Meddie?

marsjami27

HI- I am a 33 yr old mother of 2 young boys. I just had a biopsy that found my right 3.5 cm thyroid nodule is "suspicious for a neoplasm and concerning for medullary carcinoma". It further notes that numerous spindled cells and material concerning for amyloid are present. I have scheduled and appointment with an oncologist but cannot get in for at least a week. The ENT (who I had not seen before this) who ordered the biopsy told me that I would need a calcitonin level to determine if this was medullary or anaplastic. I havebeen waiting for 4 days now to get the calcitonin results which are still not back. I am annoyed at our medical system for being so untimely and having no since of urgency in a potentially life threatening situation. As I type I havethis tumor still inside of my neck and am hoping it does not travel elsewhere. If I had to choose between the 2 diagnosis I would love to call myself a meddie at this point in time. Does anyone out there have any thoughts or ideas as to anything I could be doing differently to help expedite this process? Thanks.

nellinoz

MTC
Hi Marsjami27, I understand your frustration. I am a "Meddie" too. Unfortunately the Calcitonin test does take about a week to get the results back, here in Australia anyway. Here there are just a few hospitals that do the test. Is this the only test that has been requested so far? There will be a few more to determine the type of MTC you may have. I am sporadic. I am sure your oncologist will explain all once he gets the results back. I wish you all the best it is not an easy journey and all the waiting is very frustrating especially when you have little ones to consider. I have had 2 surgeries so far and I am looking at a third. Good Luck with everything

marsjami27

nellinoz said:

MTC
Hi Marsjami27, I understand your frustration. I am a "Meddie" too. Unfortunately the Calcitonin test does take about a week to get the results back, here in Australia anyway. Here there are just a few hospitals that do the test. Is this the only test that has been requested so far? There will be a few more to determine the type of MTC you may have. I am sporadic. I am sure your oncologist will explain all once he gets the results back. I wish you all the best it is not an easy journey and all the waiting is very frustrating especially when you have little ones to consider. I have had 2 surgeries so far and I am looking at a third. Good Luck with everything

MTC
Thanks for the reply. I am sorry to hear that you are looking at yet another surgery. I am wondering how this is going to go for me. At this point I do not even know the extent of my disease. How long ago were you diagnosed? Have your doctors been able to give you any kind of prognosis? I think I will be ok with whatever it is god has given me to fight but it is the WAITING and the not knowing that is driving me the most insane.

nellinoz

marsjami27 said:

MTC
Thanks for the reply. I am sorry to hear that you are looking at yet another surgery. I am wondering how this is going to go for me. At this point I do not even know the extent of my disease. How long ago were you diagnosed? Have your doctors been able to give you any kind of prognosis? I think I will be ok with whatever it is god has given me to fight but it is the WAITING and the not knowing that is driving me the most insane.

MTC
I was diagnosed in April 2011. I had total thyroidectomy in April 2011 and left neck dissection, mediastinal lymph node clearance, trachael scraping and esophageal mend in Sept 2011. As you may have guessed from the extent of my surgery my cancer was pretty advanced. Drs have never really given a prognosis all seem to back away when asked directly. But my calcitonin has quadrupled from Sept 2011 post surgery to Feb 2012 and just recently has doubled again. Now they are trying to find where it is coming from that is why I am possibly looking at another surgery. Every case is different though and please do not compare yours to mine. Mine was and still is a very difficult case and to be honest the drs really don't know what they can do next for me. On one hand they say that surgery is the only way to control it and then they say more surgery for me would be too risky.

I wish you all the best and hope that you hear soon to put your mind at ease.
Take care and please let me know how you go.

marsjami27

nellinoz said:

MTC
I was diagnosed in April 2011. I had total thyroidectomy in April 2011 and left neck dissection, mediastinal lymph node clearance, trachael scraping and esophageal mend in Sept 2011. As you may have guessed from the extent of my surgery my cancer was pretty advanced. Drs have never really given a prognosis all seem to back away when asked directly. But my calcitonin has quadrupled from Sept 2011 post surgery to Feb 2012 and just recently has doubled again. Now they are trying to find where it is coming from that is why I am possibly looking at another surgery. Every case is different though and please do not compare yours to mine. Mine was and still is a very difficult case and to be honest the drs really don't know what they can do next for me. On one hand they say that surgery is the only way to control it and then they say more surgery for me would be too risky.

I wish you all the best and hope that you hear soon to put your mind at ease.
Take care and please let me know how you go.

more info
Thank you so much for sharing your story with me. I am sorry to hear that your levels are getting higher. It must be unbelieveably frustrating to know you have something but not be able to find it. I was finally able to find out more about my progression earlier this week. My doctors started by telling me that due to the size of my thyroid nodule (3.5 CM) and my calcitonin levels (1400) that they suspected my cancer already spread. But a CT scan revealed that it does not appear to have spread at all. I sincerly hope this is right. Regardless they consider it a stage II based on the size of the nodule itself. I am scheduled for surgery next week to remove the thyroid and the surrounding lymph nodes. they are taking the nodes to test after the fact to ensure they are negative. I am nervous but am now, for the first time since this started, feeling hopeful. I hope to be able to come back and report that I am cancer free after surgery and I hope to be able to give all newly diagnoses Meddies a favorable story to read. But mostly I hope to defy the statistics and live on. I wish the same for you. I can already see you are a strong person to be sharing your story with me over a year since your advanced diagnosis. I wish you the best. Please keep me informed with how you are doing.