anaplastic cancer of Thyroid

2

Comments

  • beat atc
    beat atc Member Posts: 64 Member
    beat atc said:

    18 months out

    Want to praise GOD!First for being alive,second for believing GOD that I could survive and third all the wonderful things I now know !             all of your stories good and bad! Made me a better human being! THANKS

    Beat atc
    Start my 23 month ! Feeling tired at end of day , but good . Good luck everyone and prayers !
  • alapah
    alapah Member Posts: 287
    beat atc said:

    Beat atc
    Start my 23 month ! Feeling tired at end of day , but good . Good luck everyone and prayers !

    so glad to see your post

    Was just thinking about you earlier this week! Very best to you.

    e

  • beat atc
    beat atc Member Posts: 64 Member
    alapah said:

    so glad to see your post

    Was just thinking about you earlier this week! Very best to you.

    e

    Beat atc
    Had my scans with dye and contrast showed a spot on lungs, rescan in month a. AnapLastic b, lung cancer c nothing , prayers for c! Doc says a, feel real soon , b scan will pick up better , c would be my choice! This stuff dont faze you after a while .
  • bflives
    bflives Member Posts: 3
    beat atc said:

    Beat atc
    Had my scans with dye and contrast showed a spot on lungs, rescan in month a. AnapLastic b, lung cancer c nothing , prayers for c! Doc says a, feel real soon , b scan will pick up better , c would be my choice! This stuff dont faze you after a while .

    This will NOT get you out of

    This will NOT get you out of picking blueberries with me! I'm lovin' ya!

  • beat atc said:

    Beat atc
    Had my scans with dye and contrast showed a spot on lungs, rescan in month a. AnapLastic b, lung cancer c nothing , prayers for c! Doc says a, feel real soon , b scan will pick up better , c would be my choice! This stuff dont faze you after a while .

    ATC follow ups

    Praying it's nothing!!  You're giving me hope that my friend is going to be ok. 

  • beat atc
    beat atc Member Posts: 64 Member
    unknown said:

    ATC follow ups

    Praying it's nothing!!  You're giving me hope that my friend is going to be ok. 

    Beat atc
    Still here, still fine!!! Thanks to all of you!sorry I have not been on the board getting on with life!!!!!!
  • alapah
    alapah Member Posts: 287
    Happy New Year

    So very glad to see your post! 

    eileen

  • tarabell413
    tarabell413 Member Posts: 1
    beat atc said:

    Beat atc
    Still here, still fine!!! Thanks to all of you!sorry I have not been on the board getting on with life!!!!!!

    so glad to hear your story

    my friend ,a 44 year old female with 3 children has just started a clinical trial in boston,had the growth operated on three weeks ago,needing incouraging words

  • beat atc
    beat atc Member Posts: 64 Member

    so glad to hear your story

    my friend ,a 44 year old female with 3 children has just started a clinical trial in boston,had the growth operated on three weeks ago,needing incouraging words

    Atc
    Saw your post, glad I can give someone Hope ! I believe your friend can win also , I think 44 years old works in her favor, docs kept saying no to me , witch made me stronger , I pray they got it fast ! And she does not listen to stats ,
  • chriscoxx
    chriscoxx Member Posts: 3 Member
    Just finishing ATC - my outlook

    Hello there,

    For those who have had ATC, most are diagnosed so late that it is considered inoperable at the time of diagnosis. I went to the doctor last February (2015) with a lump in my throat. CT scan showed a lump and doc suggested thyroid removal. During surgery in April 2015, the doc closed me up and said he could not operate around the tumor which had started to turn fibrostic (woodsy appearance) and still was left without a diagnosis. As far as anyone could tell I just had an enlarged thyroid that now can't be removed. That doc sent me to his mentor which was at University of KY Medical Center in Lexington, KY. My first appointment with him was April 29th. Due to surgical rules, he couldn't operate for 6 weeks even if he wanted to that day. So, for 6 weeks it was more tests and very thorough exams. Cutting through the 6 weeks a MRI left the doctor with no chance to operate based on the medical evidence. Still no diagnosis other than a biospy that came back I had a Hurthle Cell Neoplasm, which neoplasm references a tumor but benign or malignancy is yet unknown. All evidence so far and the physical aspects (which was shifting my trachea by May and causing voice problems) allowed the doctor to assume it was ATC but not definitive and now I am inoperable for the 2nd time. He told me he had to place my case before a medical review board for a group decision onhow to proceed. May 4th, I found out that day why they say ATC in operable because of everything it wraps around and attaches to mainly the carotid artery. The results of the board came back and the doctor said against all medical evidence and the odds of a successful surgery, they had decided to attempt this surgery with no gurantees. Surgery was set for May 25th. This is where it gets exciting. Really.

    In February, the tumor was about the size of a golf ball. By May, it was bigger than a banana almost from ear to ear but not quite. It was wrapped around both my carotid artery and my jugular vein as well as grew through my throat and invaded my vocal cords. Sidenote: #1 cause of death with ATC is through aphyxiation and I was well on my way to that.

    May 25th, preop table: Dr walks iin and the first thing he says is that he has been praying for me and for this surgery. How exciting is that? Has anyone ever heard a doc say that period? I was amazed of the conviction and the humbleness this doctor was showing me. Long part of this story made short and after a 7 hour surgery which ended up being a right side radical neck dissection with thyroidectomy as well as multiple lymphectomies, my family tells me that the doctor came into the waiting room and pulled them into a side room and as the family gathered around - the doc slapped his hand on the table and said "I got that sucker and every bit of it." He was amazed how easily the wrapped tumor lifted off all of those vital organs as if it was barely attached. Praise God for all of this. 

    He sent the specimen off for an official diagnosis and there it was - ATC and in all its' glory. I had learned something through the next 2 weeks as a care plan was put together for the metastatic portion of this cancer.  ATC is a secondary stage 4 cancer. It always is a mutation from another already formed cancer. So if you have ATC you have another cancer that caused it. This was my case. Hurthle Cell Carcinoma (Stage IV as well) and ATC so I was facing 2 Stage IV cancers. Praising God here for the fact inoperable was made operable and now a success and all I am dealing with now is any residual cells of both cancers that may have lingered around and migrated, hence metastatic.   

    2 vocal cords were loss because of this so I have a hoarseness and raspy voice that beats walking around with a voice box. Praise God for that. 35 radiation treatments and 4 rounds of chemo later (last chemo was Christmas Eve 2015) they have done CT scans every 6 weeks and nothing noted in my neck or in their new concern, my lungs which is first migration site for ATC and the Hurthle cells. They have chased a few little blips on my lungs and finally said if they aren't growing they aren't cancer and stopped all treatments. Chemo was 2 rounds of Paclitaxel (Taxol) and 2 rounds of Paclitaxil and Carboplatin together. Each round was 7 weeks followed by a 2 week break. Today, the only side effect of any of the treatments has been radiation. Radiation started in July and was over in August which I was almost immediately admitted for radiation poisoning. Radiation killed off my salivary glands and esophageal nerve and of course I had to have a feeding tube put in for nutritional support. I am happy to say my salivary glands are at 75% working capacity and I am eating soft formed foods and they say only time will heal the nerves that will allow me to return to a full diet but I can eat enough even with a struggle to maintain my weight so a week from today (March 8th) my tube is coming out. I just wanted to share my testimony and honor the God I serve with all of the amazing miracles from beginning to end that cannot be chalked up to luck, coincidence or chance. I am finally on a quarterly CT Scan check up but I do have to take that radioactive iodine pill July 28th which is really an ineffective treatment but works sometimes on the Hurthle Cell. There are no evidence of either cancers but any residual cells roaming may not show up but exist. So , every precaution is in good measure. 

     

    God bless you all and I hope you all have a testimony and a success story as I have shared.

  • upperwestside
    upperwestside Member Posts: 6 Member
    chriscoxx said:

    Just finishing ATC - my outlook

    Hello there,

    For those who have had ATC, most are diagnosed so late that it is considered inoperable at the time of diagnosis. I went to the doctor last February (2015) with a lump in my throat. CT scan showed a lump and doc suggested thyroid removal. During surgery in April 2015, the doc closed me up and said he could not operate around the tumor which had started to turn fibrostic (woodsy appearance) and still was left without a diagnosis. As far as anyone could tell I just had an enlarged thyroid that now can't be removed. That doc sent me to his mentor which was at University of KY Medical Center in Lexington, KY. My first appointment with him was April 29th. Due to surgical rules, he couldn't operate for 6 weeks even if he wanted to that day. So, for 6 weeks it was more tests and very thorough exams. Cutting through the 6 weeks a MRI left the doctor with no chance to operate based on the medical evidence. Still no diagnosis other than a biospy that came back I had a Hurthle Cell Neoplasm, which neoplasm references a tumor but benign or malignancy is yet unknown. All evidence so far and the physical aspects (which was shifting my trachea by May and causing voice problems) allowed the doctor to assume it was ATC but not definitive and now I am inoperable for the 2nd time. He told me he had to place my case before a medical review board for a group decision onhow to proceed. May 4th, I found out that day why they say ATC in operable because of everything it wraps around and attaches to mainly the carotid artery. The results of the board came back and the doctor said against all medical evidence and the odds of a successful surgery, they had decided to attempt this surgery with no gurantees. Surgery was set for May 25th. This is where it gets exciting. Really.

    In February, the tumor was about the size of a golf ball. By May, it was bigger than a banana almost from ear to ear but not quite. It was wrapped around both my carotid artery and my jugular vein as well as grew through my throat and invaded my vocal cords. Sidenote: #1 cause of death with ATC is through aphyxiation and I was well on my way to that.

    May 25th, preop table: Dr walks iin and the first thing he says is that he has been praying for me and for this surgery. How exciting is that? Has anyone ever heard a doc say that period? I was amazed of the conviction and the humbleness this doctor was showing me. Long part of this story made short and after a 7 hour surgery which ended up being a right side radical neck dissection with thyroidectomy as well as multiple lymphectomies, my family tells me that the doctor came into the waiting room and pulled them into a side room and as the family gathered around - the doc slapped his hand on the table and said "I got that sucker and every bit of it." He was amazed how easily the wrapped tumor lifted off all of those vital organs as if it was barely attached. Praise God for all of this. 

    He sent the specimen off for an official diagnosis and there it was - ATC and in all its' glory. I had learned something through the next 2 weeks as a care plan was put together for the metastatic portion of this cancer.  ATC is a secondary stage 4 cancer. It always is a mutation from another already formed cancer. So if you have ATC you have another cancer that caused it. This was my case. Hurthle Cell Carcinoma (Stage IV as well) and ATC so I was facing 2 Stage IV cancers. Praising God here for the fact inoperable was made operable and now a success and all I am dealing with now is any residual cells of both cancers that may have lingered around and migrated, hence metastatic.   

    2 vocal cords were loss because of this so I have a hoarseness and raspy voice that beats walking around with a voice box. Praise God for that. 35 radiation treatments and 4 rounds of chemo later (last chemo was Christmas Eve 2015) they have done CT scans every 6 weeks and nothing noted in my neck or in their new concern, my lungs which is first migration site for ATC and the Hurthle cells. They have chased a few little blips on my lungs and finally said if they aren't growing they aren't cancer and stopped all treatments. Chemo was 2 rounds of Paclitaxel (Taxol) and 2 rounds of Paclitaxil and Carboplatin together. Each round was 7 weeks followed by a 2 week break. Today, the only side effect of any of the treatments has been radiation. Radiation started in July and was over in August which I was almost immediately admitted for radiation poisoning. Radiation killed off my salivary glands and esophageal nerve and of course I had to have a feeding tube put in for nutritional support. I am happy to say my salivary glands are at 75% working capacity and I am eating soft formed foods and they say only time will heal the nerves that will allow me to return to a full diet but I can eat enough even with a struggle to maintain my weight so a week from today (March 8th) my tube is coming out. I just wanted to share my testimony and honor the God I serve with all of the amazing miracles from beginning to end that cannot be chalked up to luck, coincidence or chance. I am finally on a quarterly CT Scan check up but I do have to take that radioactive iodine pill July 28th which is really an ineffective treatment but works sometimes on the Hurthle Cell. There are no evidence of either cancers but any residual cells roaming may not show up but exist. So , every precaution is in good measure. 

     

    God bless you all and I hope you all have a testimony and a success story as I have shared.

    Chris, that's wonderul that

    Chris, that's wonderul that you are doing so well. 

    You may be interested in another Thyroid cancer board which I like, check it out using the link below

    https://www.inspire.com/groups/thyca-thyroid-cancer-survivors-association/

  • chriscoxx
    chriscoxx Member Posts: 3 Member

    Chris, that's wonderul that

    Chris, that's wonderul that you are doing so well. 

    You may be interested in another Thyroid cancer board which I like, check it out using the link below

    https://www.inspire.com/groups/thyca-thyroid-cancer-survivors-association/

    Another miracle!!!

    I have to keep praising God for yet another miracle. No other word but amazing. Part of my ATC was that it caused a paralysis ofone of my vocal cords. My last visit 2 weeks ago, the doctor scopes my throat and has me do a few exercises and was astonished as he told me that by some miracle my vocal cord started working again and was no longer paralyzed. He just kept saying praise God for the healing. I am still amazed of how humble this doctor has been through my whole ordeal and has twice now given all of the glory to God. I have been in great hands by the Master Hand. Praise God and glory be given to Him. The doc says my vocal cords will strengthen as time goes by so we shall see.

     

    Upperwestside - I looked into that link. Thanks for sharing it.

  • Ms. HC
    Ms. HC Member Posts: 3
    edited August 2018 #34
    chriscoxx said:

    Another miracle!!!

    I have to keep praising God for yet another miracle. No other word but amazing. Part of my ATC was that it caused a paralysis ofone of my vocal cords. My last visit 2 weeks ago, the doctor scopes my throat and has me do a few exercises and was astonished as he told me that by some miracle my vocal cord started working again and was no longer paralyzed. He just kept saying praise God for the healing. I am still amazed of how humble this doctor has been through my whole ordeal and has twice now given all of the glory to God. I have been in great hands by the Master Hand. Praise God and glory be given to Him. The doc says my vocal cords will strengthen as time goes by so we shall see.

     

    Upperwestside - I looked into that link. Thanks for sharing it.

    Question

    Hello, I'm glad you received a miracle. Praise to God! I don't know if you would mind sharing with me the name of the doctor who treated you, or the hospital and the city. I would really appreciate it. Thank you!

  • Ms. HC
    Ms. HC Member Posts: 3
    edited August 2018 #35
    Mpamla said:

    Anaplastic
    My husband (50 years old) was diagnosed with Anaplastic Thyroid Cancer in early June of 2009. A lump appeared, seemingly over night on the left side of his neck. We went directly to ER. Dr thought it was a goiter. I'm an ICU RN and knew that a goiter didn't appear that quickly. The next morning, I phoned his primary Dr and told him that we needed a CT scan, thyroid levels, etc. It showed a large mass, deviated trachea. My husband already was feeling constricted. We then had a needle biopsy that was inconclusive, then an open biopsy that showed undifferentiated cells (a hallmark sign of anaplastic). We immediately found a well known oncologist in a much larger nearby city (St. Louis) This oncologist is the head of the cancer treatment center at this certain hospital. He immediately said we needed to see a surgeon because this thing was growing so quickly. He phoned this surgeon and sent us straight to his office. The surgeon set my husband up for surgery the following Tuesday. This was Thursday. He said "you need help and if I can help you, I'm going to do it." The surgery was 6 hours long. Complete thyroidectomy and left neck dissection.He felt as if he got most of the cancer, except for a piece that was attached to his carotid artery. Three days later we got the exact diagnosis of Anaplastic Thyroid Cancer. This was June 28, 2009, a month after he first felt the lump. We were devestated. PET scan of body was clear, though, so surgeon and oncologist suggested radiation. 5 days a week for 7 weeks. He lost 65 pounds, was sicker than anyone I've ever seen, but he made it thru. Follow up PET remained clear except for piece that remained on Carotid artery. Our surgeon referred us to a vascular surgeon and he, along with our original surgeon took a 5 inch piece of his carotid out, replaced it with a piece of his femoral artery. Again, a six hour very delicate surgery. So far, PET and CT's are clean. Miracle! We owe everything to our two fantastic doctors. He still has throat pain, ear pain at times. He's getting stronger everyday and we continue to pray. We owe it all to quick interventions from our Doctors. Good luck and pray.

    Question

    Hello, I'm glad you received a miracle. Praise to God! I don't know if you would mind sharing with me the name of the doctor who treated your husband or the hospital and the city. I would really appreciate it. Thank you!

  • Ms. HC
    Ms. HC Member Posts: 3
    edited August 2018 #36

    Hi, my name is Keith. my daughter who is 19 yrs old,got pregnantand had a babe on 1-28-03 she noticed a lump growing 21/2 months before she delived, the lump grew from a dime size to over a softball size lump in that time, we took her to the doctor and he told us that it was just a inlarged thyroid and that there was nothing wrong with her and after she had the babe they would remove it.the day came for her to deliver the babe ,at this time she could hardly breath,the hospital scoped her throat and found hardly any airway , they took emergency messures ,they had to airvac her from glenwood springs co. to denver,200 miles away to get a specialist to secure her an airway. we arrived in denver that night and the doctor told us that they would take the babe by c-section and secure her airway,then remove the thyroid. the next day the doctor went in to remove the tyroid and , he came out and told us that there was nothing they could do that it was not a tyroid problem but it was cancer and that this cancer had totally ingulfed her intire neck and everything vital in it.. we were devestated.all the specialist came in and told us that this type of cancer was called anaplastic tyroid cancer,and that there is no known cure,they told us thAT they would try agressive radiation and kemo treatmen, she was in a drud indused coma for 3 weeks ,also she never saw her babe that intire time, the pulmenary doctor told us that her heart was going to fail and if we want to remove her from life support, we never gave him that word ,because we never would give up hope on her,, while in the i.c.u.aprill(my daughter) developed a blood clot,my wife and i hit the floor we callled all the churches and family they came from many states ,my babe was dieing, we stayed by her bed side day and night never wanting to leave,we are beleivers in christ and when u believe and u pray with conviction althings are possible through the lord jesus christ...AFTER 3 WEEKS THE DOCTORS TOOK A CAT SCAN ,AND CAME TO US AND TOLD US THAT WE RECIEVED A MIRACLE AND THAT THE CANCER HAD SHRUNK OVER 50%
    WE JUST SHOUTED FOR Joy .3 days later they took her off life sopport they said that they can see air all the way around her windpipe ..that day she saw her babe for the first time it was a boy.. she was shocked because she thought she was having a girl hahahaaa.well everyday she got stronger and stronger. she was released from the hospitalon 3-11-03 and has to resume treatment at the university of NEW MEXICO cancer research center, today 4-4-03 she saw the doctor , he told her that the tumor has shrunk even more ,and that the lump she feels is probably dead tissue, they will do a cat-scan in 2 weeks she smiling and laughing and taking care of her babe .. we are believing God will finish what he has started .. take care if u would like to talk u can email me at qfatplumber@aol.com

    Question

    Hello, I'm glad your daughter received a miracle. Praise God! Do you think you could share the name of the doctor who treated your daughter or if nother possible, could please share the hospital and city where she had the surgery? Thank you so much, I would really appreciate your help.

  • beat atc
    beat atc Member Posts: 64 Member
    Good morning

    I did not receive any thing special, found it very early, they did not even what to treat me .my doc is retired.i believe my miracle was will to live, positive thinking  and I was young and strong enough to overcome! And of course God

  • beat atc
    beat atc Member Posts: 64 Member
    Stay positive , enjoy summer

    just wanted to say hi, 7 years coming up this fall for me.Things looked bleak for me those days, just so thankful for those people who I don’t see on the board anymore.Thanks alapah

  • gsuann
    gsuann Member Posts: 1 *

    I 'm 67 female and was diagnosed March of 2021 for ATC. I had my thyroid and 39 lymph nodes removed from the left side ( only 4 were positive) on April 13, 2021. All margins were clear at surgery. I then had 5 weeks of proton raditoon... 6 a week... and chemo onece a week foe 5 weeks. Which i had an allergic reaction to the paxil so it was stopped. I've had CT scans and PET scans every 3 months which have been clear. I started on an immunotherapy Keytruda every 3 wks since July 2021. Having side affects from the Keytruda of muscle and joint pain. Is anyone else on this therapy? Scared that it's the C metastasis... otherwise doing good after almost 1 1/2 years. LKCA ' let's kick cancers ****!!!

  • rich67
    rich67 Member Posts: 3 Member

    God is awesome. If you haven’t included spirituality in your healing journey, these posts in this thread should be more than enough evidence that doing so will help heal your body!!

  • JerseyGurl
    JerseyGurl Member Posts: 1 *

    I have anaplastic thyroid cancer. I start radiation and chemo on October 10th for 6 weeks. Once a week for the chemo, every day for radiation. Then 3 months to heal and then I will begin to get scans again and get radioactive iodine pill. I wii continue for at least 2 years to monitor the cancer since it is so aggressive.