TumourWatch6 - A Timeline

COMING UP - Commence Chemoradiotherapy on Monday 7/5

NOTE: A couple of the posts have been updated, but I have found out that updates do not trigger an RSS feed email. I'll try to do shorter posts and complete them in one sitting.

Tue 1/5 - PEG (Percutaneous Endoscopic Gastronomy) fitted.  Was sedated, not GA'd, but didn't feel anything.  Spent the night in Ward 5D.  A bit of pain being managed with paracetamol and Endone.  The PEG has been tested and is viable!

Tue 24/2 - Met Dr P, the Radiation Oncologist.  Found out that my tumour was too small for the trial.  He detailed some of the short and long term side effects.  He also advised that I would be receiving three levels of dosage.  High on my right (tumour side), Medium on my throat - no macroscopic cancerous tissue remaining, but margins too small and low on my left side - no cancerous tissue detected, but a standard precaution.  I also had my locating 'mask' fitted. An interesting procedure - you would not want to be claustrophobic!

Fri 20/4 - Went for Audiology appointment - the chemo can damage hearing temporarily or permanently, so they like to get baseline data.  My hearing was all pretty good.
Then went to meet the oncologist Dr S (I forgot to ask him if he cared about being named - I feel like he would not have cared, but may have paid me out for doing the blog!).  I might qualify for a clinical drug trial - Avelumab.  I had to go for another CT scan at good old Repat Radiography for that.  If I am approved I will get my normal treatment, which at this stage has not changed from yesterday, and I will get the Avelumab (or saline - damned scientifically controlled studies) on top of that.
Even if I get the placebo, I'll let myself be tricked into receiving all the benefits of the placebo effect!
My throat is coming around.  No Endone today, stopped the Panadol Forte late morning, so I'm on supermarket painkillers..so far so good.
Got a bit 'backed up' with the Endone and codeine - which is no fun (on the border of too much info there sorry), but seems to have passed.

Thu 19/4 - My Birthday!  Met AProf Ooi in the morning.  Discussed results of biopsy.  HPV 16 present - we knew that already, but confirmed.  Primary tumour in tonsil was all removed, no cancer in the throat BUT the margin of non-cancerous tissue on the tonsil-tumour mass was only 0.7mm in one area, which is well less than the 2.0mm margin that would have 'cleared' me of requiring further treatment to throat. Bummer!  The tumour was also a bit smaller than expected, so my TNM Staging is now T2 N3 M0, which doesn't translate to anything meaningful, but will be of interest to some.

It looks like the treatment will not involve further surgery except as a last resort.  The current unconfirmed plan is 7 weeks of RT (every weekday) with a concurrent hit of chemotherapy once every three weeks.  They reckon that should do it, but 'salvage' surgery if required after that.

Wed 18/4  - Advised that HPV is the cause of my cancer - A bloody great day!

Thu 12/4 - Attended Flinders Private for observation and biopsy under general anaesthetic.  Dr Ooi had also suggested that he might remove the tonsil/tumour if there was a margin of non-cancerous tissue between the tonsil and the wall of my throat.  He did remove the tonsil.  Great news as if it was not surgically removed, it would have to be radiated.  The lymph tumours will still be radiated prior to surgery, but that can now be limited to one side of my neck. A Big Win!

Wed 4/4 - Had first appointment with specialist Dr Eng Ooi from Adelaide ENT Surgery based in Flinders Private.  He confirmed that the primary tumour was on my right tonsil.  Had a nasendoscopy, and to our relief the tumour did notappear to involve surrounding structures such as tongue, vocal chords or epiglottis. The biopsy results could not confirm whether it involved HPV-16 -but Dr Ooi suspected it and that was the outcome we want as it is easier to treat.

Tue 3/4 - Attended GP - it is not lymphoma - crap! - it is a secondary squamous cell tumour - the primary tumour is suspected to be in my head or neck, based location of secondary and because high level of squamous tissue in that area.  Later that day I re-attended Repat Radiology and had a head CT and neck X-Ray.

Fri 30/3 Wait four days for easter...we pretty much decided that it was lymphoma.

Thu 29/3 - Attended Bensons Christies Beach for an ultrasound guided fine needle aspiration (FNA) biopsy.

Wed 28/3 - (Dark Day) GP called after receiving results - saw her in afternoon - first solid concerns about lump being a cancerous tumour.

Tues 27/3 - Re-attended GP - sent off for bloods and an ultrasound at Repat Radiology that afternoon

Wed 21/3 - Day off because of hand - went to GP - GP decided to see if the antibiotics affected lump

Tues 20/3 - Lacerated finger with blade - tendon damage - on antibiotics til Mon 26/3

Mon 19/3 - First noticed lump in my neck while shaving