Seconds out! Round 2

Thursday 04 March 2021

Last Friday I had a phone chat with my consultant and was told that the cancer did not show up on the MRI which was not available for the last MDT meeting.  The recommendation was still surgery despite not being able to detect anything on the scan.  They know where it is in the tongue as they have biopsied the site.  Further discussions were had at the MDT on the Tuesday just gone.

The CNS rang me on Wednesday and said the discussion still supports surgery - it is Transoral Laser Surgery (TLS) they a planning on doing.  If anyone has some advice on preparing and recovery, I'd gladly accept that.

They do not feel there is any serious degree of urgency to operate, so it is looking like April for a planned date (although I will take a cancellation if offered).  It also sounds like recovery should be fairly rapid and good.  Just got my fingers crossed the margins are good and we don't have to go into radiotherapy this stage!

I am still getting good support from my secondary hospital with a physical exercise regime to get "pre-op fit" and a friendly chat once a week to make sure I am coping.  All feels very good compared to some experiences I've heard of.

I am just a little frustrated as I want to get on and have this dealt with before Lockdown eases so I can enjoy our sorely missed freedoms!   At the same time the message that this is not of immediate concern is reassuring as I've been hunting for this cancer primary for over a year.

Hi Peter

Any idea why they are performing TLS rather than TORS?

Linda x

Hi Peter. Thanks for update sorry can’t help with surgery question I was chemo radiation. Fingers x for cancellation. 
Hazel x

Thanks for the update Peter. Presumably they are using laser because they can easily reach the area endoscopically and the cancer is small, definitely smaller than MRI resolution which I think is around 1 to 2mm. 
I have a friend who has had oral laser surgery and he reports a sore throat for a few weeks and that’s all. Absolutely nothing  for a day or two as the laser kills the nerve endings which take time to regenerate. As you’ve already endured the pain of a tonsillectomy I’m sure you’ve got this. 
I’m really keeping my fingers crossed that you can avoid RT. That would be a real cherry on the cake.  
Hope you get fixed up soon 

Hi Peter

I had TLS on the Epiglottis and I have to say recovery was fast.  Had it done twice because they did not get the margins first time but I was able to go back to work within a couple of weeks.  Admit the tongue is probably a bit more sensitive but am sure you will get a good result.  My surgeon was MR U obviously cannot name on here but he seems to be the TLS expert in UHS and was a really nice man.  He explained to me they could do it 3 times before having to go down RT route, but once RT is done it cannot be done again, not sure if yours will be the same but hope this helps put your mind at ease.  Its good they have a plan and if your recovery from this is as fast as mine you will be fighting fit for booking that long awaited holiday etc.

Good luck keep us posted.

Love Mo xx

Hi Mo how are you? 

Strangely I have a Mr U as well!  I guess it is the same person.  He did my major neck dissection last year and finished off my tonsils.  A good surgeon.  Fortunately my secondary consultant works across both sites so I have good continuity.

I was told that they may go back if the margins re not good.  Was also told they may do a frozen section to try and ensure all is OK during the op.

I had TORS for my base of tongue and was given some tongue and swallow strengthening exercises to do for a few weeks beforehand by SALT.

I was warned that it would be extremely painful but that I would be able to self administer morphine.  I did have an NG tube for the first few days in hospital.

In terms of recovery, my consultant told me it would be painful for 4 weeks but then I should suddenly be able to start eating normally again and she was right.

I was prescribed Scandishakes which were really helpful and eventually could manage pureed soup and Ready Brek.

Also prescribed Antacid and Oxetocaine Oral Suspension to swallow 5 minutes before eating to anaesthetise the area plus Difflam mouthwash and spray to use prior to eating.

Due to complications bringing me round from the anaesthetic in hospital I wasn't allowed the morphine syringe driver but I was prescribed Oramorph (and Laxido) to have at home together with liquid paracetamol and ibuprofen.

I'm assuming the recovery from TLS on the base of tongue will be similar to TORS Peter.

Linda x

Hi Dani

Thanks for asking am hanging in there, 2 out of 4 Chemo done so being positive at half way although hitting the 7 - 10 day brick wall at the moment.  Had a Netflix day yesterday as was tired but up and pottering today.  Just been signed off by the Thoracic surgery team so one section complete and hoping that once chemo is done normal business may resume.  Heading towards that light at the end of the tunnel and looking forward to being able to cuddle the grandchildren if a bald scarred granny doesnt frighten them to much or if they even remember me, lol.  Sun is out and the world always looks better bathed in light.

Love Mo xx

Hi Mo 

good to hear from you. Am sure the grandkids will come running to you soon. 
Your sheer determination is a credit to you. Hugs to Sherman as well. 
grest new thoracic has signed you off as well 

hugs

Hazel x