Mouth cancer

Speed and quality of recovery from mouth cancer depends on the treatment (from relatively minor surgery to extremely complex surgery and radiotherapy), on personal circumstances and support, and last but not least on attitude.

For everyone the diagnosis of mouth cancer is a shock psychologically, and the treatment is a shock, of varying degrees of magnitude, physically and physiologically. We can only hope to paint a general picture in this timeline section. We try to do this by describing three different scenarios:

These three scenarios can only give a crude, general overall impression. More detailed information as it applies to an individual and their specific condition and treatment, is best obtained from the consultant(s) and cancer nurse specialist(s) in charge.

After relatively minor surgical intervention

After relatively minor treatment, for example a wide local excision of a tongue cancer with or without neck dissection (we use the term ‘minor’ in a technical sense, to distinguish treatment range, it is obviously not ‘minor’ to a patient) the following course of events will be experienced to some degree. The following description assumes a local excision with (or without) selective neck dissection, no reconstruction or post-operative radiotherapy.

Short term

At least an overnight stay in hospital. If the excision is combined with a neck dissection a drain (or two) will be inserted and a stay of several days in hospital is required until there is minimal drainage (less than 50 ml in 8 hours). The mouth will feel raw and sore. This will need painkillers  and the mouth has to be kept as clean as possible. If a laser has been used to excise the cancer, the area which looks burnt has to be kept clean. This is called an eschar and is basically a third degree burn which will eventually fall off leaving a healed area. Sometimes the area is sutured with dissolving stitches. This often feels very tight. The stitches dissolve and it is actually not unusual for the wound to open up to some degree during healing. About 10 % of patients will have some bleeding from these kinds of wounds during the early post-operative period.

During this time eating and drinking can be a substantial concern and quite uncomfortable. Our section about oral food intake explains some of the things that can be done to help during this time.

The neck may be operated on in two different ways (or not at all) in relatively ‘minor’ operations.

One way, felt by some to reduce the overall burden of surgery to patients, involves taking only one lymph node out for examination by a specialist pathologist. This is called sentinel lymph node biopsy. The idea is that this node is the first one a mouth cancer will spread to. This is worked out using a radioactive isotope. This is injected into the cancer at its presenting site, the isotope drains to the first draining lymph node for that cancer site and that node is confirmed by measuring the presence of the isotope. Sometimes a dye is used but this has largely been superseded by the isotope method. The node is marked on the skin and arrangements made to remove the lymph node.The node is then examined histologically. This whole process can take a week. If the node has no cancer, no more surgery is needed. If it has cancer, then a conventional neck dissection is undertaken within a couple of weeks. This is logistically complicated in the UK and not practiced everywhere (it has been recommended by NICE (The National Institute for Health and Care Excellence), but not by several leading national and international head and neck cancer organisations).

Another way is to remove the most likely nodes to contain cancer at the same time as the tumour is removed. This involves the risk of unnecessary surgery if there are no cancer deposits in the removed nodes but avoids the delay and possibility of a second operation. If carried out, there will be stitches or metal staples in the skin of the neck for 10 days and, as mentioned above, drains which may require a hospital for 3 to 5 days. The biggest problems likely are stiffness of the shoulder and numbness of the skin over the operated area. Pain is not usually a problem.

Medium term

Within a couple of months, the eschar will have fallen off, leaving a clean scarred wound which usually feels numb. Taste may be affected to a greater or lesser degree. Pain will usually have gone. Talking should largely have returned to normal.

Shoulder stiffness can persist and the physiotherapy exercises which may not have seemed so important in the early phase should be carried out regularly. The numbness is usually less of an issue.

Long term

With this sort of surgery, long term problems tend to be minimal and between 3 and 6 months eating, drinking, talking and use of the shoulder should all have reached a stage of ‘new normal’. That is, they may not be exactly what they were before the cancer developed, but a situation will have been reached where everyday functions can be carried out in a slightly different but acceptable way. The scars will remain, as will areas of altered sensation but most people find ways to carry on with their life in the way they wish around about this time.

After major surgical intervention and reconstruction

This kind of surgical intervention is quite different and will involve anywhere from 1 to 2 weeks in hospital for highly complex surgery involving removing the cancer, treating the draining lymph nodes and reconstructing the defect created. Of major importance is healing to a degree so that post-operative radiotherapy (often but not always required or recommended in this situation) can start approximately 6 weeks after surgery. There should be substantial input from the entire head and neck cancer team of surgeon, clinical oncologist, cancer nurse specialist, speech and language therapist and dietician prior to surgery. Any issues related to drug or alcohol dependency should also be addressed and may require a period of time in hospital prior to surgery.

Short term.

This is major surgery and will require admission to hospital usually at least the day before surgery, although it may be considerably before in the case of in-patient detoxification if this is needed. Around this time, it is likely to meet the anaesthetist(s), if that has not happened earlier. Many centres will spend the entire day performing the surgery and this is then followed by an overnight period in the intensive treatment (care) unit where monitoring under heavy sedation or anaesthesia is carried out overnight. It is usual for this only to be for one night and the rest of inpatient care to be carried out on the admitting ward.

Each day would normally see a lessening of the monitoring and care requirements. For example, invasive blood pressure monitoring usually stops on the first post-operative day, intensive flap monitoring decreases over the first three days, drains are usually removed ‘when they stop draining’ (usually less than 50 ml a day) but this is usually around the fifth day. Tracheostomies are usually removed within this time period as well (there is a variable requirement at this stage to confirm it is safe to swallow saliva without aspiration.

Mobilisation starts variably between day 2 and day 5. Central venous lines are usually removed around day 2 or 3 but may be kept if securing a good arm vein is difficult. By the second week most drains should be removed and an attempt at normal feeding resumed (it is usual to avoid food and non-clear liquid crossing the operation site in the mouth by using nasogastric or percutaneous gastrostomy feeding. Intravenous drips have usually been stopped or reduced to a single peripheral cannula by this stage.

Finally, full mobilisation, confirmation of a safe swallow (one which does not cause aspiration of liquids), removal of nasogastric tube (although percutaneous gastrostomy may be left longer term) is carried out and discharge home with appropriate support planned.

Medium term

All the aspects of the less major surgery apply. In addition, the wounds created by tracheostomy and flap and graft harvest each have their own problems and are specific to the site of surgery.

Importantly during the first 6 to 8 weeks it is expected that the tracheostomy site will heal, the sutures will all dissolve (or have been removed prior to discharge) and the wounds on the neck, flap donor site, mouth and face will have achieved initial healing. Mobilisation is important and a small degree of recovery of energy (in comparison to what was ‘normal’ before) should be achieved.

Long term

All the issues with less major surgery again apply, but now has to include the full recovery of speaking and swallowing after tracheostomy and the completely different sensations of non-natural tissue inside the mouth (the mouth is not meant to be lined with skin and although sensation recovers to a degree it is never the same. Interestingly, almost everyone learns to live with this).

The impact long term of the various donor sites for flaps and grafts vary depending on site but a degree of altered sensation, relative weakness in grip strength or limp can last for months or even be permanent. As with many of these anticipated post-operation difficulties, most people adapt around them to continue their life in a different but satisfactory way.

After major surgical intervention, reconstruction and radiotherapy

Short term.

All the above applies, but with an emphasis on being healed in time to start radiotherapy.

Medium term

Early but complete initial wound healing during the initial 6 to 8 week period is important to help with the onset of radiotherapy. Radiotherapy is a slow build-up of physiological challenge, in complete opposite to the surgical treatment which is all up front followed by gradual recovery.

It is important that there are no open wounds before starting radiotherapy (even more so if chemotherapy is being added to the treatment) as the risk of infection is high and failure of the wounds to heal becomes a real risk.

The major impact of the radiotherapy treatment comes in the final weeks and potentially for months after completion where the skin feels like very bad sunburn, candida superinfection is common and a dry mouth becomes a substantial problem.

Long term

In addition to the major and minor surgical effects, therapeutic radiation carries lifelong tissue changes. Long term skin sensitivity to sun is a lifelong issue. A dry mouth is very common and a variety of techniques have been designed to palliate (but not cure) xerostomia. Limited opening of the mouth is commonplace secondary to scarring and fibrosis of the muscles around the jaw.

As a consequence, the sense of taste and ability to chew and swallow can be affected and have a substantial impact on quality of life.

The sections on help and selfhelp aim to inform about a variety of non-medical strategies to improve some of these, usually inevitable consequences of treatment of mouth cancer.