More surgery...

Thanks for the well wishes everybody.

 I just got off the phone with the surgeon's nurse. My PET scan will be done next week and as long as it does not show mets anywhere else we will proceed with surgery. After meeting with the oncology and tumor boards at the teaching hospital it was recommeded that I have a bilateral dissection done. They can almost guarantee that I will have a temp trach coming out of surgery and peg tube. I am beyond terrified at the moment. Both of these were mentioned as possible complications when we reviewed everything last week. He said that the board of oncologists are very concerned and feel that treatment needs to be incredibly aggressive.

 I met with an oncologist that is completely outside the group yesterday just to see what he says. He basically reassured me that I could not have a better surgeon and that what he recommends would be what he would do for a family member or himself if in the same situation. He also said that if the PET scan shows mets that my cancer then becomes labelled in uncureable and that I should NOT go through with the surgery. He also said that historically thyroid cancers do not respond to chemo but do radiation so he would recommend an agressive radiation plan.

 I am to the point now that I hate talking with doctors because I never get any good news. This surgery will land me in ICU for at least 3 days and probably in the hospital for up to a week.

Did I mention I am getting married in 85 days and will now most likely have the trach and radiation marks for my wedding? I have said through this whole thing that the last thing I wanted to do was move my wedding date. I am now seriously considering it.

Hi Survivor2Be - i am very sorry to hear about your situation, and i hope your pet scan next week at least brings some good news.

do you know if you had a particular variant of papillary cancer? maybe that can explain why it is behaving so aggressively? do you know what your tg level is?

I had my tg levels checked after I had my scan done a couple of weeks ago. The doctor said that my levels were well under the supressed level. That is why between the scan and the low levels we were fairly certain that the ultrasound was going to show some scar tissue and that was it.

 My first path report showed the pap cancer on the right side and also a nodule in the lymph node. The remaining thyroid tissue also came back as an undifferentiated cancer that was widespread throughout the thyroid as well as on the lymphnodes removed. There were clean surgical margins and the lymphnodes above the infected ones were also free of disease at the time.

I continue to be told by every doctor and specialist I see that this is a very unusual cancer. I suppose we will know more some time after the 5th when it can be removed and further path studies done.