What generally happens from here?

Sally08
Sally08 Member Posts: 46
edited March 2014 in Thyroid Cancer #1
My doctors are saying that once we do the I-131 that I'll be as good as "cured" and will only come in once every 2 years for the "typical procedures" to make sure the cancer doesn't show again. They haven't even been able to pinpoint what stage I'm in.
I've done some reading and I found out that thyroid cancer typically spreads to the bones, lungs, and neck.
What am I in store for?
I know I should ask my doctor but I'm sooo sick of hearing her tell me "cheer up at least you only have thryoid cancer, you'll be just fine."
And when she's not saying that she's freakling me out by telling me she doesn't understand how a perfectly healthy 22 year old gets thryoid cancer.
Oh!! how reassuring!!

My doctor saying she has no clue how I "got" cancer but she's ever SO sure I'll be just fine and need to just stop moping...lol
Sorry. lol just really needed to vent too.

Comments

  • slickwilly
    slickwilly Member Posts: 334 Member
    #2
    Sally08
    I am sorry you have cancer. I know your stressed but I suspect you have been reading some older articles on this type of cancer. Years ago it was not caught early and would spread. With new tests it is now caught in the early stages and the prognosis is great compared to other cancers. If you click on Cancer Information on the right side of your screen and type thyroid cancer into the search engine you will find information that might make you feel better. Cancer brings with it lots of emotional issues and we never forget we had cancer. Sometimes the side effects of the treatment stay with us for the rest of our lives. But I really suspect you will be living a long life and I hope a very happy one. God Bless Slickwilly
  • Sally08
    Sally08 Member Posts: 46
    #3
    slickwilly said:

    Sally08
    I am sorry you have cancer. I know your stressed but I suspect you have been reading some older articles on this type of cancer. Years ago it was not caught early and would spread. With new tests it is now caught in the early stages and the prognosis is great compared to other cancers. If you click on Cancer Information on the right side of your screen and type thyroid cancer into the search engine you will find information that might make you feel better. Cancer brings with it lots of emotional issues and we never forget we had cancer. Sometimes the side effects of the treatment stay with us for the rest of our lives. But I really suspect you will be living a long life and I hope a very happy one. God Bless Slickwilly

    slickwilly
    Thanks. The Information I recieved was from the Seattle Cancer Care Alliance, they mailed me some brochures and packets of information. I'll check this site out as well thanks. I think what's psyching me out the most is knowing it's already spread. But they did say they got all of it this time around.
    Sally
  • elliott123
    elliott123 Member Posts: 2
    #4
    Cause of thyroid cancer?
    First thing my endocrinologist ever asked me was "were you exposed to a lot of radiation when you were younger?" Didn't know how that factored into bedside therapy of a doctor...how about a hello? or how are you?....but no one has been able to tell me why I got thyroid cancer, but I have it, so I have to deal with it from here.

    Diagnosed with it - thyroid cancer - about 1 and 1/2 years ago - thyroid removed a few weeks later. Had radioactive iodine therapy a few weeks later. About a year after that, found out via ultrasound that I had a lymph node with thyroid cancer in it (important note here - lymph nodes were not removed during my thyroid cancer surgery). I will have the lymph node(s) removed in a few weeks during surgery and then will have radioactive iodine therapy again a few weeks later after my low iodine diet again.

    Every single day is a challenge. I am a young man with a pregnant wife and don't want to make her a widow. Some days I get depressed and ask why...why me?...why do I have cancer? But I always am thankful that I have a good life (for the most part, except for the cancer) and a great family and wife. I always tell my wife that I want nothing more than to be a great husband and a great father (when she delivers our child) if I could stay healthy and cancer free. I tell my wife all the time that I could dig ditches for the rest of my life or drive a truck for the rest of my life - and as long as I have her and as long as I am healthy.

    One thing that I have learned from having cancer is that every day I have on this earth when I am mostly healthy is important.
  • Sally08
    Sally08 Member Posts: 46
    #5
    elliott123 said:

    Cause of thyroid cancer?
    First thing my endocrinologist ever asked me was "were you exposed to a lot of radiation when you were younger?" Didn't know how that factored into bedside therapy of a doctor...how about a hello? or how are you?....but no one has been able to tell me why I got thyroid cancer, but I have it, so I have to deal with it from here.

    Diagnosed with it - thyroid cancer - about 1 and 1/2 years ago - thyroid removed a few weeks later. Had radioactive iodine therapy a few weeks later. About a year after that, found out via ultrasound that I had a lymph node with thyroid cancer in it (important note here - lymph nodes were not removed during my thyroid cancer surgery). I will have the lymph node(s) removed in a few weeks during surgery and then will have radioactive iodine therapy again a few weeks later after my low iodine diet again.

    Every single day is a challenge. I am a young man with a pregnant wife and don't want to make her a widow. Some days I get depressed and ask why...why me?...why do I have cancer? But I always am thankful that I have a good life (for the most part, except for the cancer) and a great family and wife. I always tell my wife that I want nothing more than to be a great husband and a great father (when she delivers our child) if I could stay healthy and cancer free. I tell my wife all the time that I could dig ditches for the rest of my life or drive a truck for the rest of my life - and as long as I have her and as long as I am healthy.

    One thing that I have learned from having cancer is that every day I have on this earth when I am mostly healthy is important.

    Thank you elliott123 for
    Thank you elliott123 for sharing.
    I like your perspective... kind of a "it is what it is.... but those healthy days are awesome!"
    lol
    It's also nice to hear from someone with some of the same struggles.... With you and your wife expecting... and for me a single mom... It's refreshing... less isolating. lol

    You're right... fighting the diagnosis wont change it... (as much as I'd LOVE to think it will) lololol

    Good Luck to you... let me know how things go...
    I'm starting I-131 tomorrow so won't be around a computer till about first week in March.
    Thanks again :)
  • soggycereal
    soggycereal Member Posts: 1
    #6
    Hey there. I hope that you will read my profile, because I talk exactly about what your doctor is saying.
    I personally think you should get a new, more considerate doctor. She obviously does not know that, other than radiation exposure, and possible genetics (they JUST found that out 2 weeks ago), NO ONE knows why people get thyroid cancer. Go to www.checkyourneck.com
    I would love to hear how you are doing.
  • cboo1974
    cboo1974 Member Posts: 56
    #7
    soggycereal said:

    Hey there. I hope that you will read my profile, because I talk exactly about what your doctor is saying.
    I personally think you should get a new, more considerate doctor. She obviously does not know that, other than radiation exposure, and possible genetics (they JUST found that out 2 weeks ago), NO ONE knows why people get thyroid cancer. Go to www.checkyourneck.com
    I would love to hear how you are doing.

    soggy you have read my mind, I just didn't quite know how to phrase it but you said it! Ever since I had my thyroid removed I have been nothing but tired. I can lay down anytime and fall asleep w/o any problem. As far as you going into seizures, that is scary. I had the same problem after my second surgery to remove the rest of my thyroid. My hands and feet were tingly and my face was twitching. Went to my ent and he sent me over to the er so that they could get calcium into my system via an IV, had to spend 2 days in the hospital next to a chatty Cathy that by the end I was about ready to throw my pillow at her. (lol) then just a few weeks ago I told my ent that my hands and feet started tingling again and when he brought up my current blood work that my oncologist had requested he noticed that my calcium level had dropped. Here we go again I thought. Life during and after this "good" cancer is no picnic. It may not be as bad as having to do chemo or external radiation but it's still rough to handle, especially the low level of energy.
    Cindy
  • Davemo1964
    Davemo1964 Member Posts: 1
    #8
    Sally - Hang in there and
    Sally - Hang in there and know that people out there are sending you love. My Mom is struggling thru a unknown cancer situation of which thyroid may be involved. My last 4 weeks seems like a bad dream. The fact that you are a thyroid "C" survicor automatically qualifies for hugs, prayers and best wishes. Let us know as things unfold and I personally am praying for you. Hang in there
    Dave
  • jcvolt
    jcvolt Member Posts: 69
    #9
    Same boat
    I found out I had thyroid cancer last month was bullied into a total thyroidectomy without anybody discussing any options with me and now I am just hanging here. My doctor hasn't started me on replacement hormones and hasn't said anything about any follow up. I had to start taking my old thyroid hormones that I was taking for hashimotos because my bp dropped to 60 over 40. I had to go back in the hospital because my calcium crashed and now I am on calcium supplements that make my belly ache. I called my doctor several times but she just blows me off. I have an appointment on Tuesday, that will be 2 weeks after my surgery and I think I may be firing my doctor.
  • JimInSJ
    JimInSJ Member Posts: 3
    #10
    jcvolt said:

    Same boat
    I found out I had thyroid cancer last month was bullied into a total thyroidectomy without anybody discussing any options with me and now I am just hanging here. My doctor hasn't started me on replacement hormones and hasn't said anything about any follow up. I had to start taking my old thyroid hormones that I was taking for hashimotos because my bp dropped to 60 over 40. I had to go back in the hospital because my calcium crashed and now I am on calcium supplements that make my belly ache. I called my doctor several times but she just blows me off. I have an appointment on Tuesday, that will be 2 weeks after my surgery and I think I may be firing my doctor.

    I think you do need to find
    I think you do need to find a new doctor, one who will respond to your needs. To not give you a plan following the thyroidectomy is not acceptable. I started on Cytomel right away, then went off in preparation for the RAI treatment, and three days after the I-131 dosage I started up on Levoxyl. I also take calcium as they removed three out of four parathyroids. I'm taking Viactiv three times a day since I have swallowing problems with large pills because of my paralyzed vocal cord.
  • jcvolt
    jcvolt Member Posts: 69
    #11
    JimInSJ said:

    I think you do need to find
    I think you do need to find a new doctor, one who will respond to your needs. To not give you a plan following the thyroidectomy is not acceptable. I started on Cytomel right away, then went off in preparation for the RAI treatment, and three days after the I-131 dosage I started up on Levoxyl. I also take calcium as they removed three out of four parathyroids. I'm taking Viactiv three times a day since I have swallowing problems with large pills because of my paralyzed vocal cord.

    New Doctor
    Unfortunately endocrinologists are hard to come by around here. I am hoping my family doctor can take over from here, I will have to see what she has to say tomorrow. I am pretty angry with her right now and have no intention of just going along with whatever she decides.
  • Sally08
    Sally08 Member Posts: 46
    #12
    cboo1974 said:

    soggy you have read my mind, I just didn't quite know how to phrase it but you said it! Ever since I had my thyroid removed I have been nothing but tired. I can lay down anytime and fall asleep w/o any problem. As far as you going into seizures, that is scary. I had the same problem after my second surgery to remove the rest of my thyroid. My hands and feet were tingly and my face was twitching. Went to my ent and he sent me over to the er so that they could get calcium into my system via an IV, had to spend 2 days in the hospital next to a chatty Cathy that by the end I was about ready to throw my pillow at her. (lol) then just a few weeks ago I told my ent that my hands and feet started tingling again and when he brought up my current blood work that my oncologist had requested he noticed that my calcium level had dropped. Here we go again I thought. Life during and after this "good" cancer is no picnic. It may not be as bad as having to do chemo or external radiation but it's still rough to handle, especially the low level of energy.
    Cindy

    Thank You
    Thanks everyone. right before my I-131 My computer died on me... it's still dead.... so I've not been able to get to the library for a while now... treatment went well I think... the Nuclear Medicine dept. scared me afterwards though... said they had to reso the body scan an did and also added another test to what my endocrinologist ordered. that was all done on 3-3-09... I'm still waiting on the results... and it's now 3-24-09 so my nerved are just a little ruined.
    After my second surgery my fingertips ... up to my knuckles and hands have been tingling and I have been dropping things for no reason... but the doctors keep telling me my cacium level is fine... the surgeon had warned me that he may have taken out a couple of my parathyroid glands so to be on the loookout.
    *sigh*
    Just another lovely day in the neighborhood. lol
    thank you for the support.
  • Sally08
    Sally08 Member Posts: 46
    #13
    soggycereal said:

    Hey there. I hope that you will read my profile, because I talk exactly about what your doctor is saying.
    I personally think you should get a new, more considerate doctor. She obviously does not know that, other than radiation exposure, and possible genetics (they JUST found that out 2 weeks ago), NO ONE knows why people get thyroid cancer. Go to www.checkyourneck.com
    I would love to hear how you are doing.

    Your Profile
    Hit it on the nose!
    I like cominf here to CSN because I can finally talk to people who are going through the same things and I can feel like I'm not too crazy for still having a hard time with the treatment and worries of what cancer means to me...
    lol
    Your profile is a perfect portrait lol
    thyroid cancer is NOT just like being diagnosed with appendicitis... lol
    (that's pretty much the impresiion I recieve from people around me....
    Thanks.
    Sorry to ramble.
    Sally
  • jcvolt
    jcvolt Member Posts: 69
    #14
    Done
    Doctor says I am done !!

    Cancer was only 8mm so I don't need to worry about left over thyroid tissue, don't need body scan or RAI !!!!!
  • flygirlc
    flygirlc Member Posts: 30 Member
    #15
    jcvolt said:

    New Doctor
    Unfortunately endocrinologists are hard to come by around here. I am hoping my family doctor can take over from here, I will have to see what she has to say tomorrow. I am pretty angry with her right now and have no intention of just going along with whatever she decides.

    New doctor
    Hi, my thyroid cancer was diagnosed by my ENT who was also my surgeon. He's been great from day one. I haven't seen an endocrinologist yet, I live in a small rural town, but he's monitoring my t4 and tsh levels closely and just fine tuning my meds now. Maybe if your family dr isn't comfortable, an ENT would be an alternative? Best of luck to you!
  • flygirlc
    flygirlc Member Posts: 30 Member
    #16
    Sally08 said:

    Thank You
    Thanks everyone. right before my I-131 My computer died on me... it's still dead.... so I've not been able to get to the library for a while now... treatment went well I think... the Nuclear Medicine dept. scared me afterwards though... said they had to reso the body scan an did and also added another test to what my endocrinologist ordered. that was all done on 3-3-09... I'm still waiting on the results... and it's now 3-24-09 so my nerved are just a little ruined.
    After my second surgery my fingertips ... up to my knuckles and hands have been tingling and I have been dropping things for no reason... but the doctors keep telling me my cacium level is fine... the surgeon had warned me that he may have taken out a couple of my parathyroid glands so to be on the loookout.
    *sigh*
    Just another lovely day in the neighborhood. lol
    thank you for the support.

    More resources
    Hey, check out thyca.org They have excellent resources about almost everything regarding thyroid cancer that you can think of!!! Their site was a life saver to me! Even though my dr's were great, thyca has things like lists of questions you might want to ask your dr and info about the different stages and everything else. I think it's messed up that your dr won't even tell you what stage you're in! (hope I'm not thinking of a different post)
    Something you might want to consider is getting a friend or family member to go with you to act as your advocate? Sometimes it's easier to stand up for someone else than yourself and maybe they could help your dr communicate better with you. Good luck!
  • Sally08
    Sally08 Member Posts: 46
    #17
    What Now???
    I got a call from my primary care on thursday morning... he asked me to meet him in the office before the day was through. I met with him and he said they think the cancer is spreading to my right lung... has anyone ever dealt with this? I'm sooo scared... they did testing on march 3rd after I-131 treatment and the report said that the top portion of my right lung lit up as well as underneath the left side of my clavical bone (collar bone).
    thanks.
    Sally
  • daughdx19
    daughdx19 Member Posts: 8
    #18
    Sally08 said:

    What Now???
    I got a call from my primary care on thursday morning... he asked me to meet him in the office before the day was through. I met with him and he said they think the cancer is spreading to my right lung... has anyone ever dealt with this? I'm sooo scared... they did testing on march 3rd after I-131 treatment and the report said that the top portion of my right lung lit up as well as underneath the left side of my clavical bone (collar bone).
    thanks.
    Sally

    Thyroid Cancer Specialist is Necessary
    Hi Sally,

    My daughter Lynn was diagnosed with thyroid cancer in December of 2007 at 19 years old.. She had her first surgery that consisted of a bilateral neck disection, full thyroidectomy and all her parathyroids removed.. Her doctor removed 90 lymph nodes from her neck of which 56 were cancer. (Papilary cancer). At this time, 1 of her parathyroid glands were transplanted back into her neck on another muscle.. Also, during surgery the Dr. informed us that her Right Laryngeal Nerve was thicken and could be invaded by cancer. The concensus was to leave the nerve alone because if it was cancerous they would attack it chemically with RAI.
    We waited until March to prepare for RAI,because her left vocal cord was working at only about 40% and if the right was paralysed by RAI she would need a trach.
    While waiting a 2 lymph nodes grew back and needed to be removed.. April 25, 2008, second surgery to remove both.. One under the left clavical area and the other in the anterior mediastinal just below where the thyroid sits..
    Finally, on May 27, 2008 she had 204 mCi of RAI and was in quarantine in the hospital for 3 full days. She was released the 30th of May..
    During all this, she was on supplemental calcium for 6 months. Now calcium free with level at 8.7 which is perfect.. She is on Levothyroxine of 200mcg. Suppressing. Her voice is strong.

    She just had a full neck ultrasound as beginning of March with NOE ( no evidence of) and she had a full neck and chest cat scan Friday 3/27/2009.. I am waiting and praying for NEO.
    Also will have wb scan in June.. If necessary RAI again. I am praying for NEO.

    You are not alone.. I have read all the postings on this site. This is the first time I felt so strong to write to you.. We are in Chicago, Illinois. Dr. Kristen Pytynia at Univ. of Illinois did my daughter's surgery. She is an ENT and also a thyroid cancer specialist. She trained at M.D. Anderson in Texas.. I feel blessed that we were referred to her because of my daughter's extensive case. She did not have lung involvement but she had it under her clavical bone and anterior mediastinal area is part of the upper chest . Please find a specialist.. God Bless you, Maria
  • Sally08
    Sally08 Member Posts: 46
    #19
    daughdx19 said:

    Thyroid Cancer Specialist is Necessary
    Hi Sally,

    My daughter Lynn was diagnosed with thyroid cancer in December of 2007 at 19 years old.. She had her first surgery that consisted of a bilateral neck disection, full thyroidectomy and all her parathyroids removed.. Her doctor removed 90 lymph nodes from her neck of which 56 were cancer. (Papilary cancer). At this time, 1 of her parathyroid glands were transplanted back into her neck on another muscle.. Also, during surgery the Dr. informed us that her Right Laryngeal Nerve was thicken and could be invaded by cancer. The concensus was to leave the nerve alone because if it was cancerous they would attack it chemically with RAI.
    We waited until March to prepare for RAI,because her left vocal cord was working at only about 40% and if the right was paralysed by RAI she would need a trach.
    While waiting a 2 lymph nodes grew back and needed to be removed.. April 25, 2008, second surgery to remove both.. One under the left clavical area and the other in the anterior mediastinal just below where the thyroid sits..
    Finally, on May 27, 2008 she had 204 mCi of RAI and was in quarantine in the hospital for 3 full days. She was released the 30th of May..
    During all this, she was on supplemental calcium for 6 months. Now calcium free with level at 8.7 which is perfect.. She is on Levothyroxine of 200mcg. Suppressing. Her voice is strong.

    She just had a full neck ultrasound as beginning of March with NOE ( no evidence of) and she had a full neck and chest cat scan Friday 3/27/2009.. I am waiting and praying for NEO.
    Also will have wb scan in June.. If necessary RAI again. I am praying for NEO.

    You are not alone.. I have read all the postings on this site. This is the first time I felt so strong to write to you.. We are in Chicago, Illinois. Dr. Kristen Pytynia at Univ. of Illinois did my daughter's surgery. She is an ENT and also a thyroid cancer specialist. She trained at M.D. Anderson in Texas.. I feel blessed that we were referred to her because of my daughter's extensive case. She did not have lung involvement but she had it under her clavical bone and anterior mediastinal area is part of the upper chest . Please find a specialist.. God Bless you, Maria

    daughdx19...
    Wow, sounds like she been through a lot already! Have you heard back from the scan on 3/27/2009 yet? Was it NEO?

    I do have a specialist.... an Endocrinologist... I went in on 4-13-19 for test results ... and when I got there she said to come back on August 11th for the test results... the all the tests were inconsistent... and inconclusive... that in August she would be able to get an accurate count of my Thyroglobulin.... so now it's wait and pray time again...

    God Bless you and your daughter,
    Sally
  • daughdx19
    daughdx19 Member Posts: 8
    #20
    Were the test inconclusive, because you just had RAI? August is a longtime to wait, but maybe they are waiting to let the RAI do its job..

    I have the utmost confidence in my daughter's doctors.. The Ct scan from 3/27 showed only 2 lymph nodes that both srunk from 2cm,16mm to 11mm each.. Surgeon said everything looks good. Questioned her about RAI scan schedule for June and she said if anything lights up then they have to treat. I am hoping that the RAI continues to shrink what's left and my daughter won't need another dose.. If she does, I have prepared myself for that..

    My daughter just turned 21 and she feels great. But she has never felt bad. She doesn't discuss it unless questioned about it. I am really proud of her strength and resolve. She has not given this disease control.

    My prayers go out to everyone on the CSN website..
    May God Bless you and Keep you safe!!!!!!!
  • kelly-575
    kelly-575 Member Posts: 24
    #21
    hello recovering
    Hi I was reading your post and you reminded me of myself a couple months back. I was am 25 and was diagnosed with papillary thyroid cancer last oct. I had my full thyroidectomy in dec and did my radiation in feb of this year. In my opinion your doctor shouldnt be telling you it is just thyroid cancer it is a very scary feeling to know you have cancer and to know your have to have an important gland removed from your body. People dont take it seriuosly and it is frusturating.. You mite be physically fine but your body does go through alot mentally and emotionally. Youi said that your doc said you go back every two years? The first year you are supposed to go back every 6 months and then once a year after that. If you want to talk more or have any questions writ back

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