Question On Soft Nodule...

I had a TT on May 9th.  Although I had a positive biopsy prior to Surgery...they kind of did a Pause during my TT surgery as the Surgeon could not actually find cancer..or so he thought...so the lab..within 1/2 an hour..confirmed it was cancer..so they proceeded and removed the rest of my Thyroid.  It was a small nodule...only one...   .9 cm (less than 1). 

I was told by the Surgeon after Surgery...it was a "soft nodule" not hard.  No one seems to be able to tell me exactly what this means.  After the TT, the local lab patholgist said I had run of the mill Papillary Carcinoma....but my original biopsy....said it showed signs of "tall cell"...so  it was sent for a 2nd opinion and came back as definitely being "tall cell".  They think it was fully encapsulated....and they biopsied three Lymph Nodes..came back negative.  Doing my RAI next week.

 Question..anyone heard of a "soft nodule"?  Cannot really find a reference to this anywhere...especially for tall cell.  Also...this nodule was first found in 2006....was biopsied at the time....came back negative...and was re-biopsied in 2008 and came back positive.  The size estimate in 2006...from an ultrasound and MRI...was 1.2 cm...it ended up being .9cm when removed with total TT in 2008...so it apparantly was not growing very much..if at all....which is not what I read when it pertains to tall cell.  Just checking to see if anyone has heard of a soft nodule before. 

I can't answer for sure, but my nodule was calcified.  So were the two lymph nodes that were found to be cancerous and were removed.  In fact, my core biopsie was very difficult and as the dr said "becoming very dangerous" because of the calcification stage.

That may be what he was refering to.  Calcification is a sign of a cancerous nodule.

I don't know much about the soft nodule, but I do have Tall Cell.  Did your doctor seem to be concerned about that?  I posted a couple of times regarding tall cell papillary and there doesn't seem to be many of us out there.  I'm curious as to what your doctor said about further treatment.  It would be nice to know what other doctors are saying about our particular cell (which can be resistant to treatment).  Thanks, Tara

Tara,

 I really do not have any more information....I probably received more info from reading this board and your post than my Dr. has given me.  Keep in mind...my original biopsy said: "may be tall cell - not sure".  My initial pathology after TT said: 100% papillary...not one word about tall cell. The pathologist told my oncologist on the phone he was "confident it was not tall cell".  Then....only with in the past week...did I find out from University of Penn 2nd opinion: it is clearly tall cell. 

My doctors say the same as others: well...we would have removed your thyroid either way....we checked 3 lymph nodes FNA and they were negative....and now that we know it is tall cell...we are clearly going to do RAI...no doubt about that.  I am going to see my Endo and be more specific as I have not actually had an appt with him yet now that "tall cell" has been confirmed.  The surgeon (not my Endo..different doctor)...said tall cell or not..it is coming out...so he was not much help.  My Endo..I am going to ask him how many times has he seen tall cell, how are we going to treat differently, etc.  I know he was not 100% sure I actually was going to do RAI...he kind of said he would if I wanted it....my tumor was so small...but once he saw tall cell - he marked the report: schedule for RAI...so that is probably what he going to tell me. 

 I stated in my initial post....due to my pathology mess up on the post TT report...I wonder if there is more tall cell than we know...but it is not recognized by alot of Pathologist..they just think it is regular Papillary??  just a guess.   

 I would point out...on my original needle biopsy which was "inconclusive" on tall cell..they did a 2nd opinion on their own..sent it to another lab to see what they thought..and they both said: could be tall cell....but we are not certain...  They seem to be say at the time - some cells look like non-tall cell..some look like tall cell. It was not consistent. 

 So...I am not much help.  I would go see an expert anywhere in the US...that is if I could actually find someone who is a tall cell expert...so far...have not found anyone who specializes in tall cell.  Any further info appreciated.  I am taking RAI this week...just do not know dosage. I am going to ask the nuclear medicine Dr (who determines the dosage) what he knows about tall cell..and will let you know...  My oncologist does not know alot about it - but is going to try and find out more info when he gets back from vacation on Monday....so I am trying all angles!

pinnacle - It sounds like you are doing all the right things.  It's good that you are questioning the "tall cell" variant of the papillary cancer.  From the research I have done and also read on this board, 'tall cell'is resistant to RAI sometimes, it is more difficult to diagnose (probably why your needle biopsy did not show 'tall cell'), and tends to reoccur and is aggressive.  I had heard there was one specialist in the country (USA) who deals specifically with tall cell.  I see my oncologist for a second opinion on 6/18 and see what he knows.  He's the type of doctor who will do research on the questions I have and advise me. My endo says she has only had ONE other person with 'tall cell.'  I will share my doctor's advice with you and others on this board on the 18th.  Please keep me informed with your situation.  Maybe all of us out here with 'tall cell' can be great informants for one another.   By the way, I had 150 dose RAI and went hypo with LID in preparation..  My thyroglobulin still shows "activity" (which scares me) so my endo lowered my synthroid dose to 100 to see if that helps. Thanks-Tara 

Tara,

 let me know what you mean by thyroglobin showing activity if you do not mind.  All I know is...my thyroglobin levels and other thyroid levels were perfectly fine prior to my TT...but they of course are not out of whack as I have no thyroid and am not on any medication (3 + weeks since stopped taking cytomel briefly after surgery)..never took anything except cytomel..which the surgeon gave me after TT.  I assume I do not have much to monitor until I get thru RAI and synthroid...but maybe I am wrong!  While I had a thyroid...blood work was normal and no medication was required....my nodules/cancer were found on an MRI....had no symptoms.  In fact...no Doctor was able to actually find my nodule by feeling and pressing my neck..could be because it was a little soft! 

I meant to say in the above: "now out of whack" - not "not our of whack" sorry about that.

Tara,

I looked up my thyroglobulin antibodies level....

 when I had a thyroid...it was less than 20...reference range of acceptable is less than 41.

a month after thyroid removal..and after 2.5 weeks of no cytomel (never went on synthroid..ever)...still shows  thyroglobulin antibodies of less than 20...reference range is less than 41.  So...it does appear to be unchaged.  It my T3 and T4 levels which are all now way out of range (obviously). 

Note: it states "antibodies" on both tests..after thyroglobulin...trying to figure out what all this means..by active..assume that means over the reference range?

Any experiences you have...or anyone else..is greatly appreciated!

Pinnacle - before my TT, my throglobulin level was something like 5,000 (seriously)!  It was WAY off the chart.  My understanding now that it is supposed to be zero/undetectable.  Maybe someone can clear this up.  I certainly will ask my oncologist this coming Wednesday.  I have read so much and looked at so many numbers that I'm totally confused at this point.  My endo said if my level was above 0 that it showed "activity"---meaning active cancer cells.  I thought it had to do with 'tall cell' because I've read so much about it being hard to cure (maybe even not curable).  That's why I'm looking for a specialist who specifically deals with 'tall cell.'   I don't know why it's so difficult to get information on this, but one poster on this board said that 'tall cell' is a fairly recent discovery of the variant of papillary ThyCa.  I'm at the point where I'm totally confused and overwhelmed with the information.  Can anyone make sense of the numbers?   Thanks and God bless!  Tara

Tara,

It appears...since I only have a thyroglobulin antigen reading....and no actual thyroglobulin score...post TT....I can conclude nothing on my blood test.  All my post-TT blood test says is that my thyrodlobulin antigen reading is less than 20.  No actualy number is given for thyroglobulin....so I will have to start asking questions.  In theory...they thyroglobulin reading should go to 0....after a TT...but it also says (on the internet anyway) that you can not really get a reading on actualy thyroglobulin level until after the RAI..which I have not done yet.  Plus..the antigen may stay with you for awhile...so I guess I can really tell nothing at this time...but I understand after my RAI...they thyroglobulin needs to be monitored..and should be at 0 (in an ideal situation).  Appears you know most of this...just trying to make sense of my latest round of test. 

 

Will have to ask if they can start monitoring the actualy thyroglobulin level....  I did have a number of 22 for this prior to the TT....but right now..that really does not mean anything....obviously.  I guess prior to TT a low number is better...but it appears most folks who have thyroid cancer can still have a low thyroglobulin score....but some do not....