Recurrent thyroid cancer

[amela321]

I am a 22 year Papillary Thyroid cancer survivor.  I recently had labs done where my TSH stimulated thyroglobulin level was 23.0.  I understand this practically guarantees a thyroid cancer recurrence.  I had an ultrasound done two days ago, but don't know the results yet.  However, it was one of these deals where the technician had to bring someone else in to "look at something" so I'm guessing this isn't great news either.  Anyway, my questions are the following:  1.  What should the next step be?  2.  I'm assuming there will be a whole body scan at some point.  Are these more accurate if they are done with prior TSH stimulation?  3.  As I've found in my research that the standard of suspecting a recurrence is a TSH stimulated Tg level of over 2, would the fact that mine was 23.0 lead you to believe that I have distant metastasis?

Any insight you could provide would be greatly appreciated.  

[amela321]

Thank you for your good wishes.  I hope you are well.  Are you a Thyca survivor as well?

[ChitChatNine]

i am so sorry I jusf got to read your threads .... I am thinking of you both .... such a shame Tg was not ck'd sooner!!!!!  I asked about that test and was told not a go bcz I have 1/2 my thyroid still there .... you'd think it was protocol for an Endo to ck that yearly with other levels!!!  

Keep us posted ....

I hope you get answers soon (both of you!!!)

C~

[utahmomma]

Hey - don't tell anyone else on the board but I still smoke too.  I know, I know.  

I understand your concern about lung metastases!  That's a concern for me too.

I think that the surgery and RAI would be the way to go 'cause I feel like you - get it taken care of NOW!

Best of everything on the scan next week.  My fingers are crossed for you.

[amela321]

I can certainly understand being worried about metastases.  The bone pain would very much concern me as well.  It's good you're being proactive about things and staying on top of it.  Do you trust your doctors and feel they work well with you?

If anything, I guess I'm worried about lung metastases.  Two years ago, I ran in a 5k but now days I can't imagine running to the end of my driveway without getting severely out of breath.  Before all of this started back up, I was just chalking that down to the fact that I'm a smoker (I know, I know) but now I'm wondering if there isn't something else going on.  I guess the scan next Friday should answer that quesiton if it's the type that still uptakes RAI.  If not, I'll probably insist on a PET scan.

I'd like to get both the surgery and the RAI.  I'd rather try to get this all taken care of while I'm still fairly young and strong rather than have this happen all over again in another 20 years.  

You stay strong too!!!!

[utahmomma]

I had a recurrence in late '06 and had to have RAI.  Recurrence was in my thyroid bed.  Went back for my 1-year WBS followup last November and there was an "unexpected" amount of uptake in my sinus area.  Have also been having bone pain so had a nuclear bone scan recently that showed uptake in the same area.

Went to an ENT for a biopsy.  So far "nothing to be concerned about" but the bleeding in that area continues despite treatment.  I have a followup in a few weeks and may have to see if he will biopsy deeper.

Guess once you've had cancer you are always worrying about metastases.  :-(  It probably wouldn't be so concerning if it hadn't shown up on *both* radiation scans.

Hey, I saw the answer you got on the cancer forum.  Is that what you were looking for?   They always take followup questions too so you can ask away there.


Have you decided on surgery, RAI, or both??  

Stay strong - we're here for you!

Hugs
Utah

[amela321]

I'm sorry you both have been through what you have.  Hopefully you will be recurrence free!  Just make sure you are diligent about your follow ups.  And make sure the person who is reading your lab results know that values are different for people like us than for people who still have thyroids.  I bring this up because it happened to me that my primary care physician failed to realize that my Thyroglobulin level of 23.0 was completely abnormal for me, because it is normal for someone with a thyroid!  

Anyway, sorry to go on about that.  It's nice to meet you both and I wish you the very best of luck.  MJ congratulations on the year clear, that's great!

[amela321]

I didn't realize you had a biopsy.  Is there another possible recurrence?  I wish you the best of luck and hope things turn out well for you.

[ras48]

Hi Amela, I read your post last evening and my heart and prayers go out to you. I am the sister that MJ spoke of and I also lived in the Chicago area for over 20 years.I now live down state Illinois. All of this is pretty new to me although I stuck pretty close to MJ while she was going through her initial diagnosis and treatment. I second the advise of checking with other medical professionals. Keep us informed and be aware we are here if you need us.

[MJ13]

Sorry to hear about your cancer reoccurence.  Going thru thyca at 20 had to be tough.  Where near Chicago did you grow up? I grew up in southern Illinois near Carbondale.  I am a thyca survivor too (papillary).  Officially one  year clear last week!!!  I have a sister who is 12 years older than I am (I'm 47) that just had a TT for the same type of thyca last November.  Hmmm....not hereditary,huh????  Did you by chance have tonsilitis as a kid?  Sometimes back in before the early 70's they used some type of radiation.  

[utahmomma]

I saw your post there.  There are a couple of great doctors on there who have given me some really good advice through my recurrance and the biopsy I just had.

Hang tough.  PM me anytime.

[amela321]

Thanks so much.  I'll definitely hang in there and do what needs to be done.  I'm going to check out that other forum as well.  Thanks again!

[utahmomma]

The only thyroid knowledge I've received has been through the school of hard knocks.  :-)

Yeah - cancer recurrence.  I'm sorry!  

If you don't trust your endo, get a second opinion quickly!   I'm not sure if another surgery is warranted or not to remove the lymph node (and probably the ones near it) but I wouldn't be surprised.   Can you contact the oncology department at your hospital and talk to them or get a consult from an oncologist there?  

Personally, I'd be tempted to give the endo a *BIG* piece of my mind.  This could have been caught years earlier 'cause Tg levels climb pretty slowly.  When a cancer patient gets yearly blood draws the doctors office *must* order the cancer marker tests.  That's the entire purpose of the Tg test.  Argh - how incompetent.  No wonder you don't completely trust this new endo.

Hang tough.  Try calling the oncology department tomorrow and see what they say.  Ask them if surgery is warranted and whether the surgery should be performed *before* the RAI.

Try posting your test results, ultrasound results, and questions to the cancer forum:  http://www.medhelp.org/forums/show/59
It is supposed to be a patient-to-patient forum but there are quite a few doctors on there who answer questions.

Again, I'm so sorry!!

Hang in there!!!

[amela321]

I didn't grow up in Utah.  I grew up outside of Chicago, IL.  The only similarity I see in our stories is I grew up drinking well water also.  

I got my ultrasound results today and they did show a "lesion abnormal in a lymph node".  It was described as hypoechoic, with calcification.  Classic recurrent cancer.  I'm scheduled now for a rhTSH stimulated whole body scan and repeat Thyroglobulin.  I also decided I want another opinion as I don't know that I trust this new endo completely.

As for how often I've had my Tg checked, it is SUPPOSED to be every year, but I've found out that hasn't been the case.  I've gone in yearly and made the assumption that it's been tested along with T4, Tsh, etc... but found out that's not the case....it's only been checked sporadically, every 2 or 3 years.  I'm kicking myself for not being more proactive with this, but after 20 years, I suppose I figured I had it licked.  I sure know better now!!

Again, I appreciate your responses.  You seem very knowledgeable and I and other people here, I'm sure, appreciate you sharing what you know.

[utahmomma]

If you've had a near total thyroidetomy and two rounds of RAI then, yeah, don't waste time 'cause you're going to need another round.  Sorry.  :-(

As for my sisters and me (youngest was 24 and, I, the oldest was 37 when it was all found) - we don't know!  We are in a genetic study but no genetic link has been found yet.  We grew up in central Utah (after the nuclear testing so we aren't "officially" downwinders) but we grew up drinking well water.  Who knows if it was radiation in the water or what - we also lived in a hot spot for Perchlorate (from rocket/aircraft fuel) but it hasn't been established as the link yet either.  

Funny thing is it also affected my daughter who had her thyroid removed when she was 16.  Luckily we caught hers when it was still precancerous (atypical cells forming but not officially cancer . . . yet) but she had a nodule compressing her jugular.

You're about my age so, officially, too young for "downwinders" (from the nuclear testing in Nevada during the 1950s but who knows what filtered into the water???   Did you grow up around Utah too.

I have an interesting link to the SEER (cancer.gov) statistics for thyroid cancer incidents by geographic location:  http://seer.cancer.gov/csr/1975_2004/results_merged/sect_26_thyroid.pdf

Basically these are the (overall) U.S. states/geographic locations with the highest incidents:   Atlanta & Rural Georgia; Greater California; Connecticut; Detroit; Hawaii;  Iowa; Kentucky;  Louisiana; New Jersey; New Mexico; Seattle-Puget Sound; Utah

Who knows why??  Could be genetic (families tended to stay together prior to the invention of modern transportation); could be environmental; could be better detection.  I just know it's maddening!!

How often have you been having your Tg checked??

Hang in there and schedule that RAI.

[amela321]

Thanks for your informative response.  I had a near total thyroidectomy 22 years ago.  I had two rounds of RAI about 3 months apart right around the same time.  I'm not actually sure what the staging was because I was only 20 at the time and was too naive to ask the right questions.  I don't have the medical records available because it was so long ago.  

It was my Tg level that was 23.0, not the TSH.  Up until then, my labs had been fairly stable.  

I'm sorry you and your sisters have had to go through the same thing.  Was there some environmental factor suspected that could have caused this for you and your sisters?  The reason I ask is that I keep hearing how rare this is and yet my next door neighbor had the same thing at the same age as I did.  Now that I hear about you and your sisters, I wonder if we lived near each other!!

[utahmomma]

A couple of questions:
- How long ago was your surgery and what stage was your cancer?
- Did you have a complete or partial thyroidectomy?
- Are you saying your TSH or your Tg was 23.0?
- What have your labs (prior to this) been and have they been stable?
- Were you given RAI after your surgery?

I'm guessing it was your Tg that was 23 which would be indicative of a cancer recurrence (*if* you had a complete thyroidectomy).  Usually a climb in your Tg and TSH are both happening together.  

The protocol now is to have radioactive iodine (RAI) treatment however, *if* you didn't have a complete thyroidectomy to have the remaining thyroid removed first.  A high Tg doesn't mean that the cancer has metastasized - it just means it's back (probably in the thyroid bed).   You'll have a small dose of RAI, a scan, the *mega* dose, then a WBS.  All of this is over a period of about one week.  First you will have to go off your meds and go on a low iodine diet for 3-5 weeks (if your Tg is that high though it shouldn't take too long for your TSH to climb high enough for treatment).

Good news is, it's the best way to treat a cancer recurrence.  No messy chemo, no burning external beam radiation - just a diet that we all grow to hate (but is manageable).

Don't panic - I've been through this once and my sister went through it three times (she had distant metastases).   Hang in there - it's manageable.

Utah
papillary carcinoma '03  RAI '06
three sisters with papillary carcinoma