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.

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Comments

  1. I feel for you. It seems to me that the need to know everything as soon as possible also leads to goalposts moving all the time. I had the same with Jane when we kept learning things bit by bit. One day we were adjusting to a bit of new info, only to learn in the next appointment that actually, it might not be quite as we discussed last time etc. It makes it really difficult to start emotionally digesting what is going on as things keep changing. But then again, not knowing anything is also too nerve wrecking to contemplate. Hopefully therewill be at least some kind of clarity soon so you really know what you are facing.
    Virtual hug from Northampton!

  2. You asked Dr P about the duration of recuperation. He indicated that as you appeared fit and well (no obesity, no smoking, no alcohol) that he was of the opinion that it was more like a recuperation period of 4 weeks rather than the 4 months that Dr D (plastic surgeon) had supposed. Maybe it could be worth trying to reorient your head to split this ‘difference’ making it 10 weeks: a 6 week healing period where your jaw is wired and leg in caste; and, a 4 week strengthening period where you regain personal confidence.

    It was good to see you wolf down that pie after the conference call.

  3. MARLIES says:

    I’m so glad Dr P finally took the time to explain and reassure you. There is nothing worst than a Dr not putting in the time, especially on your first visit with him. I think they forget to see things from the patients view point. Your overwhelmed and they’re rushed, not a great combo.
    Stay strong. M

  4. Sounds like they being thorough. Which is a good thing.

  5. Hi K
    Hey thinking of you guys at this time. You guys are made of the tough stuff and have what it takes to make it through. It will only make you stronger and expose you to an even deeper experience of life love and all that is universal. Not sure what we can do, however if there is anything just let us know.
    All the best Jet and Theresa

  6. Marieke, I read somewhere that it is much more difficult to take bad news by drip feed than all at once. I can see how that’s the case. Each time I see a doctor or get a test result, it is worse than the last. But the idea that they are keeping something from me frightens me more. I think I just have to be strong and take it because I want them to be straight with me. Especially if the news is bad.

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