Watch And Wait..Watchful waiting!

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RE: Watch And Wait..Watchful waiting!

by Jason1 on Sun Mar 19, 2017 08:05 PM

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I don't understand why my name has been mentioned In the last several messages in regards to Tg levels, or whatever. I do not recall speaking of this in any great detail, in any of my postings. I created this thread to discuss with others taking the "Watch and wait".."watchful waiting" approach. I don't mind talking about these other things..I just don't recall bringing it up. Quite frankly I don't care what my numbers are at this point. I'm feeling great ( except for my broken leg ) and have no intention of changing my alternative to conventional treatment. It's working, so why change? I can't predict the future, but one thing I know for certain, I will never have Thyroid surgery, under ANY circumstance!

RE: Watch And Wait..Watchful waiting!

by butterfly501 on Mon Mar 20, 2017 05:36 AM

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On Mar 19, 2017 11:17 AM Brenda059 wrote:

I have never heard of Tg being used to measure tumour activity in someone who still has his/her thyroid ... and his/her tumour. It would be hard to see how the measurement could be of any benefit - but I've yet to read all the links in the thread. I have had TT without RAI and still have detectable Tg. I gather that normal values for Tg after TT without RAI are not known, so I do not see how there could be relevant values for those with intact thyroids.

I'm so sorry to read of your metastases, ToddlerFather, and I hope and pray for a good outcome for you.

Regarding Jason, for anyone reading this thread, the 'shrinkage' he reports is 0.3 cms, I believe, from what he has posted before and such a minor variation in size in a 2+ cms lesion could simply be technician error or differences between machine being used. As far as his claim that his cancer has not spread, realistically, this is not possible to know. TC grows slowly and, even if Jason has had whole body scanning, spread may be too small to see. I hope he is well but whether he is cannot be as definitively known as he has implied it can.

I just wanted to comment on Jason's claims since those new to the board may not be fully versed yet and it is important to be fully informed. Those of us who have chosen treatment are presented by Jason as mindless fools "jumping through hoops", rather than as the thoughtful, intelligent people that many of us are.

Hi Brenda,

Just to shed some light on Tg values (with or without RAI); there are no "normal" values. The "ideal" is undetectable but some people never have undetectable Tg, so then the "ideal" becomes stable Tg.

Some people with mets (especially in the lungs) are managing Tg in the 500s with the hopes of stability in that measure. 

No evidence of thyroid tissue would be ideal but, for many, stable Tg levels over time is the realistic hope.

Ultimately, for those of us treated for thyroid cancer (RAI or not) there is no specific Tg number that is "normal". It really is case be case.

RE: Watch And Wait..Watchful waiting!

by Brenda059 on Mon Mar 20, 2017 12:43 PM

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@Butterfly: That's true but where Tg has been undetectable, or low, the threshold for concern seems to be 2.0ug. At least that's when I gather those in the US start to look for evidence of disease. For non-irradiated patients there is yet to be a threshold for concern although, of course, rising Tg in the presence of stable TSH would be call to action.

RE: Watch And Wait..Watchful waiting!

by butterfly501 on Mon Mar 20, 2017 09:52 PM

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On Mar 20, 2017 12:43 PM Brenda059 wrote:

@Butterfly: That's true but where Tg has been undetectable, or low, the threshold for concern seems to be 2.0ug. At least that's when I gather those in the US start to look for evidence of disease. For non-irradiated patients there is yet to be a threshold for concern although, of course, rising Tg in the presence of stable TSH would be call to action.

In my personal experience, if my Tg ever starts to rise from the .1 it is currently, I will be taking measures to find the source. I would not wait around for it to rise to over 2. If it starts to go on the rise after years of remaining at .1, there's a problem. My personal "threshold for concern" is any increase in my Tg.

People who have not had I-131 should also have undetectable or very low detectable Tg within the first few months of TT. It's what we/they hope to see. If Tg levels remain "high" I would think, at the very least, an RAIU would be in order. It's very possible that the meausure is coming from remnant cells in the thryoid bed (which is the normal outcome after initial I-131 ablation).

RE: Watch And Wait..Watchful waiting!

by dinparadise on Tue Mar 21, 2017 02:47 PM

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I've been watching this discussion with great interest.  I totally understand those who decide to "watch and wait".  I get it because it is true, in most cases but not all, that thyca is a very slow growing cancer.  It is also true that for many, the simple surgery and one round of RAI puts any end to the cancer and you live happily ever after with a small pill a day.  But please don't lose sight of the fact that it is CANCER.  As I think I've stated before, we determined I had my cancer for 8-10 years before I had my thyroid removed.  I can't help but wonder what would have happened if I had found it earlier and had my thyroidectomy on a more timely basis.  For because of my iodine resistance which I didn't discover until I started treatments, I have had 3 reoccurances; 2 neck dissections and 33 rounds of radiation.  After being clean for 5 years, I now am confronted with lung nodules which are likely metastatic thyroid cancer.  We don't know because I am refusing a biopsy because the six nodules are still small and a biopsy would cause my lung to collapse.  IF it is indeed my 5 experience with thyca since 2008, I too am looking for alternative treatments as chemo is my only choice right now.  

I also have a friend who I met on this board 9 years ago who is experiencing much worse than even I am.  Chemo has actually extended her life, yet she is still suffering from THYROID CANCER and its metastisizing disease.

My only point in this is to those who are avoiding any type of treatment.  It's true you won't have any physical signs of the CANCER.  But that doesn't diminish the fact that cancer is growing within you.  I understand you not wanting to start the treatments because then you will detect side effects to the treatments.  But imagine if I had done nothing; which I did consider....I probably wouldn't be here today to share my "two cents" with you.  We all make our own choices.  I know that as much if not more than all of you.  Just know it IS cancer.  It IS growing within you.  People DO die from thyroid cancer.  

Good luck to all of you no matter your decision!

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