tall cell papillary carcinoma

ILDenlou58 said:

tall cell story
hi i was told i had thyroid cancer in march 29 2012 had 22 needle biosy in neck had radal surgery in june 4 took out 12 lymph nodes saliva gland 1parthyroid whole thyroid gland came back tall cell had i131 aug 4th waiting to see if medicine worked i been told that i131 doesnt always kill tall cell what has been your story with tall cell can you please write back denlou

I had my thyroid removed in 2008 with RI 131 followup treatment.  24 lymph nodes were removed from my neck and 12 were positive for papillary cancer.  For the next 4 years, my annual body scan was negative although in March 2012, my body scan was again negative but my thyrogobulin antibodies were very high.  Had a PET scan and revealed four "hot" spots (2 in neck and 2 in chest).  Then had CT scan with resonation to identify sizes, then had fine needle biopsy done on them and results showed TCV.  Papillary thyroid cancer with TCV is resistant to the typical RI 131 treatment as well as chemotherapy.  Because of the unique location of the cancer, radiation is not warranted.  My ENT and Endocronologist conferred with John Hopkins and their recommendation was not to do anything at this time, just monitor the growth through bi-annual PET and CT scans.  John Hopkins stated that Memorial Sloan-Kettering Cancer Center in NYC is conducting research and clinical trials with TCV.  Upon my initial consultation with Dr. Alan Ho (MSKCC) I did not qualify for the clinical trial because my TCV had not progressed enough.  Since then, quarterly blood work was done to monitor the thyrogobulin antibodies, as this can be an indicator for increased activity.  My PET scan for December 2012 revealed some growth, but no spreading.  Although my followup CT scan revealed significant growth, ranging anywhere from 35% to 80% as compared to the CT scan done in April 2012.  In May 2012, I have consulted with a thoracic oncologist surgeon and stated that the cancerous lymph nodes in my chest are too small for surgery at that time, stating that the surgery is quite invasive. 

Initially my ENT felt that surgery on my neck is not warranted since one of the two lymph nodes has attached itself to the scare tissue on my left vocal cord nerve and there may be serious damage as well as increased scare tissue.  Although since my most recent PET and CT scans showing significant growth, my ENT is considering surgery. 

I do have a follow up appointment with Dr. Alan Ho in January for further consultation and recommendations.  Not sure if I will qualify for the clinical trial, but more importantly I need more guidance.  The feedback I receive will determine if I pursue neck and thoracic surgery.  I will be meeting with my thoracic surgeon in February, since the two cancerous lymph nodes in my chest (one at the bottom of my para-trachea and the other is nestled between my right lung and trachea).  These are the two largest, measuring 2 1/4" x 1 3/8" and 1 3/8" x 1 1/8".  I also had my initial biopsy redone to look for bRAF antibodies and mutations.  This is an important component of TCV.  My results came back positive for bRAF.  Just another piece of info that I am taking with me to MSKCC for further evaluation.

TCV does metastisize to the lungs in time.  I have had difficulty finding information regarding this situation and finding that this type of cancer has just recently been given attention via clinical trials and articles.  I have several articles dating back to 2008 regarding this cancer, although research lacks solid prognosis and treatment.  There are two viable resources that have dedicated themselves in exploring prognosis, treatment, and setting more appropriate guidelines in diagnosing TCV.  There have been very little cases diagnosed with TCV although many articles have stated that there may have been numerous patients who have not been properly diagnosed with the TCV criteria. 

I hope my situation has been helpful and insightful to you, although like you and many others with TCV there is a lack of concrete information regarding treatment and prognosis.  The validity and reliability of such information should be taken with a grain of salt, since this cancer is very unique and the diagnosis of patients have been increasing in the past 4 years.  If anyone who reads my story has any information, suggestions, etc., please feel free to respond.

Williamryan said:

TCV

I had my thyroid removed in 2008 with RI 131 followup treatment.  24 lymph nodes were removed from my neck and 12 were positive for papillary cancer.  For the next 4 years, my annual body scan was negative although in March 2012, my body scan was again negative but my thyrogobulin antibodies were very high.  Had a PET scan and revealed four "hot" spots (2 in neck and 2 in chest).  Then had CT scan with resonation to identify sizes, then had fine needle biopsy done on them and results showed TCV.  Papillary thyroid cancer with TCV is resistant to the typical RI 131 treatment as well as chemotherapy.  Because of the unique location of the cancer, radiation is not warranted.  My ENT and Endocronologist conferred with John Hopkins and their recommendation was not to do anything at this time, just monitor the growth through bi-annual PET and CT scans.  John Hopkins stated that Memorial Sloan-Kettering Cancer Center in NYC is conducting research and clinical trials with TCV.  Upon my initial consultation with Dr. Alan Ho (MSKCC) I did not qualify for the clinical trial because my TCV had not progressed enough.  Since then, quarterly blood work was done to monitor the thyrogobulin antibodies, as this can be an indicator for increased activity.  My PET scan for December 2012 revealed some growth, but no spreading.  Although my followup CT scan revealed significant growth, ranging anywhere from 35% to 80% as compared to the CT scan done in April 2012.  In May 2012, I have consulted with a thoracic oncologist surgeon and stated that the cancerous lymph nodes in my chest are too small for surgery at that time, stating that the surgery is quite invasive. 

Initially my ENT felt that surgery on my neck is not warranted since one of the two lymph nodes has attached itself to the scare tissue on my left vocal cord nerve and there may be serious damage as well as increased scare tissue.  Although since my most recent PET and CT scans showing significant growth, my ENT is considering surgery. 

I do have a follow up appointment with Dr. Alan Ho in January for further consultation and recommendations.  Not sure if I will qualify for the clinical trial, but more importantly I need more guidance.  The feedback I receive will determine if I pursue neck and thoracic surgery.  I will be meeting with my thoracic surgeon in February, since the two cancerous lymph nodes in my chest (one at the bottom of my para-trachea and the other is nestled between my right lung and trachea).  These are the two largest, measuring 2 1/4" x 1 3/8" and 1 3/8" x 1 1/8".  I also had my initial biopsy redone to look for bRAF antibodies and mutations.  This is an important component of TCV.  My results came back positive for bRAF.  Just another piece of info that I am taking with me to MSKCC for further evaluation.

TCV does metastisize to the lungs in time.  I have had difficulty finding information regarding this situation and finding that this type of cancer has just recently been given attention via clinical trials and articles.  I have several articles dating back to 2008 regarding this cancer, although research lacks solid prognosis and treatment.  There are two viable resources that have dedicated themselves in exploring prognosis, treatment, and setting more appropriate guidelines in diagnosing TCV.  There have been very little cases diagnosed with TCV although many articles have stated that there may have been numerous patients who have not been properly diagnosed with the TCV criteria. 

I hope my situation has been helpful and insightful to you, although like you and many others with TCV there is a lack of concrete information regarding treatment and prognosis.  The validity and reliability of such information should be taken with a grain of salt, since this cancer is very unique and the diagnosis of patients have been increasing in the past 4 years.  If anyone who reads my story has any information, suggestions, etc., please feel free to respond.

vanderbilt said:

TCV references

Thanks much for your post! I am sorry to hear about your situation.  I've also found that there is not a lot of information about TCV.  In fact, I had not previously read that "Papillary thyroid cancer with TCV is resistant to the typical RI 131 treatment as well as chemotherapy."  I'm trying to compile a list of references on my website, www.myrnacatharsis.com to share any that might be informative to others.  Might you have some suggestions for further references?  They would be appreciated.    All best wishes, Myrna

 

 

Myrna - Like yourself, I have had difficulty finding resources.  Some of the medical / hospital resources that have some information regarding TCV that I have visited are:  John Hopkins University, MD Anderson and google searches.  I have learned that the bRAF antibodies with V600E mutation and thyroglobulin antibodies are important variables regarding the short and long term prognosis of TCV.  If you plug in "bRAF antibodies" in a search engine, there will be multiple resources.  I will visit the website you mentioned.  Keep in touch.  Williamryan.

csm2007 said:

Papillary TCV Survivor
Hello,

Greetings, I can hopefully be a success story for you. I was 34 when DX in Dec 2010 with Hurthle Cell Carcinoma 4.5 cm 33 grams first in the left lobe, then during the second surgery in Jan 2011 to remove the other lobe Papillary Tall Cell Variant 1.1 cm 9 grams was found in the right side and had spread to the tissues and cervical(head/neck) nodes. They also found small but manageable nodules in my lungs, most likely from the Hurthle Cell. I was on the LID for just over two weeks then had 150 mci's of RAI on April 15th 2011. Currently I take 137/150 mcgs (alternating days) of Synthroid and Sorafenib (tumor suppressor.) Although it took many months to get my TG and TSH levels down, I am just over a year out from the last surgery and have no reoccurrence yet. So far, so good! I am treated here in Jacksonville, Florida by 21st Century Oncology / North Florida Endocrine, and have regular 8 week bloodwork to check my progress. If you have any questions I did not cover please feel free to message me. Best of luck to you in your cancer journey....

i need your help locating doctors or getting your experience.

my daughter is 11 years old, she got dignosed two months ago , and she had total thyroidectomy and radion therapy.

the doctors told me that all i have to do is waiting for few months to find out the radiation treatment will kill the cancer cell.

according to my research, TCV is a hard to fix. when i talked to my doctors i had the impression that the doctors were not sure how to treat her.

also, to be identified as TCV, many researchers said different theories.  some says 30% and the other says 50% the cells. 

my doc told me that my daughter my daughter has small area is TCV.  how do you define this? my daughter has two types of cancer?

please help me, GOD be with you all the time. 

livelifetothefullest said:

Tall cell variant papillary cancer

Hi, 

I am new here and just had my first (6 month) post op papillary cancer ultrasound on 12/31/12 which was "suspicious and of concern."  I subsequently had the biopsy of a 9mm x 9mm enlarged lymph node in the thyroid bed where my previous papillary nodule 8mmx 8mm resided.  I had a complete TT with excision of 11  central lymph nodes back in June 2012. Only 1  node was poistive. Because I have Hashimotos and my antibodies for thyroglobulin were so high, my thyroglobulin markers were deemed inaccurate. Carole Spencer at USC does do special lab work where they separate the autoimmune antibodies from the rest but we were waiting to follow a trend. I also get the Tg and antiTg (if I have this right) sent to Quest.

 The biopsy last week was done at HUP in Phila (as I live across the bridge in a jersey suburb).  2 pathologists and the biopsy doc all huddled behind the curtain to read my cells. After a very long wait, the Biopsy Doc said, "All looks good but I'm going to call in the Chief of Path first but I think it's good."  Chief of Path. looks over my cells and the word is "no Cancer but your cells are interesting."  2 days later my Endo gets the final path report and calls to say the hospital called him, "there is cancer." He later mentioned tall Cell variant. I do not hav eth path report. Plan to get it Tuesday as my Endo is away. My Endo told me to schedule surgery.  The first appt. I could get for an Office Visit is first week in Feb. which I am trying to plead to move up.  

 

I am scared to death about the tall cell finding-no little other than the scary stuff posted on-line and here. I am 53 was staged at 3 before this finding.  What is in store for us with Tall Cell Variant Pap. Cancer?  I saw another person here  that posted is going to HUP.  I am sorry others have to deal with this as well. 

I just had surgery on Jan 22nd. I have had several lymph nodes removed, and only the left side of the thyroid removed. The cancer killed the nerve to one side of my vocal chords. The Dr. did not remove the right side, as not to leave me with further damage. The cancer was on the left side. I have a follow up on Feb 21 and 22 with an I123 uptake.Three to four weeks later I will have six weeks of radiation. The cancer was identified as Tall Cell Variant as well. The CT also found tiny noduled in the right lung, too small to treat at this time.

Well, it has been a busy four months. Following surgery I went onto a low Iodine diet for several weeks.Followed by a nuclear iodine capsule to try to kill the right side of the thyroid. Followed by seven weeks of radiation. I just went to Boston for a follow up. A group of three masses on the right side still very evident through an ultrasound. I wasn't expecting this. During radiation, I lost my voice for three weeks. I just got it back. My team of Doctors are meeting to see what is next.

Annie25 said:

What kind of prognosis is this, really?

I found a lump on the side of my throat last fall, had an ultrasound, which found several lumps in and about my thyroid.  They were biopsied and I was diagnosed with papillary.  The surgery was started in February and my surgeon quickly ran into problems.  The cancer had spread all over and after removing a lot of lymph nodes on the left side of my neck and part of my left jugular vein...and the entire thyroid gland, he ended up sending me to a specialist at a different hospital.  A day later I was back in surgery, where I lost the nerve to my right vocal cord and a lot more lymph nodes, but they managed to save my larynx and avoided doing any dissection of the espophogus or windpipe, and when I came around I was told it was TSV.  After another visit to the hospital for haywire calcium levels I was finally give the radioactive iodine.  The scan following the ioidine showed I still had uptake and the general consensus fom the oncologists now is external radiation for 7 weeks.  I am emotionally and physically exhausted from all this and wonder if it is ever really going to end??  It seems like every time there is light at the end of the tunnel the doctors come back with something else.  So far there hasnt been any spreading outside the neck area....but there wasn't a lot in the neck area that wasn't affected I suppose I am not even sure what I amasking, I have just never been so tired and emotionally wrung out in my life as I have in the past 6 weeks.  TY

Annie,

Has your doctors biopsied the lymph nodes for Tall Cell Variant (TCV) and bRAF mutation?  This would be very important for further diagnosis and treatment.  If your thyroid and lymph nodes that were removed DID reveal that TCV and bRAF mutation (positive) is present, this will take you down a completely different path in terms of treatment options.  Thyroid cancer that is TCV and bRAF mutation positive, this cancer is resistant to the typical RI-131 treatment.  Therefore, there are very limited treatment options as there are several ongoing clinical trials.  In my case where the thyroid cancer originally spread to 12 lymph nodes in my neck, the doctors did not biopsy for TCV or bRAF.  After 3 years of good annual body scans, year 4's body scan (with test dose of RI-131) were negative although my thyrogobolin antibodies were elevated.  Hence, a PET scan was done and showed that the thyroid cancer had spread to 6 lymph nodes (3 in my neck and 3 in my chest) as well as a nodule in my right lung.  After further biopsies of those lymph nodes, they were diagnosed with TCV and bRAF positive mutuation.  I had the 3 in my neck removed, severly damaging the left vocal cord nerve.  The 3 in my chest cannot be surgically removed because of anticipated complications.  Therefore, the only treatments available is in the form of chemo pills (Zelboraf and Nexavar), but with limited effectiveness.  I will be starting Nexavar within the next 2 weeks.  Google this information to learn more about differentiated thyroid cancer that is resistent to RI-131 treatment, Zelboraf and Nexavar.  External radiation really does not effect the long term prognosis.  This cancer needs to be treated systemically.  I hope this helps.  Let me know how things go.

Bill

Hi My name is denise i have tall cell thyroid cancer when they took biospys of lymph node one can back positive so i had a radacal 5 hour surgery 12 lymph nodes removed saliva gland 1 par thyroid whole thyroid came back tall cell .Since then i have had 40 biospys total my lymph nodes look like mat cancer in them.6 days in hosiptal with I 131 had to gothe long way no medicine for a month low idione diet. 17 months later going threw the diet with shots body scan and tumor marker blood test to see if im in remission . Can you tell me your story i am a little scared because they say its hard to kill .Denise

I was diagnosed with the Tall Cell Variant of Papillary Carcinoma after having lost my voice completely. My left vocal cord was paralyzed. I had Total Thyroidectomy in August of 2016 and a RAI with 150 mcg i131 in October of 2016. I started out with 150 mcg Synthroid and my levels of TSH were above 5. My oncologist ajusted the dosage twice and now i'm taking 200 mcg on weekdays and 400 on saturdays. I sometimes get rashes that come and go. I understand that a lot of patients get this from the synthroid because of the coloring ( I have never been allergic to anything prior to this ). I just came from the oncologist and he found a lymph node between 4 and 6 mm. He initially said that he could inject alcohol in the node but now says it is safer for me to go with another RAI. I have read many of your experiences on here and i thank you for your testimonies. It helps to know that i am not alone. Has anyone experienced the rashes with synthroid and has anybody gone through 2 sessions of RAI. I am also concerned about my diet. Thank you for replying. Half of this battle is mental and i appreciate constructive and encouraging suggestions.

I am not a doctor but 400 mcg of synthroid sounds way too high...unless you weigh like 400 lbs I don't know why this is so high.  I take 175 but when I was at 185 I had heart palpitations and I was told by my doc that too high dose can cause thyroid storm or a heart attack.  I would go to second opinion about that high dose of 400...it just sounds unbelievably high really.  Does anyone else take that high a dose?

Vanillasky said:

Tall cell variant

hi everyone ! i I'm a new member of your tall cell thyroid. group .. diagnosed with stage 3 in 2016 . Glad I found thos forum . how is everyone doing this year ?

Hi, Vanillasky! Hubby also has TCV, discovered just last month from biopsy of his thyroid glands and lymph nodes. How was your TCV treated? How are you doing?