Leukoplakia floor of mouth carcinoma in situ: surgery- wide excision + repositioning of submandibular salivary ducts and pack

Hi Larna

sorry you’ve found yourself on here snd what you are going through. Do you have a dedicated cancer nurse you could contact ? Or does the hospital have a Macmillan nurse ? You coujd try them. Presume you are in the U.K. ? there’s an official complaints procedure called P A L S your hospital will have one. I can’t comment on your cancer as I was a tonsil cancer patient So don’t have any experience. Just wanted to respond to you. 
As for burning mouth syndrome I can sympathise as I get periods of that. I find gargling or swilling a baking powder and luke warm water solution can alleviate it. One teaspoon to a glass of water. I find cheese and most dairy products seem to make it worse so try to keep those to a minimum when I have a flare up. Hope this may help 

as for spread in my case from original diagnosis to treatment starting I was 63 days  which is 9 weeks .I know some who have been much longer and still came through treatment ok  

Hazel 

Hi Larna. That’s a lot to go through with little support. Action through PALS usually gets things moving. Put your postcode into this link to find yours 

https://www.nhs.uk/service-search/other-services/Patient-advice-and-liaison-services-(PALS)/LocationSearch/363

Csn you request an urgent appointment with your GP so that they can at least examine your mouth and with a bit of luck they should be able to get you seen by a MaXFax registrar at the hospital’s Acute Medical Assessment Unit which is a sort of A&E. 

So sorry to hear about your burning mouth. I get it on my tongue sometimes and mine is due to Radiotherapy. I have a friend whose burning was down to nerve damage after surgery. So that needs addressing properly. 
Carcinoma in situ is the lowest grade that is a cancer so please don’t worry about aggressive spread. Mine was a T2 and from diagnosis to treatment was 4 months in my case 
I hope you get somewhere soon 

Good evening Larna, please do not put this off any further, personally you have been treated very badly, i had floor of the mouth cancer and never had problems with aftercare or the course of radiotherapy and chemotherapy that followed. I would certainly ask for a meeting with your consultant to tell how you have been treated, try for a face-to-face meeting. You could also try speaking to the head nurse who should be looking after your affairs. If you don't get any answers then just turn up on clinic day, mine was a Tuesday or Thursday, and tell the receptionist you would like to speak to someone from the team because waiting over another month is not good especially with your history, its normal practice to see patients like you straight away. Whenever i had any concerns i was in seeing my consultant within a week, i know its been difficult with covid but you should be a top priority. As Hazel mentioned you could contact P.A.L.S  so its on record and can be dealt with later . So sorry for you to be going through this as i had excellent service like you should be getting. Wishing you all the best, take care.

                                                                         Chris x

Hi Larna

Being ex NHS your treatment in terms of appointments and delays seems very sub-par.  I would certainly raise a formal complaint through PALS.  That way it gets properly investigated and, hopefully, nobody will have to suffer again the way you have.  Be rest assured that a formal complaint will in no way jeopardise your future treatment.

Have to agree with the others Larna.  Do contact PALS straight away.  My stepdad was forgotten recently having had serious brain surgery.  He contacted his local PALS who sorted everything out (and more) almost immediately.  His treatment was exemplary as a result.

Linda x