Pregnant and recurrence (help)?

loubada

Hi, I'm a newbee here. Really long story, I'll try to keep short. My wife was diagnosed in '99 at 31 of papillary thyca with hurthle cell, extrathyroidal extension and one node metastisis. Total TT and RAI 2x 100&250 because of persistant Tg of 9 to 14. All scans negative (US, CT, PET, WBS, BS, MRI) She was diagnosed with breast cancer in 2001 with good prognosis and our endo thought we could deal with Thyca later. We ended up with a Dx of Cowdens Syndrome (Genetic predisposition to Thyca, Brca, plus a few more). After 4 years Brca free and stable Tg of about 11 (couldn't find anything to cut out) we were given the OK to try to get pregnant and ran into fertility problems and given 5%-10% chance of getting pregnant. But after 2 years of trying miraculously made it only to find Tg jumps to 21 within 2 months. Endo is stumped and ordering more Ultrasound. What could this be, any ideas out there? This is worrying us greatly. Thanks.

Rustifox

Congratulations on the pregnancy. I'm sorry you are both going through all of this, though; Cowdens is a particularly difficult and rare situation, and I'm sure it has been a worriesome time for both of you.

First, your wife definitely - I cannot stress this enough - definitely! needs to be in the care of a very experienced thyroid cancer endocrinologist - one who literally specializes in only thyroid cancer, particularly one who has repeatedly worked with both hurtle cell and subsequent variants and recurrences.

With even a Tg of 11 (and I am assuming this is her suppressed Tg level? Taken while she was on thyroid hormones?) it is very possible that she has significant disease - most specialists would persist in very actively determining and treating this, being relentless in finding the source, with a Tg level above 2.

Unfortunately, thyroid cancer can and does spread literally anywhere in the body. As you may know, when the cells change to more aggressive variants, they become less I-131/radioactive iodine avid, until they reach the stage where they do not uptake it at all.

At this point, more aggressive treatment becomes very important. I do not mean to worry you more than you already are, but it cannot be allowed to remain dormant in these stages. In some of us, based on our cellular makeup, without appropriate treatment and over time, thyroid cancer can evolve to untreatable variants - there is more information on this in these links:
http://www3.interscience.wiley.com/cgi-bin/abstract/104085527/ABSTRACT?CRETRY=1&SRETRY=0

http://www.medscape.com/viewarticle/536311

http://cat.inist.fr/?aModele=afficheN&cpsidt=14462037

http://www.thyroidmanager.org/Chapter18/18-pathology.htm (continue to read to following pages for specifics on hurtle cell)

http://www.roswellpark.org/Research/Research_Staff/Stoler_DanielL__PhD

When those cells change, there can be a period of time where they are 'undetectable' by both RAI and PET scans - but as they continue to mutate with time, to less 'thyroid like' cell structures (which they can do without changing her thyroglobulin levels - in some cases, for example, anaplastic may not produce thyroglobulin at all), they DO/WILL become PET scan detectable - so a whole body PET scan, using glucose becomes the best option, with even better detection rates proven when hypothyroid or thyrogen stimulated - here are a few articles openly available on the net on this issue:
http://jnm.snmjournals.org/cgi/content/abstract/40/6/986

http://www.biij.org/2006/4/e56/e56.pdf

Your wife definitely needs a whole body PET scan immediately after your baby is born. Until then, it is now also critically important to also keep her TSH in the lower ranges towards suppression - ie no higher than 1.00 or so - for the duration of the pregnancy - unfortunately, a high TSH during pregnancy can definitely harm the fetus, and pregnancy itself often causes rapid rises in the TSH levels.

As such her TSH needs to be frequently monitored - at the very most, every 4 weeks through this time, with prompt increases to her hormone intake as needed. Some women will require double or even triple then normal doses of hormones to maintain proper TSH levels during pregnancy. In your wife's situation, because the higher TSH also acts as "food" for the remaining cancer cells, she needs to be seeing a thyroid cancer endocrinologist as well as a high risk OBgyn.

The same hormonal changes which occur with pregnancy, can and often do also change or stimulate the remaining cancerous tumor growth.

I don't know where you are located, but there are experts who can and will help your wife's doctors on a consultation basis, strictly based on forwarding copies of her files to them - you may want to ask her current doctors to consult with the Thyroid Cancer specialists of MD Anderson, John Hopkins (Dr. Tuttle is recognized for his expertise) or perhaps Dr. Kenneth Ain from the University of Kentucky. Here is Dr. Ain's resume, in case that option is one your wife's doctors are willing to pursue for consultation purposes:
http://www.thyroidcancerdoctor.com/PDFs/Ain_CV.pdf

While Dr. Ain is, of course, unable to address any individual cases or individual circumstances on the following link, serious cases like this can find some generic information on his recently started web group/discussion board, the link is below for you.

For others here, with recently diagnosed 'first treatment' issues, with well differentiate thyroid cancer, like papillary, follicular, or follicular variant of papillary who are reading this, please be aware that Dr. Ain's group often deals with many of the more serious situations encountered with persistent or recurrent thyroid cancer - rare variants, including those that have evolved to become anaplastic; non-iodine avid recurrences, etc - so the discussion group does focus on alot of in depth information, which most of us will thankfully never have to deal with.

Loubada, you should also post the same questions you have posted here to the Advanced thyroid cancer group - this is a 'patient to patient' group, too, and maybe some of the members there can help with their experiences, or even recommendation of 'super-specialists' in your area - here is the information explaining how to join the Advanced Thyroid Cancer group:
http://www.thyca.org/email.htm#advanced

(*For less serious case issues, for others reading this post, you may want to primarily utilize the main discussion boards at THYCA,support group information is here:
http://www.thyca.org/email.htm#thyca )


Loubada, here is the link to Dr. Ain's group - it is free to join, and you may find some information of value posted there (particularly pertaining to allowing this continuing yet significant thyroglobulin level), or may want to compile a generic post for his group, keeping in mind that he cannot, of course, address or suggest specifics for your particular case - if you read through the posts, it will provide some ideas of how to word your posting there:
http://health.groups.yahoo.com/group/thyroidcancerhelp/

I know that this reply is, unfortunately, likely not of much comfort to you, and I apologize for that, but your wife needs to get into some very specialized and skilled care, as rapidly as she can, both for the health of your baby and for her long term well being as well.

That is not to say she has received poor care - she just needs to be followed up very frequently, carefully, and have repeated scans until the source of this thyroglobulin is located and removed, as well as subsequently treated until eradicated.

Any thyroglobulin means active cancer, and cannot be left, as science is still unable to tell us exactly why some forms of even well-differentiated thyroid cancers can evolve, (with less than adequate treatment and time), into anaplastic behaviors. I hope that some of the links may be helpful to you, and please feel free to email me directly if I might be able to help you with some further research and/or information. In the interim, I wish both you and your wife the very best - and I also wish you the very best care, from someone who is completely familiar with hurtle cell and its' patterns. Take care.

Rustifox

Rustifox said:

Congratulations on the pregnancy. I'm sorry you are both going through all of this, though; Cowdens is a particularly difficult and rare situation, and I'm sure it has been a worriesome time for both of you.

First, your wife definitely - I cannot stress this enough - definitely! needs to be in the care of a very experienced thyroid cancer endocrinologist - one who literally specializes in only thyroid cancer, particularly one who has repeatedly worked with both hurtle cell and subsequent variants and recurrences.

With even a Tg of 11 (and I am assuming this is her suppressed Tg level? Taken while she was on thyroid hormones?) it is very possible that she has significant disease - most specialists would persist in very actively determining and treating this, being relentless in finding the source, with a Tg level above 2.

Unfortunately, thyroid cancer can and does spread literally anywhere in the body. As you may know, when the cells change to more aggressive variants, they become less I-131/radioactive iodine avid, until they reach the stage where they do not uptake it at all.

At this point, more aggressive treatment becomes very important. I do not mean to worry you more than you already are, but it cannot be allowed to remain dormant in these stages. In some of us, based on our cellular makeup, without appropriate treatment and over time, thyroid cancer can evolve to untreatable variants - there is more information on this in these links:
http://www3.interscience.wiley.com/cgi-bin/abstract/104085527/ABSTRACT?CRETRY=1&SRETRY=0

http://www.medscape.com/viewarticle/536311

http://cat.inist.fr/?aModele=afficheN&cpsidt=14462037

http://www.thyroidmanager.org/Chapter18/18-pathology.htm (continue to read to following pages for specifics on hurtle cell)

http://www.roswellpark.org/Research/Research_Staff/Stoler_DanielL__PhD

When those cells change, there can be a period of time where they are 'undetectable' by both RAI and PET scans - but as they continue to mutate with time, to less 'thyroid like' cell structures (which they can do without changing her thyroglobulin levels - in some cases, for example, anaplastic may not produce thyroglobulin at all), they DO/WILL become PET scan detectable - so a whole body PET scan, using glucose becomes the best option, with even better detection rates proven when hypothyroid or thyrogen stimulated - here are a few articles openly available on the net on this issue:
http://jnm.snmjournals.org/cgi/content/abstract/40/6/986

http://www.biij.org/2006/4/e56/e56.pdf

Your wife definitely needs a whole body PET scan immediately after your baby is born. Until then, it is now also critically important to also keep her TSH in the lower ranges towards suppression - ie no higher than 1.00 or so - for the duration of the pregnancy - unfortunately, a high TSH during pregnancy can definitely harm the fetus, and pregnancy itself often causes rapid rises in the TSH levels.

As such her TSH needs to be frequently monitored - at the very most, every 4 weeks through this time, with prompt increases to her hormone intake as needed. Some women will require double or even triple then normal doses of hormones to maintain proper TSH levels during pregnancy. In your wife's situation, because the higher TSH also acts as "food" for the remaining cancer cells, she needs to be seeing a thyroid cancer endocrinologist as well as a high risk OBgyn.

The same hormonal changes which occur with pregnancy, can and often do also change or stimulate the remaining cancerous tumor growth.

I don't know where you are located, but there are experts who can and will help your wife's doctors on a consultation basis, strictly based on forwarding copies of her files to them - you may want to ask her current doctors to consult with the Thyroid Cancer specialists of MD Anderson, John Hopkins (Dr. Tuttle is recognized for his expertise) or perhaps Dr. Kenneth Ain from the University of Kentucky. Here is Dr. Ain's resume, in case that option is one your wife's doctors are willing to pursue for consultation purposes:
http://www.thyroidcancerdoctor.com/PDFs/Ain_CV.pdf

While Dr. Ain is, of course, unable to address any individual cases or individual circumstances on the following link, serious cases like this can find some generic information on his recently started web group/discussion board, the link is below for you.

For others here, with recently diagnosed 'first treatment' issues, with well differentiate thyroid cancer, like papillary, follicular, or follicular variant of papillary who are reading this, please be aware that Dr. Ain's group often deals with many of the more serious situations encountered with persistent or recurrent thyroid cancer - rare variants, including those that have evolved to become anaplastic; non-iodine avid recurrences, etc - so the discussion group does focus on alot of in depth information, which most of us will thankfully never have to deal with.

Loubada, you should also post the same questions you have posted here to the Advanced thyroid cancer group - this is a 'patient to patient' group, too, and maybe some of the members there can help with their experiences, or even recommendation of 'super-specialists' in your area - here is the information explaining how to join the Advanced Thyroid Cancer group:
http://www.thyca.org/email.htm#advanced

(*For less serious case issues, for others reading this post, you may want to primarily utilize the main discussion boards at THYCA,support group information is here:
http://www.thyca.org/email.htm#thyca )


Loubada, here is the link to Dr. Ain's group - it is free to join, and you may find some information of value posted there (particularly pertaining to allowing this continuing yet significant thyroglobulin level), or may want to compile a generic post for his group, keeping in mind that he cannot, of course, address or suggest specifics for your particular case - if you read through the posts, it will provide some ideas of how to word your posting there:
http://health.groups.yahoo.com/group/thyroidcancerhelp/

I know that this reply is, unfortunately, likely not of much comfort to you, and I apologize for that, but your wife needs to get into some very specialized and skilled care, as rapidly as she can, both for the health of your baby and for her long term well being as well.

That is not to say she has received poor care - she just needs to be followed up very frequently, carefully, and have repeated scans until the source of this thyroglobulin is located and removed, as well as subsequently treated until eradicated.

Any thyroglobulin means active cancer, and cannot be left, as science is still unable to tell us exactly why some forms of even well-differentiated thyroid cancers can evolve, (with less than adequate treatment and time), into anaplastic behaviors. I hope that some of the links may be helpful to you, and please feel free to email me directly if I might be able to help you with some further research and/or information. In the interim, I wish both you and your wife the very best - and I also wish you the very best care, from someone who is completely familiar with hurtle cell and its' patterns. Take care.

For newer members here, I needed to clarify an issue in my reply above, so as not to confuse those who have been recently diagnosed, and are still undergoing initial treatment(s).

"Any thyroglobulin means active cancer," is only applicable AFTER total or completion thyroidectomy, followed by I-131/RAI treatment as required, to eradicate initial thyroglobulin levels.

Remnant or remaining normal thyroid tissue will also cause thyroglobulin levels to rise, so until ablation, and/or treatment has eradicated all 'normal' thyroid tissue, as well as (hopefully) any remaining thyroid cancer cells, then sometimes thyroglobulin is caused just by the normal tissue. Just to clarify - so if you just had your surgeries, or have just had an I-131 treatment dose in the past few months, it may take up to a year for your initial thyroglobulin levels to decline and/or disappear. Subsequent thyroglobulin rise is worriesome, whether it continues, or reappears. After all treatments have occured, a persistant or rising thyroglobulin level is indicative of active thyroid cancer.

Unknown

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