first. Then she couldn't read my doctor handwriting, had to call his office, finally I told them I was going to have to leave as I didn't feel well (fed up with medical stuff and fasting). Long story short, they terrorized me -first tech reused a vein she just had drawn blood drawn from. I have a blood clotting disorder and that clotted right up of course & was extremely painful. She was annoyed at my latex allergy and request for a butterfly. She then started banging things around and developed an attitutude, got the supervisor who told me she was going to draw my blood but she was going to use a huge regular needle. I re-explained that I have vasculitis, small veins that roll and a clotting disorder and it would be too painful for me & my doctor told me to always request a butterfly. She then threatened to use my hand. I really had enough at that point. I had already tried to leave twice, but they told me not to go, finally another tech came in and used a new butterfly in my other arm, and got all the blood she needed with one stick. It seems they were more upset about the cost of using new non-latex materials and butterflys than my comfort or safety. Oh the supervisor also took her unwashed finger and touched the open vein that had just been unsuccesfully opened without any glove or handwashing! This ordeal took over three hours! They probably didn't even do all the tests my doctor ordered! I am so very sick of all the medical stuff..especially when I have experiences like these. Guess it was a bad day yesterday!
  • weberdns
    weberdns Member Posts: 154
    loispol1 said:

    How are you doing? I'm so sick of medical stuff!
    Looked for a post from you but haven'teen any since Monday. Ihope all is going well? I have doc app't today. I am so sick of waiting to get this over. Yesterday had a simple (what should have been simple) blood draw for blood tests (whole battery of thyroid, Vit D level and liver, chloseterol & A1c). There was a new supervisor in the lab that took everyone before me although I was there first. Then she couldn't read my doctor handwriting, had to call his office, finally I told them I was going to have to leave as I didn't feel well (fed up with medical stuff and fasting). Long story short, they terrorized me -first tech reused a vein she just had drawn blood drawn from. I have a blood clotting disorder and that clotted right up of course & was extremely painful. She was annoyed at my latex allergy and request for a butterfly. She then started banging things around and developed an attitutude, got the supervisor who told me she was going to draw my blood but she was going to use a huge regular needle. I re-explained that I have vasculitis, small veins that roll and a clotting disorder and it would be too painful for me & my doctor told me to always request a butterfly. She then threatened to use my hand. I really had enough at that point. I had already tried to leave twice, but they told me not to go, finally another tech came in and used a new butterfly in my other arm, and got all the blood she needed with one stick. It seems they were more upset about the cost of using new non-latex materials and butterflys than my comfort or safety. Oh the supervisor also took her unwashed finger and touched the open vein that had just been unsuccesfully opened without any glove or handwashing! This ordeal took over three hours! They probably didn't even do all the tests my doctor ordered! I am so very sick of all the medical stuff..especially when I have experiences like these. Guess it was a bad day yesterday!

    Have had such wonderful friends calll
    Got lots of calls from friends during the 2 days of isolation wtih my scan does. The days just flew by. Yesterday spent the day with my hubby, daughter and doggy as it was ok to be around people and hug!

    Make sure to send a letter of complaint to the facility as well as your insurance company! No patient should be treated like this! Hey things can only go up right?!?!?
  • loispol1
    loispol1 Member Posts: 84
    weberdns said:

    Have had such wonderful friends calll
    Got lots of calls from friends during the 2 days of isolation wtih my scan does. The days just flew by. Yesterday spent the day with my hubby, daughter and doggy as it was ok to be around people and hug!

    Make sure to send a letter of complaint to the facility as well as your insurance company! No patient should be treated like this! Hey things can only go up right?!?!?

    Hi
    I did call and found out they held up my thyroid tests for two days as they seemed to need to call my doctors office over and over. I am thinking they were trying to illimate some of my tests. I also worry that holding the blood and not sending it immediately for testing could cause incorrect results. When I complained I was told they were going to call the lab where I went and tell the personel there I complained. It does absolutely no good to complain here in Florida. It is take it or leave it and i am so sick of it. Also, my tests are not back yet because they held them up. I may take this matter to the highest level, if it is even worth it, I really do not have the energy for this.

    On a more positive note you only had 2 days of isolation? Wasn't it going to be longer than that? I am really confused by all of this. You sound like you are doing very well, any side effects so far? I truly hope not and you are on the way to total recovery now!