Reconstruction

On Monday afternoon, we headed out to see Dr Amiable, my plastic & reconstructive surgeon, for another round of twenty questions.  He cheerfully gave us more than an hour and a half of his time.

Dr W also joined us but mainly to listen.  He’s an Advanced Fellow in Surgery who assisted on my second biopsy and will be in on my surgery.

Surgery

My surgery will be on Monday 1 August, starting around 8am.  I’ll have been admitted the day before, Sunday 31 July.

There will be 10 or so people in the operating room for much of the 10 hours that the surgery should take, he told us.  That’s my oral & maxillofacial surgeon Dr P, my plastic & reconstructive surgeon Dr P, Dr W, two other members of the plastic surgery unit, and the anaesthetist.  Then there’s a couple of surgical nurses and two scouts, who fetch anything needed so others do not have to scrub out and in again (an efficiency measure).

My oral & maxillofacial surgeon, Dr P, will kick off proceedings.  He’ll be doing the mandibulectomy.  That’s the removal of my jaw bone (mandible) and surrounding tissue to extract the tumour.

They won’t know the exact size of the ‘defect’ left until this is well underway, Dr A said.  That’s when he’ll join the proceedings, probably around midday.  He’ll have a look at the work Dr P is doing on my neck and work out the exact amount of bone and tissue needed for the reconstruction.

Dr A will take about two-and-a-half hours to ‘raise’ the fibular flap and about an hour to shape it around the titanium plate to fit the ‘defect’ in my jaw.  The shaping mainly takes place before the fibular artery and vein are detached.  This limits the ischemic time, the time between the interruption and reestablishment of blood supply.  Once he detaches the fibular flap, he will take a bit under an hour to connect it up by microsurgery in place of my jaw bone.  They have six hours before ischemic time becomes a problem, he assured us, so not to worry.

Finally, they’ll take about two hours to close up the wounds in my head and neck and in my leg.  Dr P likes to hang around for the whole surgery, he said, and may help with the closing up.  He’s unusual this way (unusual in a good way).

Fibulectomy (removal of calf bone)

They will only take the centre part of my fibula, Dr A said.  The fibula is in the deepest muscle in the leg and this just closes up over the bone stumps.  And no. they won’t insert any plates or pins in my leg, unless they need to take bone closer than 10cm to the ankle and then they’ll insert screws to prevent my ankle becoming unstable.

They use a bone graft rather than a prosthesis (synthetic material) because it heals faster, it is resistant to infection and it won’t loosen.  The fibular flap is a vascularised bone (with its own blood supply), he reminded us, so the bones unite in only six weeks.

My ameloblastoma has a good degree of soft tissue involvement.  In reconstructing the inside of my mouth, he may have to use skin taken from my calf and sew this inside my mouth.  Yes, that’s right, external leg skin inside my mouth.  Initially the skin has hair but, he said, the cells adapt and become more suited to their new purpose.

If he takes too much skin to be able to close up the graft site in my calf, he will use a split skin graft.  He’ll take another skin graft from my thigh or buttocks, he told us, and use it to close up the calf.  On further consideration, he thought the buttocks a better proposition: it will be more uncomfortable initially but won’t be visible in swimmers or shorts.

To recap: that’s hairy leg skin in my mouth and butt skin on my leg.  And they say dignity goes out the window in child birth.

I’ll also be left with numbness at the scar site on my calf.  The scar will start off quite dark and lighten over time, not quite to the colour of my skin.  I may also have some knee and ankle instability.

Here’s the diagram he drew for me of the process.  At the bottom, that’s the fibular flap shaped around the titanium plate (that ressembles a bike chain), with the skin graft below and the vein and artery attached above.

Diagram by Deva - 18 July-Edit.jpg

Mandibular resconstruction (jaw bone)

As Dr P said, they aim to over correct with the soft tissue reconstruction of my face.  Not the bone, they aim to get that just right (good idea, I thought).  It seems the soft tissue can take some time to settle, especially with the swelling from the surgical trauma and removal of the lymph nodes.  Over-correcting does mean that, six months later, I may still have trouble manipulating my tongue and jaw to speak and eat.  At that point, I may need some ‘debulking’ surgery to remove excess soft tissue and improve function.  At three months, he assured me, he will tell me to be patient.

They will undertake the reconstruction through the same incision as the mandibulectomy.  This definitely involves a long linear incision through my neck, but could also involve a ‘lip split’, an incision from the middle of my lower lip down my chin.  This is good for access during surgery but not so attractive after surgery.  And, he said, it’s Dr P’s call.

The incision scar will begin a purple or pink colour, turn red for around six months, then eventually fade to white.  It will thicken after surgery but thin over time.  I’ll be shown how to massage and rub silicone into the scar to aid healing.

The titanium plate, around which they shape the fibular flap, will remain in my jaw.  It’s shaped like a bike chain and I may be able to feel the bumps through the skin when I wash my face.

What if the flap fails, I asked.  Simple: they’ll do a new graft from the fibula on my other leg.

And if the final pathology shows the mandibulectomy did not get a clear margin around the tumour?  They plan to take a 2cm margin of ‘good’ tissue around the tumour.   They also hit some samples of soft tissue with liquid nitrogen and send off these ‘frozen sections’ for examination and feedback from a pathologist during the surgery.  Even with these precautions, the final pathology on the decalcified bone after surgery may mean they go back in to remove more bone and tissue.  In that case, they do not harvest more fibula for the reconstruction and work with what they have.  The result may be a skewed jaw.

Recovery

After the surgery on the Monday, he will probably visit me on the Wednesday morning and on the Friday.  I’ll also have follow up consultations with him about one month post-op, then every three months for the first year.

The first three to five days are crucial for the fibular flap.  Over those first three days, they will check the colour of the flap every hour.  If the artery blocks off, it will turn white.  If the vein blocks off, it may swell and turn purple.  They may do a radioactive bone scan, as Dr P indicated, but that’s done while I’m in my bed in the intensive care unit.

The swelling will be massive.  There’s a surgical trauma for a start, compounded by the removal of first two levels of lymph nodes, one of the body’s drainage systems.  The disruption to ‘lympathic flow’ causes lymphoedema: localised fluid retention and tissue swelling.  It can take two to three weeks for the body to create new drainage paths.  Massage will help.

I’ll have staples in my neck for a week to 10 days.  The drain in my neck will likely be open and leak over the first few days.  Dr P, he said, is a big fan of the open drain.

I’ll have a half plaster on the back of my calf.  It’s not a full plaster cast because of the swelling.  There will be dressing on the exposed graft site.  Nurses will change the dressing daily, coming to my home after I leave hospital.  I may convert to a plastic splint on the back of the leg after a week.  I should be able to run three to six months after surgery.

The big question, of course, is how much of what I experience after surgery will be temporary and how much will be permanent.  The swelling can take six months to go down.  The way my leg and jaw function, he said, will never be the same.  The way my leg and jaw look will never be the same.

And, he said, this surgery is not routine.  It’s a long and complicated surgery.  My thoughts exactly.

Details

Now of course, nowhere does the report say it’s not cancer.

Let me see what sense I can make of it.

The radiologists and the pathologists were concerned about the way the tumour had grown.

For the radiologist, it was the tumour’s proliferative activity, the buccal and lingual expansion and the perforation of the lingual cortex and the focal buccal perforation.  That, I think, just means the way the cheek and tongue had expanded and the way the tumour had penetrated their outer layers.

The pathologists were concerned about the way the tumour’s cells looked: somewhat basaloid appearance, apoptotic cells and scattered mitoses.  From what I took in speaking to Dr P this morning, this means the way the tumour had infiltrated surrounding tissue.

The two properties that separate cancer from your garden variety benign tumour are metastasis and invasiveness.  Metastasis is the ability of the tumour to spread from one organ to another and to start the growth of a secondary tumour.  This is the aspect of cancer that really scared me.  Invasiveness is the ability to infiltrate and destroy surrounding tissue.  Benign tumours are more visually defined than malignant tumours.

We already knew my tumour is aggressive and destructive.  It has eaten away at my jaw bone (mandible) until paper thin in sections and it has eaten into the surrounding tissue.

It seems the degree of invasiveness was an ‘unusual finding in a straightforward benign ameloblastoma’.  But it lacks ‘frank malignant features’.

So yes, they will have to remove a great deal of my jaw.  Yes, they will have to take a large margin around it to be sure they get all the cells from the tumour that have invaded the surrounding tissue.  But this aggressive resection will mean it is really unlikely that the tumour will grow back in my jaw.  Possible, but very unlikely.  And because it is not malignant, a related tumour is not going to pop up elsewhere unannounced.

Back to The Plan – Part 2.  Never did I think I would be so thankful.

If you haven’t had your fill of big medical words, feel free to read on…

Macroscopic

1.  ‘Left lateral mandible’.  The specimen consists of portion of grey soft tissue 11mm in maximum dimension.

2.  ‘Periosteum left mandible’.  The specimen consists of a portion of cream soft tissue 14mm in maximum dimension.

3.  ‘Deep mandible’.  The specimen consists of a portion of firm cream soft tissue 10mm in maximum dimension.

Microscopic

I’ll spare you this bit.

Comment

The histologic appearances in all of the three biopsies predominantly reflect organising fibrosis and granulation tissue with occasional strips of reactive bone all of which could reflect a reaction to prior biopsy.  In specimens 1 and 2, rare islands of odontogenic epithelial cells persist and although a suggestion of basal palisading certainly prompts consideration of a residuum of an ameloblastomatous process.

I have taken this case in conjunction with the imaging to the Royal Prince Alfred bone and soft tissue tumour meeting which is attended by Professor H who reported the original biopsy.  He has sent the initial material to Dr C in the USA in consultation as he had some concerns regarding its proliferative activity.

Professor H kindly brought recuts of the histology to the meeting,  The images were reviewed in which the presence of a destructive radiolucent lesion of the left posterior mandible with perforation of the lingual cortex and focal buccal perforation.  The lesion had focally multiloculated appearance and it extended into the ramus of the mandible.  On MRI it had a heterogenous appearance with soft tissue extension on the buccal and lingual aspect.  Overall the radiology had a somewhat aggressive appearance which could fit for a large ameloblastoma.

I have reviewed the sections originally reported by him in which the presence of an ameloblastoma with a partly cystic and partly solid infiltrative appearance is confirmed.  As noted by Dr H, much of the ameloblastomatous component has a somewhat basaloid appearance, apoptotic cells are seen and scattered mitoses are noted, an unusual finding in a straightforward benign ameloblastoma.  While these findings are of some concern, frank malignant features are not seen.

Professor H did inform me that he had done progesterone receptor on the tissue and found it to be strongly positive, raising the possibility of some degree of hormonal effect on this tumour.  Within the current material as receive by me. scattered islands of residual epithelium consistent with residual ameloblastoma are noted in speciment 1 and 2.  Residual tumour is not seen in specimen 3.

It’s not cancer

I am numb with relief.

In the end, after all the testing, after all the discussing, they do not think it is cancer.

The tumour is benign but aggressive.  More aggressive than they expect to see in a benign tumour.

But they think it is benign nonetheless.

It has penetrated the soft tissue and has areas of fast growth.  If untreated, there are indications it could turn malignant.

But they are treating it aggressively with resection.

I have time.

I have so much time.

It is an amazing thing.

The details will come later.  For the moment, I want to drink in the time, let the relief wash over me as the numbness abates.

Is this happening?

It is all quiet here now.

There’s the soft sound of watery white noise through the monitor and Alannah coughing intermittently.  My parents have gone home.  Darren has gone to bed.  He isn’t sleeping much or well.

I have a cup of tea and my notes from our telephone call with Dr P this evening.  He listened.  He answered our questions.  He reassured us.  Perhaps it was my initial judgment that was post-haste.

He ran us through the basics to begin.  Ameloblastomas are locally aggressive, destroying much around them but not damaging further afield.  My ameloblastoma is the multi-cystic or multi-locular variety, meaning there is more than one area of erosion of the bone.  Only the unicystic variety of ameloblastoma is treated conservatively.  The other types, including mine, are treated aggressively with resection with a wide clearance.  That’s roughly a 2cm to each side of my 10cm damage zone.

The incidence of malignancy in ameloblastomas is fairly small, he said.  They like to check.  The recurrence rate for benign ameloblastomas is high.  With the aggressive resection he undertakes, however, he thinks the recurrence rate is less than 15%.  I don’t believe we touched on the recurrence rate for malignant ameloblastomas.

The MRI scan enables them to see the difference between the spongy and hard bone.  It showed the tumour had breached through the cortex into the soft tissue.  That, if I understood correctly, is the area of concern on which they will focus their attention in the second biopsy this Saturday.

They will send the biopsy samples to a pathologist for examination under a microscope.  They will look for signs of ameloblastic carcinoma or sarcoma.  They’ll look to see if there is infiltration of the lymph nodes or blood vessels, if there is potential to metastasize (spread to other parts of the body), and how the cells look.

Can the pathologist say for certain?  Will you need a second option?  Malignant ameloblastoma can be difficult to diagnose, he agreed.  The pathologist at Westmead Hospital for my original biopsy is a world leading figure.  He will ask a pathologist at Royal Prince Alfred Hospital to take a look.   The pathologists in this field all know each other and usually like to pass it around to get others’ opinions.  A group of them get together formally every Friday fortnight and may look at it together.

All in all, it’s a lengthy process.  It may take one to two weeks for the results of this second biopsy.  The results of the first biopsy took nearly two weeks.  I won’t know until right towards the end of June.

If the biopsy results do not come back as clearly benign, I’ll likely have a CT PET scan.  Cancer cells, among others, take up glucose and the radio-isotope scan will show if this is happening in my jaw.

Whether they think the tumour is benign or malignant, the treatment is aggressive: resection with a wide margin and reconstruction.  If they still think the tumour is benign but locally aggressive, they will only take our my level 1 and 2 lymph nodes.  This will allow them the access they need to get the fibula flap in through my neck to reconstruct my jaw.  If they think the tumour is cancerous, they will take out the level 3 lymph nodes as well.  These are located below the jaw in the glands.

Waiting on the biopsy results alone and leaving the CT PET scan aside, this brings us right up to school holidays.  Can he be sure that the tumour won’t cause more destruction in that time?  Even if the tumour is benign, could the joint at the top of my jaw not be compromised in that time?

In his 25 years experience in this field, he has only once or twice seen the jaw joint removed.  The tumour has probably been growing for years and he would prefer to wait to have all the information available.  If he is allocated an operating room by the hospital, he assured us, he can operate the day he is back.

That’s mid July.  A month away.

In March 2007, they found a cyst on my right ovary when it hemorrhaged.  It had grown to 10 by 15 cm when they operated to remove the cyst in June or July that year and decided to remove the ovary and appendix as well because the cyst looked pre-cancerous.   It wasn’t, but the danger of delay is on my mind.

It occurred to me that, in preparation for that surgery, I had the blood test for the cancer marker CA125.  While I didn’t have the marker, that wouldn’t exclude cancer here, he said.  (Indeed, a quick google indicates that’s only helpful for ovarian or breast cancer.)

However, he mused, did I know the ovaries were the most common location for tumours?  And did I know the second most common?  Yes, the jaw. Lucky me.

He is happy to see us all before the surgery.  He’ll show us the scans and answer any more questions.  He can also arrange for me to meet the young man on whose malignant ameloblastoma he recently operated.  Yes, I said, I’d appreciate that.

Then somehow, almost as we hung up, the kicker.  Even this biopsy coming back as benign will not exclude malignancy.  Only examination of the full tumour under a microscope can do that.

And on that bright note, we said our goodbyes.

This is not good

The CT and MRI results from Tuesday are in.

They are not good.

We have a telephone conference tonight with Dr P and they are scheduling me for a second biopsy on Saturday afternoon.

They need to find out more than the MRI can show them.  They need to exclude malignancy.

Malignancy.

The next step might be a CT PET scan to determine whether my ameloblastoma is in fact cancer.

Cancer.

Read on below if you can.  We hope Dr P can explain it tonight.

CT scan

Report: There is an expansile unilocular lesion involving the posterior left mandible and ramus. The second and third left mandibular molars are absent. There is no evidence of an unerupted tooth. The mandibular canal is displaced inferiorly and its roof is dehiscent. There is thin remodelled bone peripherally with areas of focal dehiscence through the buccal and lingual cortex and inferior border of the mandible. There is periosteal reaction seen anteroinferiorly over the buccal cortex. No osteoid matrix is present. Extraosseous extension is better demonstrated on the MRI performed today. No other bone lesions are seen.

Conclusion: There is an expansile lesion within the posterior left mandibular body and ramus, consistent with the histological diagnosis. There is extension through the cortex into the soft tissues. The periosteal reaction is atypical and may represent secondary infection. A malignant ameloblastoma should also be considered.

MRI scan

Report: There is a expansile mass involving the posterior left mandible body and ramus. The mass is largely isointense to muscle on T1 and slightly hyperintense on T2. Centrally there is an area measuring of T11T2 hyperintensity.The mass demonstrates avid enhancement, with a small central non enhancing component measuring 8mm.

There is dehiscence of the buccal conex medially and the lesion extends into the submandibular space abutting the mylohyoid muscle. There is periosteal reacti0n anteriorly over the lingual cortex and the mass extends through the cortex and perlosteum, buccal gingival sulcus and buccinator msucle. The mass surrounds the facial artery and is limited faterally by the facial muscles. There is edema and enhancement seen around the anteror border of the masseter muscle.

Posteriorly there is involvement of the mandibular ramus and the lesion abuts the anterior border of the medial pterygoid muscle. Inferiorly the inferior areolar canal is dehiscent and displaced. The tumor breaches the lower border of the mandible to project into the submandibular space.

There is normal fat within the pterygoid palatine fossa. There is no evidence of perineural tumour spread along the trigeminal nerve. There is no denervation of the muscles of mastication. There is a left retropharyngeal lymph node measuring 6mm. There are non enlarged lymph nodes in level 1B.

Conclusion: There is an enhancing mass within molar ramus region of the left hemi-mandible, corresponding to the the histologically diagnosed ameloblastoma. There is extraosseus extension into the soft tissues as described and inferior displacment and dehiscence of the inferior alveolar canal. Periosteal reaction is an atypical finding and may indicate secondary infection. Infection could account for some of the soft tissue changes laterally. A malignant ameloblastoma should also be considered.

The Plan – Part 2

So that sucked. You can forget Part 1.

And to top it all off, I came out and burst into tears in the corridor. Then again in the car.

I like hand-drawn diagrams to explain the finer points. I like understanding why one option and not the other. I like thoughtful plans.

What we got was ADHD on steroids. That’s Dr P. Let’s call him Dr Post-haste.

He dashed in from surgery and whisked us briskly into his office. It all spewed forth in no particular order. It was breathless. He did not lead us calmly and reassuringly through the process. Each question was dispatched rapidly, with a few anecdotes of his or other patients thrown in for good measure.

And a mere 15 minutes later, he was off back to surgery.  Poof.  Gone as quickly and frenetically as he had appeared.

We sat in the waiting room as the receptionist began making appointments for us. And we jotted down what we remembered.

I’m probably looking at an operation in about three weeks time, the end of June or start of July, give or take. It will be far more like I had originally expected from reading the Ameloblastoma facebook forum.

There will be four of them in there: Dr Post-haste, two plastic surgeons and an anaesthetist. It will take 10 hours and that’s only because they are doing some serious multi-tasking. One lot will be opening up my neck from the outside and resecting the tumour and most of the lower left half of my face. That’s bone, nerve, soft tissue, teeth, two lymph nodes, the lot. Meanwhile, the other lot will be opening up my leg to remove my fibula (calf bone), the smaller of the two bones in my lower leg, together with enough muscle to properly attach it in place of my jaw. Then it will be one big party as they shape the fibula to a titanium plate to replicate as far as possible my face shape and connect it all up.

For those following along with the diagrams, the resection is going to look more like this.  The margin around the tumour he plans to take is more like 2cm than 1cm.  The resection will extend from the cheek bone almost to my chin.  That’s another two to three teeth.  He may well not know until the surgery is underway whether the dotted line segment will be included in the resection.
Dental x-ray showing likely resection

I’ll stay in hospital for two to three weeks.  I’ll receive physiotherapy to learn how to use my weakened leg and build up the muscle.  My jaw will be wired shut for the entirety of my stay in hospital, up to around six weeks after surgery.  In hospital, they’ll feed me through a tube up my nose into my stomach.  I was waiting for the punch line.  No joking matter apparently.  (I am expecting at least one smart one-liner in the comments for this post.  Please don’t disappoint.)

I’m not entirely sure how we make do at home but some on the facebook group recommend taking advantage of the gaping hole left by removed teeth if you get really desperate for real food. It will probably be a month or so before I have good use of my leg again, but stairs are good for you, he assured us.  Yes, even two flights of stairs up to our apartment with no lift.

If all goes to plan, I am hoping against hope that means I will be out for Alannah’s first birthday on Friday 22 July and her party on my birthday on Saturday 23rd July.  I won’t be able to dance around with her or throw her in the air.  I won’t be able to sing to her.  I may not be able to speak to her much.  Now I’m beginning to think this is unfair.  I want so much to be home for her birthday.

It’s time to focus on the little steps.  One by one.

First, Dr Post-haste needs a more detailed picture of the ameloblastoma. That means another CT scan and a 3D MRI scan. Pronto.  That’s scheduled in for this Tuesday morning, 14 June.

Second, we have to meet everyone. The two plastic surgeons will be Dr A and Dr W.  I have an appointment with Dr A this Tuesday afternoon.  I don’t yet have an an appointment with Dr W and the receptionist will call me with the details. Later on down the track, he will refer me to one of his dental colleagues to talk about tooth implants.

Now I know you’re not going to like this next paragraph, but I am not going to hide anything or fudge the truth.  Mum, sit down and take a deep breath.  In what he told us was the highly unlikely case they find malignancy in the tumour, he also wants us to have an initial appointment with someone in the radiation oncology unit.  He will already have removed two lymph nodes close to or compromised by the tumour (I did not catch which) and no further surgery will be needed, but radiation may be.

Scattergun yes, but as Darren rightly pointed out, we did get a lot of information.  I didn’t like the quickfire delivery, but I may just have to suck it up and deal with it.  I need some time to let it sink in.

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?

And the winner is…

Ameloblastoma.  It’s bad news.

Not unexpected news.  Indeed, exactly what I expected. I’m not feeling shocked or deflated or scared.  I felt ready for it, which surprised me.  A week of devouring everything I could find on ameloblastoma helped.

But it is the worst case in the range of scenarios we had discussed with Dr S. He’d initially hoped Odontogenic Keratocystic Tumour when he first met.  After our second meeting together with Dr D, he was leaning towards Unicystic Ameloblastoma.  He first conceded the likelihood of Ameloblastoma when he called to check on me the day after the biopsy.

Alannah and I were at Centennial Park with El and Tess when Dr S called early this afternoon and I dragged the diagnosis out of him. We walked and talked while the girls slept then explored the playground, ate dirt, tasted sand and caught a little sunshine.

All this to say I’d had an hour or two to digest the news before I got home and called Dad and Mum.  Here I am thinking I should get it over and done with like ripping off a bandaid.  Little did I know.  The first question from each: oh good, so it is definitely not cancer, right?  I am the bearer of good news, it seems.  Dr S has assured us from the start that it’s not cancer.  To say he is loathe to be definite is somewhat of an understatement.

That’s the big news of the day.  No no, I forgot!  Alannah can definitely stand from sitting and is proud as punch.  She has done it quite a few times, but not as repeatedly or joyously as today.

In other news, as they say:

  • He asked about pain.  I said, heck yes.  Well, words to that effect.  He took a lot of biopsy samples, he said, once he’d seen how the tumour looked.  That is exacerbating the pain.
  • I asked about the bismuth-iodine pack that he was going to insert during the biopsy to begin the marsupialisation treatment.  A treatment that is likely off the table with this diagnosis.  A day or so after the biopsy, there didn’t seem to be the iodine taste he’d suggested and I began to think he hadn’t put in the pack. Correctly, as it turns out.  Once he saw the tumour, he didn’t want to put me through that unnecessarily.
  • I also asked about the soft food fun.  Yes, he said, I need to keep on the soft foods and absolutely avoid hard foods.  No steak or apples, we agreed.  So looks like Alannah and I will be sharing fish fingers more often.

He did stress that he is still waiting for some bits or pieces, second opinion perhaps, to finalise the pathology.  He’s a little perfectionist, my man Dr S.  I know he knew the minute he saw the tumour, but I’m happy for him to do his thang.

I’m glad this part is done and dusted.  Now to move on The Plan on Thursday.

Asking questions

The more information I have, the easier I find it to get my head around all this.  I have been surprisingly calm waiting for the biopsy results.

Dr S did say to call him anytime I had any questions.  So this morning I asked him the list of questions I’ve been building up over the last day or so.

I know you are going to call me, but do you have the results of the biopsy yet?

They may not be ready by Tuesday, he said.  There’s a fair bit involved and it takes time.  I was thinking of you and we could make an appointment at my Balmain offices on Thursday when the results will definitely be back and which will also much easier for you.  Yes, I agreed, my husband can also come then, but I still really want you to call when you have the results.  Of course.

I still have a loss of sensation, a kind of pins and needles in my left half of my lower lip.  Should that have gone away?  Will it go away?

That is normal, he said.  But it may not go away.  It depends on the pathology and the surgery.  If the tumour is benign aggressive and wrapped around the nerve, then we may need to remove it.  You will get used to it and adapt, he assured me.

I have run out of panadeine forte.  What should I take for the pain?

Two panadol to start, then two nurofen if that is not enough.  Two of each at the same time is fine.  I’d want you to come off the panadeine forte in any case, he said.

I am feeling very tired.  Is that related to the panadeine forte?  Will I feel better on panadol and nurofen?

Yes, the panadeine forte and the anaesthesia from the surgery.  You will probably feel better.

I know you are now thinking it is less likely to be a unicystic ameloblastoma.  I know you can’t say until the biopsy results, but it just helps me to have an idea of the worst case scenario?

I don’t want you to worry.  [etc etc then finally]  The worst case is ameloblastoma, not the unicystic type.  Ah, I said, that is what I had already thought.  And that means resection, bone grafts, etc.  Yes, he said, but we don’t know until we have the biopsy results.

Yes, I don’t like to hear my thinking confirmed.  But I have already read a few ameloblastoma blogs (already linked in on my blogroll) and I have already joined the yahoo ameloblastoma support group.  There’s a facebook page too that Tina from the Renewing Strength blog has set up that I might join.  All this to say that I have a fairly good idea of what might be in store for me.

And I didn’t burst into tears.  Darren gave me a big hug though.

I have only had three bouts of tears so far.  First, telling people in those first raw few days after they found the tumour.

Second, before and during getting the cannula inserted for my general anaesthetic.  (The lovely Dr D held my hand and said perhaps they could get me something calmative for me next time.  Yes, please.)

Third, when my lovely neighbour and husband organised a little present for me: Aesop “Breathless” scented oil and a few other bits and pieces.  Then I balled.  And again on telling my mum about it.  Little presents like that mean so much.  Thinking of it is making the tears well up again now, so enough of this.

Time to start my day.

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