Mouth cancer reoccurrence.

A lot to say but   2018 1st cancer ,full big op,Radiotherapy 2020 diagnosed again at routine face to face appointment (Thank you nhs)since then had all the tests which came back positive. Also 2x operations to try and cut out .The 1st didn't work .As it stands now waiting on results for 2nd op,which was done 2 weeks ago .I have a appointment in another 3 weeks with my surgeon. Thing is dont think I am coping in the waiting game again .Would it be wrong to ring maybe his secretary or my nurse to see if there was any results. During these 2 ops have had great difficulty drinking and eating the small amount I would manage over the last 4 years .I cannot have anymore Radiotherapy, so my next if needed only operation would  involve making a new jaw out of the bone in my leg ,with the possibility of never again being able to drink or eat again .If it comes to this very unsure if I will do .Its been hard enough the last 4 years taking away my quality of life .Advise ring or not  ,this all been going on since Oct 2020 .The day it was confirmed was the same date I had my operation 1st time round .Thank you .I am on the very edge now ,shaking and twitching  and very withdrawn .Thank you again 

  • Hi Markovic,

    I'm sorry to hear about your struggles. I had two separate tonsil cancer occurrences (2018 & 2019) and am currently in the watch and wait phase.

    I don't think it would hurt to give the secretary a call in the circumstances. If the results are not yet available, and if you explain how anxious you are, the secretary might be able to give you a contact number for someone who can prescribe some medication to help calm you while you wait, or she might refer you to your GP for the same.

    Best wishes.

    Tim
     

     

     

  • Hello and thank you for your post,

    I am sorry to hear about your situation. 

    Waiting for the results of the surgery must be a really difficult time for you and I can understand you asking if you can call and speak to a nurse or secretary before your doctor's appointment.  However I don't think ringing them will necessarily result in you knowing anything more. This is because they may not know the result.

    It is likely that at a multidisciplinary (MDT)  meeting where a group of specialist cancer doctors and health care professionals will discuss your results.  Your next appointment may follow on from this and your doctor will discuss with you the outcome of this meeting and what the plan for you is.   

    You may want to contact your nurse and talk about your problems with drinking and eating.  You could also let your nurse know that you are finding it difficult to wait.

    Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Take care,

    Caroline 

  • Thank you for your advice .My reason for stressing more is that my 1st op for reoccurring mouth cancer which involved taking out more teeth and taking frozen slices for testing, this on my discharge papers came back as not malignant from slices taken during the operation, my surgeon came to see me after and said all was OK. I had a pack put in to help heal the wound .I then returned 4 weeks later to see him for pack taking out and he told me things were not quite right ,a sample was showing cancer from maybe what he described as crumble ,were bone had got mixed in with flesh .Upon this he said another operation would be required which involved the same procedure. This I have had done 2 weeks ago.Physically I am OK, as feel like been there and know what to expect .My worries are the results/outcome 2nd time round .I do not see him for another 3 weeks ,and there to my knowledge is no MDT meeting as was the 1st time .Just my surgeon. He has explained quite briefly that there is no option of radiotherapy again ,just surgery. This is why I am getting worried about waiting so long for my results. On next appointment I am just going to his dental clinic which is held every Tuesday, this is were I normally just go for my check ups .Were as after 1st operation I went to the cancer unit On the Monday  ,which the letter said MDTAnd just saw him.All MDT meetings are there on Mondays .This is why I am getting confused as to whether there is anything to be worried about .Originally when he found this ,he assured me it was a small cancer and been caught quick ,he has also said this on letters ,but as this is going on I just don't know .Would you by any chance know what a Anoop clinic is ,this is on my discharge letter for follow up .I do understand that 1st time they didn't get clear margins, Sorry I am just just constantly getting myself worried as to whether contact someone to see if they have any news ,unsure if I am overthinking with my appointment being at dental clinic and not at cancer unit .Sorry for the big rant .And thank you for everyone's advice .

  • Thank you for your reply .The waiting game is horrible. I do not want to go down the medication route as I already take way too much in my opinion. Most of which is for 1st cancer and treatment side effects .I have contacted the nurse for advice .Thank you again and good luck. 

  • Hello Markovic64 and thanks for getting back to us,

    I can understand that the waiting is very stressful given your situation.

    I don't know what an Anoop clinic is, but looking on Google Anoop is a name of Indian heritage - I wondered if it might be your surgeon's name.

    I'm not sure of the clinic or MDT arrangements at the hospital where you are being treated. If the MDT meets on Monday, your case may be reviewed the day before your appointment on the Tuesday if it needs to be.  As this is worrying you it might be worth contacting your specialist nurse,  ask them to clarify if it matters which clinic you are seen in and if your case is due to go back to the MDT before your next appointment. 

    I hope you can get some clarification and am sorry not be able to help. 

    Best wishes,

    Julia