The whirlwind that happened next

My work days are Monday to Wednesday and so the girls and I were having a relaxing morning playing before a play date in the park with friends when John called with the news. Adenoid Cystic Carcinoma (ACC). It is low-grade (slow growing) and that is good news.

Of course it didn't sink in, I'm not entirely sure it really has, even now. It is still very surreal as I have no symptoms and feel just fine.

John had done a very brief search for some information as neither of us had heard of it previously, and it wasn't great news. I sent messages to my family to see who, if anyone, was awake and talked first to Hannah and then to Mum and Dad  (and everyone else and John's family too as the day went on). They too did a lot of searches to get more information. My neighbour, and good friend, Claire ran across the road to give me a hug and see what she could do.

The girls were a great distraction and didn't give me time to look into it further or think about it too much, so off we went to play in the park. In the afternoon it was Elle's swimming lesson and we went out to dinner following that and tried to process it all. John had to work on Saturday and did more reading. He definitely felt the weight of the diagnosis before I did! He finished late, 11pm, came home and filled me in, we cried.

The following weeks were a whirlwind of tests and appointments.

The next Monday (1^st August) we had an appointment with the doctor who confirmed the diagnosis and called the hospital for an appointment with a head and neck surgeon / oncologist. John was already onto it and we had chosen the surgeon (there are three) we would most like (though honestly they are all brilliant and we would have been happy with any of them). An appointment was secured for the following Thursday but John used his connections and we were able to get an appointment the following day. The surgeon squeezed us in. I was grateful for this as it was all now becoming real for me too.

The appointment with the surgeon was great. Our surgeon, Dr Sydney Ch’ng is brilliant and I feel lucky to have her. She talked us through everything (it is very rare – 2/3 in a million, I am young to have this, we do not know what causes it etc etc). The tumour is in my left parotid gland. The main facial nerve runs through this gland. She examined my face, neck, throat and lymph nodes and all looked good so far (it was not protruding into my throat, no enlarged lymph nodes, no facial paralysis) but the mass felt bigger than 13mm, possibly as a result of bleeding following the biopsy. Surgery is required to remove it and is tricky because of the close proximity to the facial nerve.

Following the appointment I had blood taken, the following day I had CT scans of my head and neck, the following week I had MRI scans of my head and neck.

Here is the first of my war wounds.

The CT scans showed that no lymph nodes have been affected which is really good news and hopefully means it has not spread. The MRI scans showed that the tumour is well demarked and not too close to the facial nerve. It also showed no spread to the nerves.

Here are two of the MRI images - see that white circle on the right, that's the tumour.

This image shows its size. 16mm here, bigger following the biopsy.

The following Friday night Claire babysat so John and I could go out for dessert and talk some more. John had printed a LOT of medical information and papers about ACC and it was pretty depressing reading. More on that in the next post.

The following week the head and neck team met to discuss my case with all the test and scan results so far. Here they discussed a plan for surgery and treatment.

Meanwhile our families and friends were rallying around. We had treats, flowers, care packages and meals delivered. Visitors, calls and messages of love and support and hope. It really was incredible and we felt loved!

The diagnosis

One of the most common questions I am asked is what lead to the diagnosis and how I found it, so I thought I'd start with that.

I have a small lump behind my left ear, in the top of my neck. It's not very big. I noticed it a while ago, didn't think too much of it (with two young girls who spend three days a week in daycare colds and such are a common occurrence in our family and I assumed it was an enlarged lymph node), but I did mention it to our family doctor at an appointment following the birth of baby Kate. The GP examined me and checked surrounding lymph nodes and told me to monitor it and return if it grows in size or doesn't go away.

It didn't, though I didn't think it had grown, and so mentioned it again at another routine appointment with baby Kate.  Now I should mention here that we have a really great family doctor. John did his GP rotation with him as a medical student and liked him so much that we registered with him as a family. I am glad we did. At the appointment he examined me again and thought it might have grown slightly. He wanted to check it out to see what it was and so arranged for me to have an ultrasound. This happened a few days later (21st July) and off I went with the girls. The sonographer was great, so great in fact that after we had left Elle said she wanted to be a sonographer when she grew up (she usually wants to be a tooth fairy)! The sonographer said it didn't look good and the doctor would want a biopsy. Sure enough, a few hours later the doctor called and said he was very concerned. The ultrasound showed a lump about 13mm in size, it had a blood flow and signs of calcification. None of these are good signs. He had me booked in for a biopsy three days later. He also called John. Once John got home for the day he took a good look at the ultrasound pictures and was also concerned. At this stage I wasn't too concerned. Nothing to worry about yet.

The biopsy was on Monday morning. I watched on the screen as they stuck and jiggled a needle around in my neck. Afterwards I felt like I had been to the dentist as half of my face was numb. Nothing to do now but wait. Results take about 5 days. The pathology was done at Royal Prince Alfred Hospital in Sydney (RPA) which is where John works and so each day he called down to see if the results were in. They took 4 days and on Friday morning John called - the results were in.

The diagnosis was Adenoid Cystic Carcinoma (ACC).