High Grade NeuroEndocrine Carcinoma of Ethmoid Sinus

The Dietitians - Head & Neck Specialists - Drug Treatment Specialists

When you begin your radiotherapy treatments you are assigned certain specialists to help treat the side effects you get from radiotherapy treatments. The specialist, in my case, comprised of a dietitian, a speech therapist and two head and neck specialists.


When you hear the words 'Speech Therapist' you would be forgiven for believing that all a speech therapist does is rehabilitate people who have lost their voice. Furthermore: You might think as a cancer patient that your oncologist is telling you that you need a speech therapist because they are expecting you to lose your voice during your radiotherapy treatment. That thought is quite normal.

As a cancer patient you need to take that thought with a pinch of salt. Meaning: Yes you might get a tightened jaw/mouth due to a build up of scar tissue, but at the same time your oncologist has assigned you a speech therapist in order to maximise usage of your jaw/mouth movement regardless of what happens to your jaw/mouth.


Your speech therapist will give you jaw/mouth/neck exercises to perform up to five times a day in order to maintain what movement you have at the beginning of your radiotherapy treatments. They will measure the size of your mouth when it is wide open, which is normally the equivalent of you being able to fit three fingers in your mouth, and then hope throughout your radiotherapy treatments you can maintain that size via the exercises.


The problems I had with these exercises and the speech therapist's theory in general was that they must of been thinking of me as an old man and did not appear to understand how their exercises can cause more troubles. Meaning:

  1. Why would I want to stretch my neck all the way back, to stretch my throat muscles, when my throat muscles were already sore? If I have a serious leg injury for example, I do not make it worse by running on it or cycling; so why should I further hurt my throat muscles?
  2. They must of thought of me as an old man who naturally does not move his mouth that much (i.e. stereotyped me as an old man that does not have friends to talk to, does not naturally eat three times a day with snacks in-between, just watches tv all day long and/or does not laugh and talk a lot). I am quite the opposite. I laugh and talk a lot with family and friends and eat regularly; even with cancer.
  3. With a burning/ulcered tongue/mouth/lips how can you do many of their exercises? When you have those symptoms it is difficult to eat food and drink, never mind do mouth stretching exercises. Sometimes these so-called specialists ask you to do the impossible, think of you as a robot textbook case instead of a human patient.


I did not do any of these exercises, mainly because my particular radiotherapy treatment (map) did not beam my jaw/mouth joints; something the speech therapist should of known about. This meant I could still open my mouth with three fingers inside it.


When you are assigned a dietitian you may think you are going to be given heaps of advice about eating and drinking, which may be true for someone who does not include 'fruit and veg' in their daily meals but not true for someone who does.

In my case I was already including 'fruit and veg' in my daily meals due to my diabetes (type 2) and exercise (i.e. cycling), so I was never told "Do not eat that", "Eat this instead" and "Drink that as an alternative" for example. In fact I was always told "You are doing everything correctly. Keep it up".


I found the whole dietitian thing a waste of nhs resources. Most, if not all, of their advise and information can be found on the internet (ironically on the nhs website), in diet books and so on. Furthermore, a lot of it is common sense.

At one point my dietitian was discussing how it is important to maintain leg muscle in terms of not resting in bed all day. She then went on to say that once the leg muscle was gone.....

First of all, how can my leg muscles go when I already told her I walk a lot and go on a treadmill for 30 minutes every other day. Secondly, what happened to the p.o.w, where they went to skin and bone. Their leg muscles returned. What about those who are bed-ridden in the hospital or at home for months. They recover their leg muscles. It is those kind of comments that make me lose confidence in these so-called specialists. They talk crap sometimes.


Every Wednesday I had to consult with a dietitian, a speech therapist and a head and neck specialist whereby I was just repeating myself. "I still eat this and that", "I still take this and that drug", etc. The only thing I got out of all the consultations were the nutricional milkshakes and pain killers. With this in mind: Why did they not just call or text me on a Tuesday for example and ask "Is everything the same as last week?" and "Do you have enough medicine?". If yes, "We do not need to see you tomorrow". Otherwise, "We need to see you tomorrow". This is another typical example of where the nhs is mismanaged.


The head and neck specialists I had, one of which was fine and the other rubbish, both contradicted each other in terms of their advice. One for example said use the mouthwash when needed while the other said only use before eating. One said I could take ibruprofen every four hours for as long as need be while the other said she would not recommend using it for more than three days because it could mess up my stomach; even though my gp said it was ok to use ibruprofen for longer.


You also need to consider what these specialists can really do, or not do, for you. As an example I asked them if they could take out (reduce) the burning effect on my tongue and at the back of my throat, which felt like I had eaten a hot chilli pepper with a cheese grater; very painful indeed. All they could offer were mouthwashes and rinses that actually dried my throat further and/or made it more sore. They did not realise how much my tongue and throat had become sensitive, even though I told them many times over.

In the end I just did what my body and gut instinct told me, which was to take the ibuprofen that was helping in the reduction of my throat swelling and use the difflam mouthwash when need be to ease the burning and soreness. It all boils down to knowing your own body and mind whereby you listen to those first rather than your so-called specialists first. It is sad to say, but I believe if I had listened to all of my so-called specialists I would have been in more agony.

Ironically, they could not even find a medicine to take out (reduce) 100% my pains when on the same hand they were saying in 'palliative care' they give a really strong pain killer. This leads me to doubt if they could really help me in 'palliative care'. Why didn't they prescribe me that pain killer while on radiotherapy treatment?


Do NOT let the specialists pressure you into doing anything you feel is not right for you and/or your way of thinking. Sometimes you have to argue your reasons with them as to why you are not happy to do something. They may give you reasons why you should do them, but you can always prove them wrong, challenge their reasonings/theory and/or get a second opinion from your gp (or the internet!).

Always Remember: Many, if not all, specialists are just textbook. They follow their manual only. They are NOT a cancer patient, so they have no authority and no experience with regards to the pains you have suffered or will suffer.