Another Reccurence

sunnyaz
sunnyaz Member Posts: 582
edited March 2014 in Thyroid Cancer #1
I just found out that the surgeon missed a large lymph node from my last surgery in June. Changing surgeons this time. This will be my third surgery. Just not sure how I will get through this again. RAI was two months ago and now another surgery.
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Comments

  • alapah
    alapah Member Posts: 287
    #2
    one potential option
    Mayo Clinic perfoms alcohol ablations for some lymph nodes on thyroid cancer patients rather than surgery. I am not sure what criteria are used to determine if that option is appropriate for a given patient. http://www.mayoclinic.org/thyroid-cancer/treatment.html. when i seemed to have an odd node last winter they considered doing this for me (turned out it was fine and i didn't need any treatment so, unfortunately, i can't relay how it feels or how well it works). best to you - hang in there.
    e
  • sunnyaz
    sunnyaz Member Posts: 582
    #3
    alapah said:

    one potential option
    Mayo Clinic perfoms alcohol ablations for some lymph nodes on thyroid cancer patients rather than surgery. I am not sure what criteria are used to determine if that option is appropriate for a given patient. http://www.mayoclinic.org/thyroid-cancer/treatment.html. when i seemed to have an odd node last winter they considered doing this for me (turned out it was fine and i didn't need any treatment so, unfortunately, i can't relay how it feels or how well it works). best to you - hang in there.
    e

    Potential Option
    Thanks! I will ask my new surgeon what he knows about it. If it's an option I would like to consider it. I am going to the U of A Cancer Center in Tucson on the 23rd of this month to meet "the best of the best" in hopes of having at least minimally invasive surgery since this is my third. I already have a lot of scar tissue so it's going to be a more difficult process. I am trying to hang in there but it's getting tough. I thought I was done with this last November. I have had two surgeries since then and I just don't know how much more I can take.
  • alapah
    alapah Member Posts: 287
    #4
    sunnyaz said:

    Potential Option
    Thanks! I will ask my new surgeon what he knows about it. If it's an option I would like to consider it. I am going to the U of A Cancer Center in Tucson on the 23rd of this month to meet "the best of the best" in hopes of having at least minimally invasive surgery since this is my third. I already have a lot of scar tissue so it's going to be a more difficult process. I am trying to hang in there but it's getting tough. I thought I was done with this last November. I have had two surgeries since then and I just don't know how much more I can take.

    i know the feeling
    I had surgery, RAI and external radiation last year and thought I would 'cruise' for a while but have not been so fortunate. Surgery is tough though. I hope they can give you an option.
  • AliceP
    AliceP Member Posts: 32
    #5
    alapah said:

    i know the feeling
    I had surgery, RAI and external radiation last year and thought I would 'cruise' for a while but have not been so fortunate. Surgery is tough though. I hope they can give you an option.

    Hang in there
    I have had 4 surgeries for my thyroid cancer (Hurthle cell). It does get trickier with all the scar tissue. I hope you have another option, but if surgery is the answer make sure you have a great surgeon. Best of luck to you.
  • sunnyaz
    sunnyaz Member Posts: 582
    #6
    AliceP said:

    Hang in there
    I have had 4 surgeries for my thyroid cancer (Hurthle cell). It does get trickier with all the scar tissue. I hope you have another option, but if surgery is the answer make sure you have a great surgeon. Best of luck to you.

    Thanks Everyone
    I am hanging in there. Just very tired all the time. I have had many people ask me if I am going to take legal action on this. I am so exhausted I don't even want to think about it. I still can't believe the surgeon missed the Lymph node that was seen on the sonogram and biopsied back in May. He took out thirty-four nodes in June, three were cancerous and he missed the largest one that he originally went in to remove. Anyone have any thoughts on this or experience something similar? Am I just really unlucky or does this happen a lot?
  • mbelle06
    mbelle06 Member Posts: 7
    #7
    sunnyaz said:

    Thanks Everyone
    I am hanging in there. Just very tired all the time. I have had many people ask me if I am going to take legal action on this. I am so exhausted I don't even want to think about it. I still can't believe the surgeon missed the Lymph node that was seen on the sonogram and biopsied back in May. He took out thirty-four nodes in June, three were cancerous and he missed the largest one that he originally went in to remove. Anyone have any thoughts on this or experience something similar? Am I just really unlucky or does this happen a lot?

    Hi There
    I was reading your post and I'm going through a similar situation. Last October I was diagnosed with Hurhtle Cell Carcinoma and had two surgeries along with RAI. In May I had a WBS and everything came back clear. I just recently had an ultrasound on my neck, and found two masses on each side of the neck. The doctors said there is a possibility of recurrence and I'm scared out of my mind. I dont know if my surgeon paid much attention to my lymph nodes when he went in the second time. I just hope that if this cancer, that they are able to get again. I wish you the very best in your journey, and know that you are not alone. :)
  • sunnyaz
    sunnyaz Member Posts: 582
    #8
    mbelle06 said:

    Hi There
    I was reading your post and I'm going through a similar situation. Last October I was diagnosed with Hurhtle Cell Carcinoma and had two surgeries along with RAI. In May I had a WBS and everything came back clear. I just recently had an ultrasound on my neck, and found two masses on each side of the neck. The doctors said there is a possibility of recurrence and I'm scared out of my mind. I dont know if my surgeon paid much attention to my lymph nodes when he went in the second time. I just hope that if this cancer, that they are able to get again. I wish you the very best in your journey, and know that you are not alone. :)

    Hi mbelle06
    I am so sorry to hear about your recurrence. It's very strange but I have to tell you that I am intrigued by the 06 at the end of your screen name. Is there a reason you chose it? This number has been following me for years. Every time I look at a clock and everywhere I see numbers it comes up. So when I read your post of course; there it is. I have stopped trying to figure out what it means because it was driving me crazy for a while.

    Anyway, mine is a 7mm Lymph node with a few smaller nodes around it. Thankfully they are all on one side. I already have a six inch scar on the right side of my neck from my ear to the opposite side of my neck with lots of nerve damage. I am not sure if I will ever get feeling back. I just hope the scarring isn't going to be much worse after the next surgery. It's kind of unsightly. I work for a doctor and some of my patients ask, "what happened to your neck?" Most of them are elderly and it seems that some loose their scruples as they get older. My doc heard one of them ask one day and made a comment that he couldn't believe how rude people can be. I know that the scarring should be the least of my worries. Seems kind of petty, but I can't help it.

    I hope all turns out well for you. I hope you will keep me posted.

    SunnyAZ
  • mbelle06
    mbelle06 Member Posts: 7
    #9
    sunnyaz said:

    Hi mbelle06
    I am so sorry to hear about your recurrence. It's very strange but I have to tell you that I am intrigued by the 06 at the end of your screen name. Is there a reason you chose it? This number has been following me for years. Every time I look at a clock and everywhere I see numbers it comes up. So when I read your post of course; there it is. I have stopped trying to figure out what it means because it was driving me crazy for a while.

    Anyway, mine is a 7mm Lymph node with a few smaller nodes around it. Thankfully they are all on one side. I already have a six inch scar on the right side of my neck from my ear to the opposite side of my neck with lots of nerve damage. I am not sure if I will ever get feeling back. I just hope the scarring isn't going to be much worse after the next surgery. It's kind of unsightly. I work for a doctor and some of my patients ask, "what happened to your neck?" Most of them are elderly and it seems that some loose their scruples as they get older. My doc heard one of them ask one day and made a comment that he couldn't believe how rude people can be. I know that the scarring should be the least of my worries. Seems kind of petty, but I can't help it.

    I hope all turns out well for you. I hope you will keep me posted.

    SunnyAZ

    Hi SunnyAZ
    I hope you are doing well. In response to your question, the number 6 represents my birthday( which happened days ago). It's kind of funny, but that was the day that I had my second surgery(which happened to be on my birthday). My scar is the center of my neck. And it too, did not heal properly. It has been difficult putting up with people's comments and glares,but I get creative and tell people I was stabbed. lol You have to have a sense of humor when it comes to dealing with all of this.Believe it or not, prior to all of this, I did not have a single scar on my body. I remember after my first surgery I couldnt even look in front of the mirror. I would have to say that when it came close to the second surgery, is when I saw it for the first time. I remember standing in front of the mirror crying like a baby. Even to this day, it is difficult to look at my scar. I've never been a huge fan of scarves, but you better believe I have one in several colors. If you were to ask me over a year ago where my thyroid was located, I would not be able to tell you. It's funny how time has passed and now I feel like i'm an expert. I'm glad that I have followed my instincts because the team of 4 doctors that I have been working with over the past year have let me down time after time. It is stressful having to chase and put pressure on doctors just to schedule an appointment. I look forward to going to MD Anderson and getting answers.
  • veronica57
    veronica57 Member Posts: 98
    #10
    mbelle06 said:

    Hi SunnyAZ
    I hope you are doing well. In response to your question, the number 6 represents my birthday( which happened days ago). It's kind of funny, but that was the day that I had my second surgery(which happened to be on my birthday). My scar is the center of my neck. And it too, did not heal properly. It has been difficult putting up with people's comments and glares,but I get creative and tell people I was stabbed. lol You have to have a sense of humor when it comes to dealing with all of this.Believe it or not, prior to all of this, I did not have a single scar on my body. I remember after my first surgery I couldnt even look in front of the mirror. I would have to say that when it came close to the second surgery, is when I saw it for the first time. I remember standing in front of the mirror crying like a baby. Even to this day, it is difficult to look at my scar. I've never been a huge fan of scarves, but you better believe I have one in several colors. If you were to ask me over a year ago where my thyroid was located, I would not be able to tell you. It's funny how time has passed and now I feel like i'm an expert. I'm glad that I have followed my instincts because the team of 4 doctors that I have been working with over the past year have let me down time after time. It is stressful having to chase and put pressure on doctors just to schedule an appointment. I look forward to going to MD Anderson and getting answers.

    mbelle06
    I know what you mean. If you don't follow your instincts and ask questions, we wouldn't know anything. The doctors are full of it. My last appointment with my endo was in April. He hasn't made me another appointment since. My onco is treating me with Nexevar for mets to my lungs. But he doesn't check my tg levels and I'm lucky if I get an appointment with him every other month. Most of the time, I see the RN. He checks my blood work every two weeks.

    Now, the imaging center tells me that I have multiple cysts in my breast. But it's nothing to worry about. They're sending the report to my pcp and it's up to him to decide if he wants to test them to see if they're benign or cancerous. My mother had breast cancer twice, and my aunt(her sister)as well. It's worrying me. I know they're not going to call me back to let me know anything. Anytime I want to find out something, I have to keep calling them.
  • sunnyaz
    sunnyaz Member Posts: 582
    #11
    veronica57 said:

    mbelle06
    I know what you mean. If you don't follow your instincts and ask questions, we wouldn't know anything. The doctors are full of it. My last appointment with my endo was in April. He hasn't made me another appointment since. My onco is treating me with Nexevar for mets to my lungs. But he doesn't check my tg levels and I'm lucky if I get an appointment with him every other month. Most of the time, I see the RN. He checks my blood work every two weeks.

    Now, the imaging center tells me that I have multiple cysts in my breast. But it's nothing to worry about. They're sending the report to my pcp and it's up to him to decide if he wants to test them to see if they're benign or cancerous. My mother had breast cancer twice, and my aunt(her sister)as well. It's worrying me. I know they're not going to call me back to let me know anything. Anytime I want to find out something, I have to keep calling them.

    Never Stop Insisting
    It's up to us to be our own advocates. If I had not called my Endocrinologist I wouldn't know that the cancer was back. Even after he told me he had concerns about the 5 mm node not showing up in pathology, he didn't do a follow up sono. He should have done a Sono right then and there, which was about two weeks after my second surgery. Who knows when I would have figured out the cancer was back if it hadn't been for my own sixth sense and intuition. Always ask at each appointment when you will need to following up and what is the next step. Make the next appointment at check out before you leave the office. I work as an Assistant to two Physicians in a Geriatric/Family practice and I make sure my patients know when and if they are to follow up. Even if it is something as simple as a cold or bronchitis. I ask them if they have any questions before they leave and let them know that they should call me if anything worsens or they have questions after they leave. EVERY office should be doing this. The majority of the health care industry sucks!
    SunnyAZ
  • mbelle06
    mbelle06 Member Posts: 7
    #12
    sunnyaz said:

    Never Stop Insisting
    It's up to us to be our own advocates. If I had not called my Endocrinologist I wouldn't know that the cancer was back. Even after he told me he had concerns about the 5 mm node not showing up in pathology, he didn't do a follow up sono. He should have done a Sono right then and there, which was about two weeks after my second surgery. Who knows when I would have figured out the cancer was back if it hadn't been for my own sixth sense and intuition. Always ask at each appointment when you will need to following up and what is the next step. Make the next appointment at check out before you leave the office. I work as an Assistant to two Physicians in a Geriatric/Family practice and I make sure my patients know when and if they are to follow up. Even if it is something as simple as a cold or bronchitis. I ask them if they have any questions before they leave and let them know that they should call me if anything worsens or they have questions after they leave. EVERY office should be doing this. The majority of the health care industry sucks!
    SunnyAZ

    Anxiously Awaiting
    I'm here at the doctor's office awaiting results from WBS. Wish me luck!
  • sunnyaz
    sunnyaz Member Posts: 582
    #13
    mbelle06 said:

    Anxiously Awaiting
    I'm here at the doctor's office awaiting results from WBS. Wish me luck!

    Wishing you the Best!
    Hope all went well. Just saw my Oncologist this morning. Looks like I might have metastasis to the left side now as well as the right. Doing a FNA next Friday to see if it's cancer. Couldn't tell by the Sonogram. By the way, I love the pic.
    SunnyAZ
  • mbelle06
    mbelle06 Member Posts: 7
    #14
    sunnyaz said:

    Wishing you the Best!
    Hope all went well. Just saw my Oncologist this morning. Looks like I might have metastasis to the left side now as well as the right. Doing a FNA next Friday to see if it's cancer. Couldn't tell by the Sonogram. By the way, I love the pic.
    SunnyAZ

    It could be worse
    I received the news that activity was found on the right side of my neck. The doctor told me that is very likely it is cancer(again).I too have a biopsy next week to pretty much confirm that it is cancer. I've also been referred to MD Anderson because of the type of cancer that it is. I've had you in prayers and I am confident that we will get through this:)
    Marybelle
  • sunnyaz
    sunnyaz Member Posts: 582
    #15
    mbelle06 said:

    It could be worse
    I received the news that activity was found on the right side of my neck. The doctor told me that is very likely it is cancer(again).I too have a biopsy next week to pretty much confirm that it is cancer. I've also been referred to MD Anderson because of the type of cancer that it is. I've had you in prayers and I am confident that we will get through this:)
    Marybelle

    WOW!
    Hi Marybelle,
    Are we twins? This is so weird! I had such a great experience at the UMC Cancer Center. Seems like everyone who works there is so happy and helpful. I swear they were singing Zippity Do Dah out of their a__holes. I feel so blessed to have been put in their care. I have NEVER been treated so well by a Medical facility. You are in my prayers too. I am doing the Relay For Life for the American Cancer Society here in my home town on April 2nd. I am hoping to raise a lot of money for cancer research. I also agreed to let them take cells from my next surgery to use for cancer research. UMC has an awesome Cancer center. Keep me updated and have a fantastic Thanksgiving.
    SunnyAZ
    Julie
  • mbelle06
    mbelle06 Member Posts: 7
    #16
    sunnyaz said:

    WOW!
    Hi Marybelle,
    Are we twins? This is so weird! I had such a great experience at the UMC Cancer Center. Seems like everyone who works there is so happy and helpful. I swear they were singing Zippity Do Dah out of their a__holes. I feel so blessed to have been put in their care. I have NEVER been treated so well by a Medical facility. You are in my prayers too. I am doing the Relay For Life for the American Cancer Society here in my home town on April 2nd. I am hoping to raise a lot of money for cancer research. I also agreed to let them take cells from my next surgery to use for cancer research. UMC has an awesome Cancer center. Keep me updated and have a fantastic Thanksgiving.
    SunnyAZ
    Julie

    Heck of a week...
    Hi Julie,
    I hope all went well with your biopsy. I would have responded sooner but the unexpected happened;my brother died the same day I had my biopsy( in the same hospital!). Dealing with cancer is draining much less having to deal with the death of my brother.I take one day at a time hoping that he will help me get through this whole ordeal. I find out my results tomorrow from my biopsy. Wish me luck! I'll keep you in my prayers. :)


    Marybelle
  • sunnyaz
    sunnyaz Member Posts: 582
    #17
    mbelle06 said:

    Heck of a week...
    Hi Julie,
    I hope all went well with your biopsy. I would have responded sooner but the unexpected happened;my brother died the same day I had my biopsy( in the same hospital!). Dealing with cancer is draining much less having to deal with the death of my brother.I take one day at a time hoping that he will help me get through this whole ordeal. I find out my results tomorrow from my biopsy. Wish me luck! I'll keep you in my prayers. :)


    Marybelle

    Heck of a week indeed!
    Hi Marybelle,
    I am so sorry to hear about your brother. I hope he went peacefully. Was this unexpected? Did he have cancer too? This is such a difficult time for you and I wish there was something I could do to help. I will pray and pray some more.

    I hope for the best with your biopsy. I got a call from my doctor today. The left side node is negative. He only will need to deal with the right side nodes. Ten more days till my surgery. I can't believe how fast time is moving. Please let me know after you find out about your biopsy. I will check posts as soon as I get home from work tomorrow.
    God Bless,
    Julie
  • veronica57
    veronica57 Member Posts: 98
    #18
    sunnyaz said:

    Thanks Everyone
    I am hanging in there. Just very tired all the time. I have had many people ask me if I am going to take legal action on this. I am so exhausted I don't even want to think about it. I still can't believe the surgeon missed the Lymph node that was seen on the sonogram and biopsied back in May. He took out thirty-four nodes in June, three were cancerous and he missed the largest one that he originally went in to remove. Anyone have any thoughts on this or experience something similar? Am I just really unlucky or does this happen a lot?

    sunnyaz
    Legal action has been on my mind a couple of times. But like you, I'm so exausted and I'm simply praying that something will help me. Just reading your situation though, makes me wonder if the surgeon left something in my neck and this is why the cancer is still growing into my lungs. I remember my daughter telling me that the surgeon said, there was still another nodule attached to my vocal cord. But a special surgeon would have to remove it. But I mentioned it before, and the doctor denied it. I'm thinking of seeing a new endo to make sure nothing else is still in my neck.

    I know you don't want to go through another surgery. But it's probably best, so that it won't spread. Stay strong and God bless.

    Veronica
  • sunnyaz
    sunnyaz Member Posts: 582
    #19
    veronica57 said:

    sunnyaz
    Legal action has been on my mind a couple of times. But like you, I'm so exausted and I'm simply praying that something will help me. Just reading your situation though, makes me wonder if the surgeon left something in my neck and this is why the cancer is still growing into my lungs. I remember my daughter telling me that the surgeon said, there was still another nodule attached to my vocal cord. But a special surgeon would have to remove it. But I mentioned it before, and the doctor denied it. I'm thinking of seeing a new endo to make sure nothing else is still in my neck.

    I know you don't want to go through another surgery. But it's probably best, so that it won't spread. Stay strong and God bless.

    Veronica

    Hi Veronica
    Yep, I just don't have the energy to think about legal action at this point either. I think my husband is going to have to cover most of that. I am going into surgery tomorrow. Still don't have a time yet. I have to call in the morning to get my OR slot. Wish me luck and keep me in your prayers.

    Julie-SunnyAZ
  • veronica57
    veronica57 Member Posts: 98
    #20
    sunnyaz said:

    Hi Veronica
    Yep, I just don't have the energy to think about legal action at this point either. I think my husband is going to have to cover most of that. I am going into surgery tomorrow. Still don't have a time yet. I have to call in the morning to get my OR slot. Wish me luck and keep me in your prayers.

    Julie-SunnyAZ

    Good luck Julie
    I am wishing you luck and my prayers are with you.
    Veronica
  • sunnyaz
    sunnyaz Member Posts: 582
    #21
    Surgery was a success!
    I am home from the hospital and all went well. Three hours in the OR and he found the node plus a few more that were hiding behind it. He thinks he got it all. I will go back for follow up on the 28th and then four to six weeks later more RAI to kill any microscopic cells that may still be present. I am very tired and sore but happy to be alive and home with my family and my best buddy, my Parrot named Willie Q. Cazoo. When I arrived home yesterday and opened the truck door, he saw me through the window and I heard him scream, "Mom's Home!" Made me so happy. He hasn't stopped talking to me since I got home. Thanks to everyone for your powerful prayers and thoughts. This board has been so good for me. I hope I have been able to help others as well.

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