Just checking in...

Hi Upkeep 

Welcome. I didn't have TORS as my cancer was inoperable but I am still here kicking and kicking well nearly eight years afters 6 weeks of RT.

Have faith. This cancer is really highly curable and there is always the fall back of radiotherapy if margins were not clear. Lymph nodes are pretty good at holding this cancer back and distant spread is rare.

There are quite a few of us who have had the same op as you and I'm sure they will be along later to share their experience.

Good luck 

Thanks Dani - I think I'm just in that post-treatment pit after the flap of diagnosis and surgery. Every swallow is murder, even saliva (which is made of glue even without RT) It's like trying to swallow a fist. Trying to maintain swallow reflex if I can but it's Hellish.

Yep...the folk on here who have had your op say the pain is real rubbish. Make sure they send you home with lots of good analgesia. Have a look at Peter's story to keep you busy while you can't sleep. Just click on his name PFJTHS 

Hi Upkeep, 

Earlier this year, at age 63, I had TORS and a neck dissection for left sided, HPV positive, tonsil cancer. Swallowing post TORS was difficult and pain pretty intense but was ok after a couple of weeks.

TORS got excellent margins but 2 nodes were positive so I was offered 6 weeks adjuvant RT as a 'clean up' which I accepted. The positive nodes had done a good job as there was no ENE. 

Just had my 4 months post RT scan to see if the surgery and RT has worked. The scan showed no signs of cancer so it looks like it's worked and all is good.

Unfortunately the scan 'lit up' an issue with my prostate!! So that needs further investigation. Fingers crossed it's nothing too serious. 

Hi JulioS

Thanks for the reply - swallowing is pretty grim but surgery was only on Thursday. Hope I'm past the slump. They really do "kill it with fire" with all the cauterization don't they? I'll have 2 hot nodes as that's how I was diagnosed - they were all that showed up on MRI and PET. They did a whole body PET so I asked if there was any sign of mischief in my bones or prostate bed. All clear although my L5-S1 joint has some arthritis (who knew?).

Really hope your prostate flag is just something like BPH and nothing more sinister. Not to diss my prostate brothers, but from personal experience (T3a N0 MX, Gleason 4/3) if you catch it early and you are fit for surgery it's a doddle compared to this.

Thanks for info Upkeep. My last PSA (Jan 2025) was 1.2 so I'm hoping it's BPH as well. Just waiting for a PSA result from Friday and will know more. 

Keep going with the swallowing. Things will be a lot better next week

Absolute best of luck!!!

With the caveat that some prostate cancers don't push out much PSA I'd say a PSA of 1.2 ng/mL at 63 is very good, mine was 11 ng/mL on first testing, 9.8 on repeat. I guess they are playing safe. Best of luck. I'm stuck awaiting discharge due a turf war between the doctors and the hospital pharmacy wrt how much morphine based pain relief they can send me home with.

It's never enough.

Your GP can prescribe the high strength cocodomol so get onto them asap.

Hi Dani - you're not joking! They didn't get round to releasing me so I'm still I'm hospital with my trusty spit pot to hand. There was reluctance to release me with xomorph and oromorph so I opted for oromorph. I think they are throwing in some codeine as compensation ha ha. Gosh will I ever poo again? Nights are the worst. A week ago I was checking in!