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5 months post op (papillary carcinoma)..new nodule appeared. Worried

Leighann1212's picture
Posts: 1
Joined: Jun 2013

12/2012 I had robotic surgery to remove a thyroid nodule from the isthmus. The rest of my thyroid looked ok, so the only part that was removed was the nodule on my isthmus. I was told that I was at very little risk of it being cancer; in January at my follow up appointment I was told that I had papillary carcinoma. My doc felt very confident in his decision of not removing my entire thyroid gland. My first reaction was take it out, remove any trace of my thyroid...but he assured me that he took the best course of action and that he did not feel that the cancer would return. So we're watching it with regular ultrasounds. In the meantime I stopped taking synthroid to see how my thyroid would function since I was never diagnosed with hypo. My body feels like it's turning against me. Weight gain was almost immediate...but that's not the scary part. Today my doc calls (on a Saturday!) with the results of my first ultrasound since surgery. They knew I had one little cyst, now there are 3 in my right lobe and a small 8mm nodule in my left lobe. Any advice or insight would be greatly appreciated. I'm very worried. 

Posts: 23
Joined: Apr 2013

I have recently found out that even though they say the return of cancer is not likely, it's much more so than they truly say. I was told the same thing, had TT in 2008, pap carcinoma, and parathyroid removed. I recently found out it came back, had RAI treatment in April of this year and now I am awaiting blood test and ultrasound for next month because we believe it's not gone. The next step is another surgery and then RAI afterward. I have been told th ebest treatment is TT, then RAI treatment. Again, reading around here I have still seen it return after that. Keeping you in thoughts and best of luck. And remember, always follow your instincts and if you aren't happy with your Dr get a second opinion. 

Posts: 1
Joined: Jul 2013

Hi Leighann, 

I had the right side of my thyroid removed in 2008 which had papillary cancer.  I had the left side removed a couple of months later which was benign. Since then I have had four subsequent surgeries and radioative pills to try to get rid of the cancer.  Evidently I have a very invasive kind of cancer and am not able to have any more surgeries. I am now in a trial program at the University of Chicago since January of this year. It involves taking two medications. My first CAT scan showed the cancer in the left side of my neck and in my chest had gone down one centimeter; the second CAT scan showed that there was no reduction of size but no growth, so that was good news. I have another CAT scan coming up in about three weeks and am hoping for a further reduction of the tumors. If you live anywhere near Chicago, I would recommend that you contact them to see if you can get into this trial program since they are the only hospital in the United States that I believe is conducting this test. I have constant diarrhea as a result of taking the pills and still do not have any energy but here 5 years later, thanks to God and the prayers of my friends, I am still alive and kicking at the age of 76. 

I found out after a lot of research that thyroid cancer is one of the most prevalent cancers now and a lot of people have it and don't even know it. I really didn't have any symptoms except the fact that my internist noticed that I had a lump in my neck. I also had a paralyzed vocal chord as a result of the surgeries which was corrected by the insertion of a clip which allows my voice now to be normal.  I don't know if I will be able to find this chat room again, so if you would like to contact me to talk more about this, please do so at theshadow_37@hotmail.com.  I will pray for your recovery and hope this has helped you a little.

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