Medullary W/Lymph Nodes

On 2/2/2007 Theyit wrote:

anyone else have medullary????????????

Hello my name is Dana and I have MTC MENS II. I was diagnosed a year ago this month. I had a neck dissection and thyroidectomy last year.

Recent CT scans and US shows two positive nodes that were missed in my surgery my doctors are not recommending removal at this time they say it will not make a difference in my condition at this time. My calcitonin is slowly rising it is at 7,000 now but they can not find the source at this time . My doctor will repeat the scans every 6 mths until something shows for now all I can do is sit,wait,and pray and that is the worst feeling in the world.I am being treated at MD Anderson in Houston and I have a good doctor, that helps alot. Wish you lots of luck.

                                             Be Blessed, Dana

hi dana.....sorry to hear of your MTC...I'm wring for my friend who was disagnosed in September with MTC also...his Dr's say there"s only one MTC..I beg to differ...from all my reading, I understand which one you are dealing with...his apparently is not the hereditary form..in Dec. he had half the thyroid removed (Tumor)..then tests showed MTC and he went back in for total T removal and 8 lymph nodes, 4 of which were cancerous....he is still having choaking feelings..swelling...great anxiety...synthroid is at a good level...his tumor markers are at 250(is that the calcitonin???)anything under 300 is good???..Can you relate to this??  He is so miserable..feels lumps in his neck..Dr. says it's a salivary gland...WELL>>>>why not do PT SCAN SOONER!!!!!!!..No one seems to commit to a prognosis...this is such a rare cancer...how are you doing today???would you kindly share all of your feelings and experiences with your healing episodes , good and bad...we would really appreciate hearing from you....we are hear for you too.........thank you...God Bless...Robin

On 3/12/2007 Danalew wrote:

 

On 2/2/2007 Theyit wrote:

anyone else have medullary????????????

Hello my name is Dana and I have MTC MENS II. I was diagnosed a year ago this month. I had a neck dissection and thyroidectomy last year.

Recent CT scans and US shows two positive nodes that were missed in my surgery my doctors are not recommending removal at this time they say it will not make a difference in my condition at this time. My calcitonin is slowly rising it is at 7,000 now but they can not find the source at this time . My doctor will repeat the scans every 6 mths until something shows for now all I can do is sit,wait,and pray and that is the worst feeling in the world.I am being treated at MD Anderson in Houston and I have a good doctor, that helps alot. Wish you lots of luck.

                                             Be Blessed, Dana

 

 

Hi,

My daughter (now 27) has MTC.  How is everyhting going?  It's tough having to deal with a cancer that is so rare. 

We are part of an online support group that has several hundred people with MTC. 

I look forward to talking with you.

 Jan 

On 12/31/2007 JannieH wrote:

Hi,

My daughter (now 27) has MTC.  How is everyhting going?  It's tough having to deal with a cancer that is so rare. 

We are part of an online support group that has several hundred people with MTC. 

I look forward to talking with you.

 Jan 

 

Hi Jan...I am so sorry to hear of your daughters diagnosis..it is infact my boyfriend that has the same....he had his thyroid removed along with 8 lymph nodes..4 of which were cancerouus....he goes back to sloan kettering every 6 months for blood work and xrays..ct scan, etc., pardon if i do not use capital letters...it is a wait and see situation...his calcitonin levels went up 40 plus last visit..they didn't seem concerned..he is returning again this month..hopefully nothing has changed...keep in touch...apparently there is no way to treat this...just treat the symptoms...god bless...life is so delicate and unpredictable..take care..robin

On 12/31/2007 JannieH wrote:

Hi,

My daughter (now 27) has MTC.  How is everyhting going?  It's tough having to deal with a cancer that is so rare. 

We are part of an online support group that has several hundred people with MTC. 

I look forward to talking with you.

 Jan 

 

trying to be brave. I has my tt last wed the 3rd. all set to hear and treat the other 2 most common, not medullary.

in seaching medical websites it is not to encouraging.  Is there no treatment? 

I'm just suppose to wait and see if it gets worse..... 

thanks

gretch