Surgery next week

Hi Chris

I not had any experience with TORS, but my journey sounds very much like your own.  A couple of days ago I had an MRI and then yesterday a PET scan, and they have discovered there is a small tumour on my tonsil and in my lymph gland.  they have booked me for surgery next week to remove the tonsil and probably some of the lymph node.  Then, the consultant said he is fairly confident that we can avoid chemo-radiotherapy!  They also told me that it would be very unpleasant and painful but I figure that most people here on this forum have been through far worse and still they have battled through. 

Good luck with everything.

Hazel x

Chris_2024 said:

I have been advised that this is a fairly common approach in the case of no confirmed primary and that I should expect that they may remove a tonsil(s), lymphoid tissue on the base of the tongue and anything else that they don’t like the look of.

Hi. It is a common approach but not usually by TORS. The advantage of robotic surgery is that the excisions can be more accurate and precise so there's a better chance of all the cancer being removed. Sometimes the surgeon finds more than is on the scans. Biopsies will confirm where the primary is and whether there is sufficient margin to avoid further treatment.

I couldn't have surgery but people here report that tonsillectomy pain is quite severe for around a fortnight so just make sure you get enough analgesia and don't try to be brave .

Fingers crossed you can avoid CRT

Hi Chris, I had my both my tonsils out, it's not a very pleasant thing, but as long as you keep on top of the pain with the painkillers it is all manageable. Hopefully they will be able to get it all sorted with the surgery alone. Best of luck for next week.

Ray

Hi Chris. I had my right tonsil removed using TORS 4 years ago, but they already knew that’s where the tumour was. They got all of it out but the lower margin was smaller than they’d liked, as it was close to the carotid artery, so I was advised to have the standard adjuvant chemoradiation afterwards as a precaution.
As far as the patient’s experience goes, using TORS is more accurate and there’s less manual manipulation of your mouth, neck and jaw so it’s less traumatic. However, the after effects of the op will be the same as a standard tonsillectomy, so pretty sore over the first few days but pretty much back to normal after about 3 weeks, in my experience. I had a neck dissection at the same which made it a little more arduous. You’re fortunate that they can use TORS, because not hospitals do, as it’s very accurate, albeit time consuming for the team. 

Hi Chris. I've had 2 TORS. First one end of March to take out both tonsils ( stage 2 in right tonsil but no spread to nodes or anywhere else). Second TORS end of April for oropharangectomy and neck dissection. The tonsils is a quick operation, day case but it is very painful especially around day 4/5 but they will send you home with lots of liquid morphine and difflam mouthwash. The oropharangectomy was much much worse and still have issues now a few months on. Hope all goes well for you.

Hi Chris 

I had tongue biopsy and tonsils removed back in October. The biopsy showed it was in base of tongue. 4 weeks after tonsils out I had robotic surgery on base of tongue to remove tumour at the same time I had neck disection to remove lympth nodes. Unfortunately the MRI/pET scan did not show how many nodes affected. After surgery I waited 3 weeks then told they took 33 nodes out and found C in 3 of them so I was advised to have RT. I did 5 weeks of RT. It’s amazing what they can do to fix us. Take care 

Thank you all for taking the time to reply. This forum really is a brilliant resource, especially for those of us about to start treatment. 

I had me pre-op on Friday there and it all went well. Green light for Wednesday morning now. Nervous yet anxious to get this process started. ️

Good luck Chris_2024 I will be thinking of you.  I have my surgery scheduled for this Thursday 29th August.

Hugs

Hazel x

Hi Chris. I had exactly the same procedure July 16th. No primary identified but SCC in a lymph node. I had TORS to remove both tonsils and ‘have a look around’ my tongue and a neck dissection. What they find will determine next steps. It was painful but I found it completely manageable. Took a few days but I found it easier to eat soft ‘lumpy’ foods. E.g scrambled egg, porridge, mashed avocado - so it’s really worth trying lots of different things to see what works for you.

Eating was VERY SLOW but it was more around the challenge of making my mouth/swallow work than pain. As others have said pain was worse around day 5-7 for me.

My unexpected challenge was sleeping - I could only sleep in a sitting position. Not sure if this is common.  I invested in a really good airplane pillow which was a life saver. 

Things started to improve very rapidly in week 3 and I went back to work PT in mid August. talking and eating is still slow and tiring. 

Hi all, just an update. I know there are a few people in a similar spot to me. 

I went in to the QEUH yesterday and was quickly admitted to the same day admissions unit. I was initially shown to a waiting area where I confirmed my details and they told me that I was second on the theatre list. There were nine patients in total.

I had the usual blood pressure, temperature test, quick questionnaire to talk through etc. Nothing out of the ordinary. The surgeon operating on me then came in for a chat, very friendly and explained in full what she was going to do. This being, panendoscopy to get in the throat to have a good look around and then a move on to TORS for the removal of my right tosil and a tongue base mucosectomy. My anaesthetist then came in and had a chat, again, very routine and friendly. Put me very much at ease. 

I then got changed into my surgical gown and slippers (not sexy) and was walked around to the anaesthetic room by one of they team, chatting all the way. 

Into the anaesthetic room and onto the bed. Cannula in and a bit of banter with the staff. ECG hooked up, blood pressure monitor on and the I was knocked out. Next thing I know it’s 4 hours later and I’m in recovery. 

I am minus the tonsil and tongue base but can’t feel it at all. Not long after that I’m taken to my ward and admitted in there. Single room with a TV and en-suite so I wasn’t going to complain! 

My surgeon came in and explained that she couldn’t find the primary site and that this may be due to a number of reasons, most likely being that it’s in the tonsil and it’s very small or my immune system has killed it off. Either way, the tonsil and tongue base are off to pathology for examination and I’ll have my follow up with the consultant a week on Friday. 

I spent one night in the QEUH and broke my fast with a lovely toffee yoghurt. I managed to eat a steak pie and mashed potatoes with carrots although I mashed the carrots to make them easier to swallow. The pain isn’t really there yet, I have been advised that this will come in a few days. It’s more discomfort, particularly when eating. But it’s manageable and water helps to wash down. I’ve been given liquid ibuprofen, codeine cocodamol and a difflam spray that I’ve not used yet. I have Oramorph during the night but since then haven’t had any. 

Radiation is a certainty. They’re not sure if I will also have chemotherapy and the consultant mentioned that I am a good candidate for the PATHOS trial so I’m going to be reading into that. 

I’d just like to take a moment to praise the assistance given to me by the NHS, they are a godsend. My surgeon was lovely, the consultants I have spoken to have been vastly knowledgable and have explained things well so that I can understand and my head and neck cancer nurses are ever present and contactable, happy to chat about whatever rubbish has popped into my head. 

Best of luck,

Chris