FAQs
These questions have been submitted by head and neck cancer patients and their whānau. They have been answered by our Trustee, Dr Andrew Macann, Radiation Oncologist, and other clinical experts on our Board where indicated. Get in touch if you would like to send us a questions to add to this list.
Diagnosis
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Dr Andrew Macann: I think there can be a bit of information overload when you're first seen. It’s inevitable that there are details you won’t remember. Our clinical nurse specialists have a real role in the window between the diagnosis and starting treatment. They're a great resource who can help if there's any confusion about what the steps are going to be.
Dr Dean Ruske: This is a period of unanswered questions and anxiety. Treatment and investigation occurs quickly once the diagnosis is made. Important information can be provided by the diagnosing doctor, as well as other health professionals. Understanding the disease, treatment and side-effects is important.
Maintaining a diet and calorie intake before and throughout treatment is essential - though this can be difficult in head and neck cancer patients. Adequate nutrition directly affects your ability to complete treatment and recover/heal, as well as minimising side effects.
Understanding the psychological effects of cancer diagnosis can be assisted by discussion with allied health workers, clinical psychologist or nurses, and having personal support mechanisms in place during this time.
Adequately managing pain is also important. Your GP or specialist can assist with this.
Finally, a positive mental attitude during diagnosis, investigation, treatment and post treatment follow up period is essential.
Treatment
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In all of the departments throughout New Zealand, we have multidisciplinary meetings (MDMs). They run slightly differently from one hospital to the other, but as a general rule, we try to discuss every new patient with a head and neck cancer diagnosis in these meetings. This is regardless of whether a patient is initially seen in the private or public sector.
The MDM team includes surgeons, oncologists (specialist cancer doctors), pathologists (who can talk about what the features of the tumour are) and radiologists (who can talk about the scans that have been done). We have dentists and dietitians, because head and neck patients often have dental and dietary needs prior to or during their treatment. We often have a supportive team there as well, including speech therapists (kind of like a physio for the throat). Sometimes we'll have a palliative care representative too.
This means that we can have a discussion about what's the most appropriate treatment approach for a patient, and the patient can be confident that they're getting a consensus from all of the key people.
The two big factors that influence our decision about treatment are: firstly, which is going to give us the best chance of controlling the cancer. Secondly, we look at the functional outcomes - things like swallowing and speech. So, we take into account what treatment approach gives us the best tumour outcome, and the best functional outcome.
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Yes. As with a lot of cancers of the head and neck area, it depends how early someone presents with these cancers. If you present with an early tumour, which is small and hasn't spread to the lymph glands in the neck, often surgery is all that you need. For the more advanced tumours - where the tumour in the tongue is a little bit larger, or the tumour has spread to the glands in the neck - you often need to have both surgery and radiotherapy. If you’re more high-risk, you may need chemotherapy and radiotherapy.
We always tend to favour surgery as the first treatment option. Occasionally, people present with a really advanced tumour where we think surgery is not the best thing because functional issues might be a problem. In this case, we treat those with radiotherapy and chemotherapy as their main treatment.
It all really depends on the stage of the tumour. The early ones do well. With the more advanced tumours, there is a risk that they can have a recurrence, so they're monitored very carefully.
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We sometimes look at clinical photos during the multi-disciplinary meeting, especially if the patient's not there. That could be a clinical photo of a skin lesion, for example. Generally, patients are examined with the fibre optic laryngoscope - it’s kind of like a little telescope which can pass through your nose, have a look at the back of your nose, throat, and down to your larynx. That's recorded on video, so that we can see the tumour and use this record later on. This can be really helpful in providing information which is complementary to what you see on the scans.
When we're trying to define exactly where the tumour is, we take into account what we can see when we examine the patient, including that video, as well as the scans, in order to get a complete picture. A photo or a video is certainly very important.
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The current role of immunotherapy such as ‘KEYTRUDA’ in head and neck cancer is mainly in patients who have disease that has spread (this is what we call metastatic disease). It's also sometimes used if the disease has recurred.
In that context, it can be really effective. It does vary a bit, depending on what type of tumour you have. Some tumours, such as melanoma or some of the skin cancers have quite a high response rate to immunotherapy. With some of the more common head and neck tumours of the mouth or the throat, the response isn't as high - but if you do respond, it can be really effective. It's probably a bit less than a 50/50 chance that it will work in that setting.
The other benefit of immunotherapy is that it tends to be very well tolerated. With some patient groups, there may only be a 20% chance that they'll benefit, but it's still worth having to go.
Although it’s currently mainly used in advanced settings, there's a lot of interest in trying to bring immunotherapy earlier into the management. At the moment, the upfront treatment is still surgery, radiotherapy and chemotherapy, with immunotherapy further down the track.
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It’s not readily available in the public sector at present, though that may change in time. There are some patients with oropharyngeal tumours who can still have more conventional surgery in the public setting - if they have a small tumour and the surgeon can get good access. The advantage of robotic surgery is when the surgeon can’t get good access to the tumour.
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When we're planning radiotherapy, we’re always very mindful of making sure we spare the surrounding normal tissues as much as we can. Part of that is done by how we plan the treatment. We get a CT scan, and work out exactly where we want to treat. Then, we define a lot of normal tissue structures, including the mandible, the jawbone, the spinal cord, the eye and the ear. We then try to reduce the dose to those normal tissues.
As part of that, we sometimes put a tongue depressor inside the mouth to move the tongue away from the area that's going to receive the dose of radiotherapy. For example, if we're treating the roof of the mouth, it can be good to push the tongue down out of the way. Or if we're treating the side of the mouth, sometimes we use the tongue depressor to push the tongue to the opposite side.
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There are very standardised approaches regarding what type of surgery can be done at local hospitals, and what needs to go to a bigger hospital. Some of the smaller tumours can be managed at the local hospitals, whereas the more advanced surgery tends to be done in a big hospital. This is particularly where they're putting in a 'flap', i.e. removing tissue, then taking tissue from elsewhere to reconstruct that area.
With some types of surgery, we need to protect the airway because of the swelling that can occur after the surgery, so the patient has a temporary tracheostomy. These sorts of operations tend to be done in major hospitals.
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It does vary a little based on the scenario. For instance, if you've had surgery as your main treatment, the surveillance is different from if you've had radiotherapy as your first treatment.
When you have radiotherapy as your main treatment, we tend to do a PET scan three months after you've finished radiotherapy. The reason we wait three months is because the tumours can continue to shrink down once the radiotherapy is finished, and because the throat is inflamed from the treatment.
Hopefully, after that scan, you'll then go on to a more regular follow up. It's quite common to have a PET scan and it shows that it's responded, but it's not quite back to normal. This might mean we do another scan three months after that. It all just depends on the situation. Eventually, you'll get to the point where you're having a scan once a year.
Because you can visualise the area so well with head and neck cancer, the follow-up clinical exam (which is generally done by the surgeons) is really important as well.
Research
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There is a group of young people who don't have normal risk factors, like a smoking history, or signs of HPV in their tumour, who present with oral tongue tumours. We do see patients in their thirties and forties who present like this.
As to what’s the cause - we really just don't know. These cancers do tend to behave in a bit more of an aggressive way, so they tend to get treated quite aggressively. Most commonly, they're treated with surgery, and then we decide if they need radiotherapy or chemo-radiotherapy afterwards. But we still don't know why these young people without risk factors get these oral cancers.
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Dr Dean Ruske says:
In the head and neck, 'de-escalation' is the term used in the management of Squamous Cell Carcinoma (SCC) of the oropharynx. The term is used for HPV-positive SCC, a causative viral precursor to cancer in the upper aerodigestive tract, mainly the oropharynx.
The goal of de-escalation is to maintain the high cure and survival rates associated with traditional approaches, while reducing the incidence of both short and long-term toxicity.
This has come about as a result of the increased sensitivity of HPV related SCC to standard treatment protocols resulting in high levels of 5 year survival in this group of patients (>80%). Current treatment usually involves radiation therapy with or without chemotherapy for these tumours. Surgery may also be used for advanced cancer in this region. Both types of treatment can be associated with short and long term side effects resulting in reduced quality of life, psychosocial stresses including pain and reduced function.
De-escalation includes the use of reduced radiation dosage, addition of chemotherapy or more targeted immunotherapy agents or the use of surgery in order to treat the tumours and minimise side effects. Surgery in the head and neck setting is predominantly with Transoral Robotic Surgery (TORS) or Transoral laser Microsurgery (TLM).
Although looking very promising for the future there are many issues with de-escalation of treatment. Studies have used various protocols, often with small numbers of patients, various regimes and doses of drugs, various radiation dosing schedules and variable use of surgery.
There are many ongoing studies investigating de-escalation protocols and although promising for the future, de-escalation remains debated.
De-escalation in New Zealand:
Selected patients may be eligible for surgical treatment including TORS or TLM in NZ. At the present time TORS is available in Auckland with appropriately trained TORS surgeons and appropriately selected patients. Reduced radiation dosing regimes are also used in selective patients. Use of immunotherapy, which may be appropriate in treating recurrent or distant metastatic disease is limited in NZ mainly due to lack of government funding, cost and access to the agents.
At the present time, ongoing clinical trials are numerous and likely to further shed light on this topic and the coming years.
Care
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Dental care is a major issue for patients having radiotherapy. When we're first planning your treatment, the dentist will often assess your teeth and identify if there are any that could cause problems down the road. Sometimes, you may need dental work before starting treatment.
Radiotherapy itself doesn't damage teeth, but it does affect the salivary glands and makes the mouth dry. You've got big salivary glands on the side called the parotid, and you've got smaller ones under the jaw - the submandibular and the sublingual gland. These can be affected by radiotherapy, but throughout the whole of the mouth and throat you've also got minor salivary glands that radiotherapy can also affect.
So, all patients end up with a certain amount of dryness after radiotherapy, depending on how big a volume we're treating. It can get a little bit better over the subsequent months, but you will always have some degree of dryness.
This is a problem for the teeth, because saliva is very important for dental health - saliva 'remineralises' the teeth. If you have a dry mouth, you're more prone to dental decay, and faster dental decay.
Because of this, we ensure any necessary dental work is done prior to treatment. During the period after radiotherapy, it’s also important to be proactive about your dental health, including having regular hygienist appointments, to ensure that your dental care is maintained. You should ideally do this for about six months. The more proactive you are about your dental care, the better.
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There are artificial, commercial salivary products available to help manage dry mouth. These are generally available over the counter. They're something that you can try, and see if they work for you. Or you could try other simple things, like coating the mouth with olive oil before you go to bed.
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Radiotherapy and chemotherapy both have a substantial impact on taste during treatment, and patients can get really unpleasant tastes. The advice we give during radiotherapy is that eating isn’t something you’re doing for enjoyment during that time, but rather is more like a medicine. You need it because that's how your body's going to get the energy to help it heal.
Generally, once the radiotherapy finishes, the unpleasantness tends to go away reasonably quickly - within a few weeks. Then you're left with the blandness in the taste which slowly improves over a period of months. Six months after radiotherapy, taste should be improved, and 12 months after your radiotherapy, it should be better still. Again, it's influenced by how big an area of the mouth and throat is receiving the high radiotherapy dose, so some people’s recovery will be faster than others. When it gets to around a year, this will provide a baseline for where things will be, and hopefully it will be getting back towards normal. Though, certainly for some people, it doesn’t return to normal.
There’s a small group of people who have more significant problems than that. That tends to be people with mouth cancer having really high dose radiotherapy. They might have a real sensitivity on their tongue, particularly to things like acidic or spicy foods. That can be a chronic problem - but that’s the minority of people.
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There are no particular issues with alcohol after treatment from our [radiation oncology] point of view.
There can be issues with taste obviously, and common sense advice about moderation.
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The PEG tube is a little plastic tube that actually goes through the abdominal wall and straight into the stomach. It sounds weird, but patients who've had them get familiar with them and they can learn how to use them. We tend to use PEGs if we think that the severity of the side effects from the radiotherapy are going to be a problem for a long period of time, because you need to get your nutrition during treatment.
We're very mindful that part of the cancer management is not only treating the cancer, but it’s the rehabilitation process afterwards. Swallowing, and trying to get your diet back to as close to normal as possible, is a key part of that. I always tell people that they should try to eat as much as they can during treatment. We use a lot of nutritional supplements (types of drinks which are easier to manage), but I always encourage patients to try and have something a little bit more solid. Even just a small amount of weet-bix or pureed fruit, because that uses the swallowing muscles a bit more.
Swallowing is a bit of a 'use it or lose it' kind of thing. If you imagine you fall off your bike, you injure your shoulder. The physio is going to get you to do exercises to stop the shoulder from stiffening up. Swallowing, if anything, is even more complicated. There are so many muscles that kind of coordinate together to make swallowing work. Radiation makes the whole area very inflamed, so it's easy for things to stiffen up. So the more you can eat a little bit during treatment, the better it is.
If you have or need a PEG, ideally it's not that everything's going through the PEG. Maybe 90% can go through the PEG, but you should still try and eat that 10% just to keep the swallowing ongoing. This means you're getting the nutrition you need through the PEG, but still trying to maintain that swallowing function.
If you do need a PEG during treatment, the vast majority can remove it by about three months after treatment. Very occasionally people need to be dependent on a PEG long term, but that's a small proportion. The more proactive you are with having a little bit to eat and swallow, the shorter the time-frame that you'll need the PEG for.
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I think exercise can definitely play an important role. I haven't seen any specific research in head and neck cancer, but certainly in other types of cancer, such as breast cancer, there's a lot of research about the benefits of exercise during therapy. It does come down to what you feel able to do - but some kind of exercise during treatment is a really good idea.
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GPs have a role in managing the recovery phase after treatment. Some patients will need to be on pain relief for quite some time. We always try to get them off pain relief as quickly as we can, but it can still take two or three months, or occasionally longer, so the GP is key in that phase. Having a close relationship with your GP is really important.
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The experience will be very different for different patients. As a rough guide, it will be at least a couple of months after radiotherapy that you get a sense that things like fatigue are getting back to normal. By a couple of months, the more acute side effects, like the throat pain, will also be better.
There’s also the issue of financial stress and needing/wanting to get back to work. Some people are able to go back part-time, but for others that can be a challenge.
Then there’s the psychological impact of treatment - it can affect relationships, your sense of self can be dramatically altered. For most people eating is impacted to some extent. You may be able to swallow, but you may have to eat slowly. Or, you might only be able to eat softer food, which can make you feel self-conscious.
There are patient support groups to reach out to where you can find other people who have shared experiences. The Cancer Society also provides support. But recovery is a real challenge with head and neck cancer.