Ambassador Paul Roebuck’s Blog Explains the Process of Diagnosis

Oral Cancer – The process of diagnosis explained

Fear is the primary emotion, it drives a significant amount of behaviour because it’s the default (first) emotion that we experience when we see, hear, touch, taste or smell anything.  The fear emotion is so significant because it has its own hard coded neural pathway inside our brain.  Of the estimated 90bn brain cells about 20bn are focussed on managing fear.

You might know it as your freeze, fight, flight response.

Fear is the emotion which keeps us alive, it alerts us to risk, which in turn shapes our behaviour away from that thing we are fearful of.  We tend to avoid things we fear, and that’s certainly the case with my tongue cancer.  I avoided seeing the dentist because I was scared of what they might find.

One of the ways we can mitigate fear is through creating certainty instead of uncertainty.  This paper will seek to help anyone under threat of oral cancer to navigate the process and reduce fear.

Here is what to expect if you are referred for an oral Cancer diagnosis (UK)

If you are facing an oral cancer investigation here is a summary of the likely steps you’ll follow once you’ve been referred by your doctor or dentist.

The process will start with your doctor or dentist contacting the hospital to arrange a meeting with a maxillofacial consultant.  This first meeting should be within 2 weeks.  If you haven’t got a confirmed date within 2 weeks speak up.

DIAGNOSIS

At the first meeting with the consultant, they’ll look feel and poke about in your mouth.  In addition to the usual blood tests, they will then probably activate two concurrent events following that meeting before deciding next steps.

  1. They’ll likely send you for a scan (which they’ll book for you) of your head neck and chest. (CT scan most Likely, rather than an MRI scan). This Is largely to determine signs of cancer outside the immediately affected areas.
  2. In addition, they’ll book you in for a biopsy and at that meeting they’ll cut a small bit out of your tongue out to examine. That’ll be sent to a pathologist and he/she will analyse. It’s really painful for about 8 hours. And bleeds a bit.  You’ll be fine the next day.

Each week in the hospital there is a multi-disciplinary meeting between surgeons, consultants, pathologists oncologists, radiographers, nurses, and hospital management. They carefully review all cancer patient cases.  Including yours.

When your CT scan and biopsy’s results are completed that team will talk about those results and your condition and they’ll collectively agree your treatment options and next steps.

After that internal hospital meeting the medical secretary will write or call you to get you booked in for your “findings” meeting, with the consultant.

This is the meeting where you will find out if you have a cancer, and how / if it can be treated.

At this finding meeting the consultant will tell you the results of the blood tests, scans, biopsy and pathology.

The cancer will be graded 1 to 4.  I think this means:

1 it’s local in a single place.

4 it’s elsewhere in your body beyond the local site in your mouth.

He/she will also advise you of the treatment options and recommendations of the multi-disciplinary meeting, along with his opinion of the exact next steps/treatment.

Other people from the multidisciplinary team may be with the consultant at these findings meeting to help support you with any questions whatsoever that you might have.

The ultimate purpose of this meeting is to agree with you the next steps.  If this includes surgery, he/she will happily discuss in detail what the procedure will be.  The consultant will likely be your surgeon

If it’s surgery they may also wish to discuss dates with you.  This is a priority cancer for the NHS, any surgery will be undertaken promptly. Coventry hospital perform one of these surgeries per week.

You would be wise to take a friend or family member or both to this meeting.  And maybe a notepad.  You’ll be given plenty of time and compassionate care.

A Macmillan cancer nurse will also be in attendance.  They’ll be your day to day contact Pre-surgery and you get their “any questions just call” phone number on that day.

The tests and result meeting should happen within a couple/three weeks of your first meeting with the consultant, once your results are in that committee they proceed swiftly.

TREATMENT

If it is cancer there is no cure, there is only treatment.  The best course of treatment is to have the cancer tumour removed.   When it’s gone you’ve no cancer anymore.

The options seem to be

  1. Do nothing. Could be because that they can’t/don’t need to do anything.
  2. Cut it out. The localised cancer.
  3. Cut out the offending area and if necessary and plastic surgeons to reconstruct your tongue using a piece of flesh from your arm or leg. Sounds odd but it’s called a Hemi (part) Glossectomy.
  4. Cut it out and radiology. As 2 above but also zap the affected area with radiotherapy.  Sounds like a god idea but the radiotherapy also damages healthy areas of the mouth. The need for radio therapy will be determined by the 1 to 4 scale of the original cancer diagnosis.

The earlier you get examined the lower that score and the less invasive the surgery.

  1. Radiotherapy only. Used if they can’t / don’t need to cut it out for some reason.
  2. If the cancer has spread (metastasised) there may also be a requirement for chemotherapy or other oncology.

My cancer was a rating of 2 because there were two areas affected on my tongue.  They were able to fully remove both in a single surgical procedure.  It had not spread beyond my tongue so no radiotherapy was needed.  Phew!

Finally, if you do have surgery, they will most likely take some lymph nodes from your neck to check more factually whether the cancer has spread.

Testing these lymph nodes provides them more accuracy than what they can pick up from the original CT scan.  This neck surgery is called a neck dissection. Results of the pathology come about 2 weeks after surgery.  Just as you are leaving hospital hopefully.

RECOVERY

After surgery you will likely spend a couple of days in high dependency care, then a further 10 days in hospital recovering.

It’ll feel quite traumatic, uncomfortable and challenging.  The immediate priority post-surgery is recovery. A final word of caution, if your surgery involves a tracheostomy you will find the first 5 days particularly unpleasant.  Once that breathing tube is removed, you’ll start to talk again, and then start to learn to eat again, which might take quite a few weeks to adapt to.

The swelling of the tongue takes a long time to heal.  It’s that which makes eating difficult.  You must get your calories in though, with loads of carbs and protein.

I was back doing light gum work after 6 weeks and felt pretty good and fit for part time work after about 12 weeks.

The first 2 years I felt physically perfect but mentally and emotionally it takes a while to really adapt. It’s a grieving process, the loss of something incredibly valuable to you.

I’m 3 years post-surgery and am required to go for default check-ups with my consultant to monitor my health.  The feedback of these visits is fed back into the multidisciplinary team.

I live a full, normal, healthy and happy life.  I can talk, eat, kiss and whistle.

Footnote:

Oral and neck surgery is some of the most sophisticated undertaken by surgeons.  It’s highly invasive and lengthy surgery requiring multiple surgeons and comprehensive aftercare.

There are a limited number of dedicated oral and maxillofacial surgeons in the UK so make sure you are treated by one who’s fully experienced in this field.

You’ll build a long-term relationship with your consultant, they’re always accessible to you. You’ll be under their care for 5 years or more, that’s longer than one of my marriages!

 

Your local doctor will be kept fully up to date with all meetings, findings and treatment plans.  They will happily explain any jargon to you using your hospital case notes.  Even if you are referred by the dentist it’s your local doctor who gets the updates on all your hospital going’s on, not the dentist.

You have the right to use ANY UK Hospital for your treatment, I would definitely want one with a large and dedicated oral and maxillofacial team. A Google search will tell you whether your hospital has these facilities.

Good luck.  God speed.  God bless.  And don’t be scared.

Paul Roebuck

Psychotherapist

Oral Cancer Patient Ambassador – Mouth Cancer Foundation

07838 371155

tonguecancerjourney@gmail.com

Facebook: @TongeCancerJourney

Educational Resources

Download a variety of free leaflets, posters and educational resources.

See More