The Plan – Part 1

Today brought our post-op appointment with Dr S to talk brass tacks.  He has been very reluctant to discuss the heavy stuff over the phone, but he has certainly been busy on my case.

But first, a bit more on my new friend Blaster.  The pathologist got up close and personal with her under the microscope.  There are four main types of ameloblastoma – cystic, solid, soft tissue and malignant – and my girl’s the solid type.  The pathologist does not think she is malignant. What she does have is “concerning characteristics”.  She “exhibits basaloid features with evidence of apoptosis and occasional mitoses” but “unequivocal malignant features are not observed”.  Once we part company, she’ll be finely sliced and diced just to be sure.

Here’s a picture of her when we first met.  She’s in my left posterior mandible which, on the x-ray, is the bottom right hand corner. (Ignore the black pen line. Dr S was mortified one of his students has drawn on poor little Blaster.)

Dental x-ray - 9 May 2011

But, of course, the question is what to do about her?  There is really only one option, he said: resection.  The entire tumour must be surgically excised.  Even though she is solid, her borders are not perfectly defined and a margin around her must also be removed.  That’s 1cm give or take.

Here is Blaster again in technicolour.  She is ringed in turquoise.  She extends further than is obvious on the first x-ray, indeed into the soft tissue below the second back molar.

Dental x-ray with mark up - 9 May 2011

The approximate borders of the resection are in pink.  Yes, ouch.  It’s all got to go.  The soft tissue, the jaw bone (such as it is), the nerve that allows me to feel the left of my lower lip, another of the back teeth.  The further back of the two teeth I have circled, known affectionately as mobile tooth 37, was removed during the biopsy.  Mobile because her roots had been eaten away and she had the wobbles.  So one down, one to go.

Then comes the reconstruction.  There’s not a lot of bone left now that Blaster has had her fun.  They will need to insert a titanium plate to hold me all together and graft a bone from either my hip or fibula (lower leg).  At some later stage, he said, they can refine here and there, implant teeth or fix up the symmetry of my face.  Luckily, as Deb pointed out, my super model days are already over.  Phew, one less thing to worry about there then.

The good news is that, contrary to what seems to be the experience of the American kids on my facebook group, this should not be long and drawn out.  It’s likely a single surgery for the resection and reconstruction over about 5 hours.  Thankfully, with proper resection, the likelihood of recurrence is very low.  Again, not the experience of my new American amelo buddies.

I’m looking at a 2-5 day hospital stay, followed by a few months recovery.  I’ll probably be out of sorts for a week or two.  He suggested Darren taken two weeks off to look after me.  (Aww bless.)  I’ll be on a liquid/puree diet for about a month, then soft foods for quite a while.  All going well, I should be looking fairly normal within a month or so.

Now, I said Dr S had been been busy.  It turns out I am not that much younger than his wife and he has been thinking what he would want for her.

The big decision is where to be treated.  While I could continue to be treated in the public system at Westmead Hospital, his experience is in the less nasty end of jaw tumours and we would no longer be under his wing.

Ever thoughtful, he runs through our options.  He is keen to help us decide and smooth the way for us.  He would like to refer us privately to another oral and maxillofacial surgeon with greater experience.  He has in mind a surgeon with whom he has worked and for whom he has great respect, let’s call him Dr P.  Dr P operates in Sydney out of the swanky new Macquarie University Hospital.  He is happy to refer us elsewhere if we wish and has a second name for us, a surgeon he has heard good things about but does not know personally.

Should we get a second opinion? He doesn’t think so.  While it is not cancer and there is no rush, he would like the surgery to take place in the next 4-6 weeks, if not sooner.  No rush then!  With a tumour of this size and aggression, there really is no option other than resection.  The priority is to get it all out.  Soon.

Great, we say, let’s do it.  Always one step ahead, he has spoken at length to Dr P about our case and secured an appointment for us at 2.15pm tomorrow.

It’s sad to farewell Dr S.  He’s been a gem.  He says he’ll keep an eye on me and how it all goes and we have his number.  Bless his cotton socks.

So my dear readers, to be continued… See you back here tomorrow, same time, same place.

Note to self, I might call my mother first though.  In my pitiful defence, it’s been a sucky day with pain.  I have been sucking down the pain killers more than I care for and I went back to bed this morning and again this afternoon.

On a brighter note, Alannah had a wonderful play date with Maxie and Adi.  Big thanks to Tash for looking after her and Deb for pulling her dusty self out of bed after mothers group dinner last night to join them.  What would I do without you all?



  1. Marieke says:

    That is quite the experience. it seems you have a lovely doctor indeed. someone who points out all the options and anticipates your answer to save you more waiting.
    Don’t worry about not phoning your mum first. When Jane died, I grabbed my phone to tell the world on Facebook and then I thought: hang on, probably should call some people first. Sometimes you just do stuff in the order that seems natural to you.

  2. Scary stuff… the photos of your jaw that is ;). Hope the meeting today goes well… and the new Dr P is as engaging as Dr S. If you guys need help with anything let me know!
    Thinking you you!

  3. Marieke, we really do owe Dr S a huge debt of gratitude. We haven’t wanted for understanding or advice. Darren said I grilled him the first time we met, long after Darren was entirely lost, and he was endlessly patient explaining it to me. You just don’t get on to a public list with the surgeon you want, nor in to see a new specialist the next day, without someone pulling strings for you. Some people are just gems.

  4. These pictures are tame. Especially compared to the scans they post on the ameloblastoma Facebook forum. Cooler pictures to come. Stay tuned.

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