Tuesday, March 03 2015
Back on the 3rd of Feb, I had to head back down to Sydney for my next PET Scan (click here to read what to expect when you need a PET scan) and the scan showed that there was activity on my thyroid and in my breast/armpit (which is new) but it also showed there were new tumours just under my scar from my ileostomy, and some under my ileostomy as well as the larger mass was now compressing my Kidney.
My doctor saw me after my scan, had said he wanted me back in Sydney on the 9th to be admitted into hospital so they could undergo further tests and start treatment for whatever these tumours were (they were still speculating about what it could be). At this consult I was only told about the breast and the tumour blocking my kidney (I didn't know of the additional stomach tumours or activity in my thyroid).
So first came a team of Endocrinologists, who wanted to chat about my history and asked me about my thyroid and if I had noticed any changes. I mentioned to them that my neck at times feels a bit bumpy and sometimes it feels like I have trouble swallowing or that I can feel like something is pressing on my neck and I am choking.
I told them about my entire medical history and weight issues, and how I have seen some endocrinologists before who seemed more interested in taking my money then actually helping figure out what was wrong.
They told me that my thyroid showed up on my PET scan as an area of interest and that I would be going the following day for an ultrasound of my neck.
I had the ultrasound, and a couple more doctors came in and then they left and were chatting, and came back and told me that they can see a lot of nodules on my thyroid and that there are some enlarged lymph nodes. A doctor confirmed later that day that I have a multi nodular goitre.
They told me "it is probably nothing to worry about but we will do a biopsy to be safe".
The biopsy was the following day and was done in a special room where there was a CT, ultrasound machines as well as a lot of surgical gear. I had a FNA (fine needle aspiration biopsy).
I had to lay flat on the bed with my head tilted back so my entire neck was exposed. The Doctors then re-did an ultrasound to confirm that the lymph nodes and nodules they saw were the ones they needed to biopsy (there was 2 of main concern). They confirmed the lymph nodes were the correct ones and the biopsy proceedure started.
As they were biopsying each side I had to turn my head as far as I could.
They then applied the local anesthetic, which hurt a lot. It is a pretty sensitive and uncomfortable area.
Then they did the biopsies. They had to do several attempts at each of the two lymph nodes to make sure they had the best samples. There was also a cytologist there to confirm the quality of the samples under microscope.
Although they had numbed the area it still hurt and also was uncomfortable. Everytime they penetrated the lymph node and jiggled the needle about it was sending a shooting pain up my jaw, into my ear and into my head. It was like it was hitting a nerve. It was horrible. But as soon as they removed the needle, this went away.
After the Biopsy
After the biopsy was done, I was brought back up to my room and as my neck was so sore I asked for some ice packs to place on my neck. During the night my neck got a bit swollen and irritated, so I had some panadol and applied more ice.
My neck only hurt for a day or two afterwards and I just applied ice the entire time. The ice helped with inflammation and also to relieve the area of pain.
I felt as though I had been attacked by a lymph node sucking vampire!
The Results and What's Next
My results were back the following day (I just had gotten back from my breast biopsy) and was told that it was positive for Papillary Thyroid Cancer related to my FAP and I was just in so much shock I couldn't stop crying.
The doctor sat with me as I called my husband to tell him the news, and she told me that this is the best cancer to have out of all of them it is the most curable when caught early, and she started telling me about the surgery and what it will involve.
I know I shouldn't have been so shocked as when I was diagnosed back in 2010 with FAP I was told then that in a timeline of cancers it would go colorectal and then some people get thyroid, pancreatic and so on. I just always hoped that I was one of the luckier ones with FAP that just needed the total colectomy and that was it.
I am due to have my entire thyroid removed on the 30th of April, then I come back for the radiation weekend about 4-6 weeks after to kill any remaining thyroid tissue.
Stay tuned for what to expect with a breast biopsy and also a stomach biopsy.
I have been given some really useful guides by my doctors about the upcoming surgery and thyroid cancer which most can be found online from the cancer council's website, Another resource I read was or a really informative guide I found useful from Genzyme Australiasia.