Seriously Good News
... following today's meeting at the Royal Marsden with Dr Chris Nutting about my prognosis. The emphasis was what we know and can expect about my presentation of the cancer, not 'all ACC sufferers'.
Fresh air
Chris rubbished the oft quoted (to me by Dr Odutoye at St George's Hospital when we were first told I had ACC) dismal stats on ACC of "5% death after 5, 60% after 15 years from diagnosis".
Most ACC diagnosis happen to people in their 60s or 70s, and the stats do not look at 'cause of death' so it is not surprising the mortality rate is high.
Staging
Also, the 'presentation' and 'staging' of the disease is very important and I am in a good position on that front as a "T2 N0 M0". T refers to tumour and can be 0-4 (bigger numbers are worst), N is for infection of lymphatic nodes and system which can be 0-3, M is for metastatic spread and can be 0-1.
So whats my prognosis ?
+ Local Recurrence - "the same tumour coming back" - after surgery there was a 30-50% chance, but by adding the radiotherapy (hell) treatment this has fallen to about a 10-30% chance in the long term (10-25 years).
+ Metastasis - "popping up elsewhere" - There is perhaps 30-50% chance of this happening in the long term. In the following order of likely places: lungs, bone, liver. This is the big unknown. Chris has two patients with the same presentation as me he treated about twenty years ago who are still absolutely fine today!
1 in 2 chance of being 'cured'
Today is the first time EVER the word 'CURED' has been used in connection with my case. There is maybe a 50% or 70% chance that I am 'cured', which means there is effectively no remaining ACC in my body of note.
Other good news is that the PEG is dead
The PEG tube came out today because I have maintained my weight for the three weeks. My weight will not really increase until I have finished healing, and there is still along way to go on this around my neck, throat and tongue.
This means I can return my infernal enteral pump and its associated giving packs and Jevity nutrition feeds and go swimming with the kids :) hurrah!
