After 2 negative biopsies, full path says cancer... now what?!

memoryangel

Hi all - newbie here!

I discovered a lump in my neck the first week of May and was diagnosed with a large nodule that was "almost certainly benign" but was pressing on my carotid, trachea and esophagus so surgery was scheduled for a lobectomy. The fine needle biopsy done before surgery came back negative and then the frozen section during surgery came back negative and I was told by the Dr. that he would be "very suprised" if anything malignant showed up. The week after surgery I went in to get my stitches out and he was suprised to discover that my path report was not back yet so he did some calling and found out that there were some abnormalities so my path was sent to Mayo for a second opinion. A week later on June 12, 2009 I got the phone call from my Dr saying they found papillary thyroid cancer.

Now I have my follow-up appointment on July 2 where we will discuss further treatment options and I have so many questions! From what i've read from various websites [ACS, NCI, ThyCA.org...] I will have to have further tests in order to fully stage the cancer so i'm guessing I will have a Scan? The nurse at the office said we would most likely discuss RAI too? Will i have to have another surgery to remove my right lobe? Has anyone had just the lobectomy without a second surgery? I have a strong family history of other types of cancer so I have seen people go through treatments with varying results... does anyone have any stats [or know where i can find them] on recurrence rates or rates of other cancers after a thyroid cancer diagnosis?

Sorry for so many questions but any answers/experiences and also any suggestions for questions to ask my doctor are very much appreciated!

Thank you -
Christina

jcvolt

Nooo.
Most likely they will recommend removing the rest of your thyroid. If the actual cancer was small you probably don't need to but they usually tell you that you need it out.
Papillary thyroid cancer is very slow growing and many people live to a ripe old age never even knowing they have thyroid cancer. It won't kill you and you can take your time looking into all your options and the consequences of each option. Some people don't do well with a total thyroidectomy and can never get their hormones right after and some just want it out. If it is stage 1 or 2 you shouldn't need RAI that is the latest protocol since it may do more harm than good. If it has spread beyond your thyroid you have a tough road ahead of you but there is lots of support out here.

Tamika30

Christina
Hi,

My doctor noticed a lump in neck back in 2007. I had four biopsies and drainages since then. All the tests came up negative. It was not until April of 2009 after the fourth biopsy that I started having pain and wanted it out. So, I had my first surgery on 6/16/2009 to remove the right side of my thyroid. My doctor was so confident that nothing was there. The following week my results came in and it was indeed cancer (papillary variant follicular thyroid cancer). So they had to do a second surgery to remove the complete thyroid. This whole process is stressful. Right now I have been put on a low idoine diet with no hormones to prepare my body for the radiation idoine this upcoming friday on 7/31/2009. With no hormones and thyroid I just have been feeling real tired and having headaches. I am worried about the radiation, I am not sure of the affect it will have on my body. I go for the whole body scan on 8/06/2009 to see if thyroid had taken up the idoine and to see if the cancer had spread to other parts of my body. I wish you the best of luck.