Resources

Regular follow-up care is very important after treatment for head and neck cancer to make sure that the cancer has not returned, or that a second primary (new) cancer has not developed. Depending on the type of cancer, medical check-ups could include exams of the stoma, if one has been created, and of the mouth, neck, and throat. Regular dental exams may also be necessary.

From time to time, the doctor may perform a complete physical exam, blood tests, x-rays, and computed tomography (CT), positron emission tomography (PET), or magnetic resonance imaging (MRI) scans. The doctor may monitor thyroid and pituitary gland function, especially if the head or neck was treated with radiation. Also, the doctor is likely to counsel patients to stop smoking. Research has shown that continued smoking by a patient with head and neck cancer may reduce the effectiveness of treatment and increase the chance of a second primary cancer.

How Can People Who Have Had Head and Neck Cancers Reduce Their Risk of Developing a Second Primary (new) Cancer?

People who have been treated for head and neck cancers have an increased chance of developing a new cancer, usually in the head, neck, esophagus, or lungs. The chance of a second primary cancer varies depending on the site of the original cancer, but it is higher for people who use tobacco and drink alcohol.

Especially because patients who smoke have a higher risk of a second primary cancer, doctors encourage patients who use tobacco to quit.

Regular check ups and monitoring are necessary to detect any secondary (returning) cancer.

Preserve the Quality Life with Prosthetics

Sometimes, especially with cancer of the oral cavity, a patient may need reconstructive and plastic surgery to rebuild bones or tissues. However, reconstructive surgery may not always be possible because of damage to the remaining tissue from the original surgery or from radiation therapy. If reconstructive surgery is not possible, a prosthodontist may be able to make a prosthesis (an artificial dental and/or facial part) to restore satisfactory swallowing, speech, and appearance. Patients will receive special training on how to use the device.

Surgery and Rehabilitation to Treat Head and Neck Cancer

Your cancer care team will diagnose and evaluate your head and neck cancer. After evaluating the type and stage of head and neck cancer, they may decide that surgery is the best treatment option. If the cancer care team selects surgery as the best treatment option, the treatment goals will be to remove as much of the cancer as possible in addition to preserving form and function of surrounding anatomic structures. If surrounding anatomic structures are damaged during the removal of the tumour, reconstructive surgery will be performed to restore the structure, function and cosmetic appearance of the structures that were removed. For example, if there is missing tissue as a result of the surgery to remove the tumour, donor tissue can be transferred from another location, such as the leg or forearm, to replace it.

Navigating types of head and neck cancer surgeries

Learn about cancer removal surgeries, reconstructive surgeries and surgeries to aid breathing and eating on the additional pages in the Resources section.

Ablative Surgeries

This section reviews the various types of procedures a surgeon may perform to remove head and neck tumours, such as a glossectomy (removal of a portion of or the entire tongue), laryngectomy (removal of a portion of or the entire voice box) and mandibulectomy (removal of a portion of or the entire jawbone).

Reconstructive Surgery

This section reviews procedures a surgeon will perform to restore form and function after removal of tissue for the treatment of the tumour. For example, free flap surgery is the transfer of tissue with an artery and vein from one part of the body to another. Another procedure a surgeon can perform to return form and function is nerve grafting (attaching the ends of nerves together to reinnervate a denervated muscle or gland).

Surgeries to Aid Breathing and Eating

This section discusses surgeries that are performed to help head and neck cancer patients eat, such as the placement of feeding tubes or performing a tracheotomy to facilitate breathing.

Radiation therapy is treatment of cancer with ionizing radiation.

In the most basic sense, ionizing radiation damages the DNA of cells as they try to divide and replicate. Cells that are dividing and replicating faster are more susceptible to DNA damage from radiation therapy. Therefore, since cancer cells are rapidly dividing, they are more likely to be destroyed by radiation than normal cells in the body.

However, some normal cells in the body divide and replicate more frequently than other normal cells in the body; for example, cells lining the mouth and throat are constantly regenerating, as are skin cells. Therefore when you are treated with radiation for a cancer inside the mouth or throat, one of the major side effects is mucositis, or inflammation of the mouth and throat lining.

One advantage of radiation over surgery is that it can be administered on an outpatient basis, which means you will not have to be admitted to the hospital. Also, it avoids the risks of general anaesthesia during surgery, which is particularly important in patients with many medical problems or even just one severe medical problem. Also, radiation therapy as a treatment allows for the possibility of organ preservation; for example, patients can be treated for cancer of the larynx (voice box) without the need to remove the larynx.

One disadvantage of radiation is that patients need to come into a treatment facility five days per week for six to eight weeks (though this schedule can vary). Also, there are several side effects, both immediate and long-term, that need to be considered.

When is radiation therapy used?

The selection of the best treatment for you is a decision that is made after a discussion with your doctor. The decision will depend on many factors, including the type of cancer, the location of cancer, previous treatments and your other medical problems.

In general, radiation therapy is used for head and neck cancer in a variety of settings:

• Definitive radiation therapy (with or without chemotherapy):Definitive radiation therapy means that the treatment of the cancer is radiation. It can be combined with chemotherapy, which is called definitive chemoradiation therapy. The advantage of this approach is that it allows for organ preservation in some cases. If there is evidence of persistent cancer, or if the cancer returns in that very location, the next step for treatment will be surgery to remove the cancer.
• Adjuvant radiation therapy (with or without chemotherapy):This is the use of radiation therapy after surgical removal of all the obvious cancer. Carefully planned radiation after surgical resection has been shown to decrease the chance of the cancer coming back. This is probably because the radiation kills any microscopic cancer cells that were not obvious during the surgical resection. In some cases, post-operative radiation might be combined with post-operative chemotherapy to further decrease the chance of cancer returning after surgery.
• Neoadjuvant radiation therapy (with or without chemotherapy):This strategy is used mainly in clinical trials or certain cases of advanced disease. In neoadjuvant radiation therapy (with or without chemotherapy), the non-surgical treatment is given, and then surgery is done afterwards. This allows pathologists to study the response, and if there is any cancer remaining, a surgeon can remove it.
• Palliation of symptoms:When cancer has spread to distant sites, or when all standard treatment measures have failed and additional surgery is not an option, radiation can be used to palliate symptoms (which means make a person feel better or prevent a major complication that could impact quality of life). An example of this might be cancer that has spread to the bones of the spine; this can be quite painful, and radiation can treat the tumour there without making a patient go through a surgery.

Types of radiation therapy delivery methods

There are several different ways to administer radiation therapy. The two main techniques for most head and neck cancers are external beam radiation therapy and brachytherapy.

Standard external beam radiation therapy: This is the main form of radiation therapy for head and neck cancer. Either X-rays or gamma rays are used in standard external beam radiation therapy. The current standard of care in delivering external beam radiation for head and neck cancer is to use intensity-modified radiation therapy (IMRT). In a basic sense, this is a way to adjust the dose delivered in over 100 thin beams of energy in a three-dimensional space. By adjusting each beam individually, a radiation oncologist can design a plan that gives little radiation to normal tissue and maximal radiation to cancerous tissue. These decreases, but does not eliminate, side effects of radiation therapy when normal tissue is affected.

A few weeks prior to starting radiation therapy, you will undergo a simulation session. In this session, you will lie on a hard-flat bed and undergo a CT scan. Contrast might be injected into your veins for this scan. A technician may make some markings on your skin. During this session, a special mask will also be created just for you; this is to make sure your positioning is consistent each day you come for treatment, and the radiation is administered as accurately as possible.

The images from the CT scan will be analysed by your radiation oncologist and a team of scientists so they can design a treatment and dosage plan personalised for you and your tumour. These plans are created and checked several times to ensure they are correct. It can take about a week to create the right plan for you.

The exact frequency and length of time of your treatment visits will be determined by your radiation oncologist, but a typical treatment will be five days per week for approximately six weeks. Each visit takes less than fifteen minutes inside the machine.

Brachytherapy: This is a form of radiation in which the source of radiation, usually a tiny radioactive “seed,” is implanted very close to or within the cancerous mass. In contrast to external beam radiation therapy, in which beams of photons are shot through your skin, brachytherapy uses needles (catheters) placed through your skin to the target area. The radioactive implants can be temporary or permanent.

The main advantages of brachytherapy are that more of the radiation can be delivered to the targeted tumour while sparing normal tissue, and that the radiation is administered continuously, which is better for slow-growing cancers. The disadvantages of brachytherapy are that the tumour must be well defined because radiation cannot be delivered as effectively to poorly defined growths.

Brachytherapy catheters or seeds are placed in the operating room while the patient is completely asleep. They are positioned such that the area of each implant that emits radiation sits immediately next to the targeted cancerous tissue.

For the placement of brachycatheters, a surgeon might perform a tracheotomy once the patient is under anaesthesia; this is just a precaution in case there is any significant swelling or bleeding that might cause difficulty breathing. This is commonly performed when treating cancers in the base of tongue. The tracheotomy tube is typically removed after a few days. Once the patient is asleep, the radiation oncologist will proceed with placing the catheters. The catheters are placed through the skin and positioned in such a way that the area that emits radiation is positioned within the area of interest. Once the required number of catheters is in place, the patient will awaken and be taken to the recovery room. The next step will be to load the catheters with a radiation source. This will be done in a private room to limit exposure of the clinical staff or other patients to radiation. Currently, for the head and neck, the brachytherapy catheters can be left in place for about five to seven days to deliver a substantial dose of radiation, or they can be used as a boost to a very specific area for about two to three days after giving external beam radiation.

Some additional types of radiation therapy that you might encounter include:

Intra-operative radiation therapy (IORT):This type of external beam radiation therapy is a high dose of very targeted therapy directed at a specific area that is at risk of harbouring microscopic cancer cells after all the obvious disease has been removed surgically. In the head and neck it is used in a few select centres, mostly in patients who have extensive cancer that has returned after previous radiation therapy, or less commonly in very locally advanced cancers that are at high risk of recurring despite maximal surgery and external beam radiation.

In this technique, after surgical removal of all obvious cancer, the radiation oncologist will enter the operating room and place an applicator in the area where microscopic cancer cells are likely to be. Along with a team of scientists, the radiation oncologist will devise a treatment plan and use a mobile linear accelerator to administer the radiation over a period of about 30 minutes. This must be done in a special shielded room with cameras to monitor the patient asleep on the operating room table. Intra-operative radiation is generally considered safer than administering an additional dose of external beam radiation therapy. This is because normal tissue all around the tumour bed can be pushed out of the way, retracted, and shielded. Also, the radiation in IORT is administered to a very focused area where there is concern for residual tumour. There is no standard dosage that is administered with IORT, but it typically ranges from 10 to 20 Gy.  Taken together, in highly selected cases, the goal of IORT with salvage surgery is to give the best chance of curing recurrent cancer while lowering the risks of a major complication. This is not standard care currently. Studies are ongoing to determine the exact role of IORT for recurrent cancer in the Head and Neck.

Neutron beam radiation therapy:This type of external beam radiation is only available at a few sites in the world. In theory, the higher energy neutron beams (as opposed to the lower energy photon beams) have greater cell killing capability per dose and might be better in overcoming radio resistance. This is particularly important in large tumours with areas of low oxygen and in large slow-growing tumours. For head and neck cancer, neutron beam radiation therapy remains experimental and can be considered for a select few unresectable salivary gland cancers (such as adenoid cystic carcinoma).

Proton beam radiation therapy:This type of external beam radiation is only available at a few centres around the world. Proton beam radiation therapy uses protons (instead of photons) to kill cancer cells. The advantage of using protons (as opposed to X-rays or gamma rays in the photons of standard external beam radiation) is that they allow for more precise delivery of radiation than even standard X-ray-based external beam radiation with IMRT. This should result in less damage to normal tissue and thereby decrease side effects. This is still an extremely expensive technology that needs more study before it will become mainstream for treatment of head and neck cancers.

Radiosurgery:Though called radio- “surgery,” this is really delivery of very tight beams of radiation from multiple different directions to focus on a very specific target area. It is used mainly for benign disease, including brain tumours. It is not a major form of treatment for head and neck cancers.

Radioactive iodine:This is a form of radiation that is NOT external beam. This is used to treat certain stages of well-differentiated thyroid cancer (as well as some cases of benign thyroid disease). It works on the premise that thyroid cells use iodine, so when a patient drinks a radioactive form of iodine, the thyroid cells will take up the iodine and be destroyed. In theory, this should destroy thyroid cells anywhere in the body. For this to be effective for thyroid cancer, any thyroid tissue that can be removed surgically should be removed prior to administering radioactive iodine. Radioactive iodine is administered as a drink or a capsule. Radioactive iodine should not destroy normal tissue because most normal tissues do not take up iodine. Side effects of radioactive iodine might include dry mouth, nausea and fatigue; some patients also complain of a metallic taste in the mouth. In addition, you will need to take some special precautions after treatment.

Side effects of radiation therapy

There are number of side effects of radiation therapy. The likelihood and severity of complications depends on several factors, including the total dose of radiation delivered, over what time it was delivered and what parts of the head and neck received radiation.

Xerostomia (dry mouth):The most common long-term side effect of radiation therapy for the treatment of head and neck cancer is xerostomia (dry mouth). It occurs when salivary glands are radiated or in the line of radiation. Aside from being bothersome to patients, including making it difficult to eat and speak, there is great risk of dental cavities and dental disease because saliva helps prevent dental disease. While the incidence of xerostomia is lower with new technologies such as intensity modulated radiation therapy (IMRT), in which the radiation therapist can more precisely control how much radiation is given to different parts, this complication still remains. Patients learn to manage with this in several ways, including frequent drinking of liquids and using artificial saliva preparations. Also, certain medications given around the time of radiation might lessen the severity of xerostomia (e.g. pilorcarpine, amifostine).

Osteoradionecrosis (bone death):This is necrosis (or death) of bone that has been exposed to radiation. The bone often becomes exposed through the skin or mucosa and can progress to an actual fracture of the bone. Osteoradionecrosis (ORN) can cause severe pain as well as chronic and persistent infections. In ORN, trauma (such as removal of bad teeth within a jawbone that has poor blood supply from radiation) can lead to all the symptoms of ORN. If you need dental work after head and neck radiation, you should consider seeing a dentist who is familiar with the treatment of ORN.

The main treatment of ORN is really prevention. All head and neck cancer patients who will receive radiation should see a dentist before treatment to make sure the teeth are in the best possible shape; any diseased teeth should be removed approximately three weeks or more before starting radiation treatment. After radiation, patients should take very good care of their mouths, including frequent cleaning and fluoride treatments. Once ORN sets in, treatment might include antibiotics, frequent debridement, and sometimes even hyperbaric oxygen dives. At some point, you might require a major resection of all diseased bone with a reconstruction using a microvascular free flap.

Odynophagia (and mucositis): This is pain with swallowing. It can be caused as the mouth and throat lining starts sloughing off and becomes inflamed (mucositis). It can be treated by swishing and swallowing liquids that numb the pain, or in some cases with strong pain medication. Rarely, if a patient is not able to eat or drink for an extended period of time, a doctor might suggest placement of a feeding tube until the patient gets through the painful phase.

Skin changes:Patients will usually lose hair in the region that received radiation. Also, there may be some slight colour changes to the skin or mild swelling.

Hypothyroidism:The thyroid gland is located immediately in front of many parts of the throat. Therefore, damage to the thyroid gland can occur following radiation for head and neck cancers. This will result in hypothyroidism, or an underactive thyroid, which can be quite delayed in its presentation. The doctor should routinely check thyroid function tests, especially with new symptoms such as new onset tiredness and significant weight gain. This can be effectively treated by taking a thyroid hormone substitute pill once a day.

Pharyngoesophageal stenosis: This can be another delayed problem caused by radiation. Pharyngoesophageal (PE) stenosis is an area of narrowing in the pharynx or esophagus. This narrowing can make it difficult to eat, particularly solid food. If the PE segment becomes completely closed off, the patient won’t be able to eat or drink anything by mouth and will require a feeding tube placed directly into the stomach (gastric tube). Treatment of this complication might include frequent placement of dilating catheters down the throat to stretch open the narrowed segment or surgical removal of the blocked segment with flap reconstruction.

Secondary cancers:Paradoxically, even though radiation is used to treat cancer, years later it can result in new cancers appearing. The risk increases with high dosage and greater time since treatment. The secondary cancer can be quite different from the original and could include lymphomas, sarcomas and leukemias. Secondary cancer is very rare, and your radiation oncologist will talk to you about this risk, particularly if you are a young patient with head and neck cancer.

Chemotherapy, Biologics, and Other Medications

Chemotherapy is the use of medications to destroy cancer cells.

Chemotherapy works by targeting cells that are dividing and growing quickly; cancer cells fit into that category. However, some normal cells are also constantly dividing, including cells in the bone marrow, cells that line the mouth, throat and digestive tract, and cells responsible for hair growth. The death of normal cells is responsible for many of the side effects of chemotherapy.

The role of chemotherapy for head and neck cancer has changed quite a bit as new medications are discovered, and as clinical trials are conducted comparing different types of treatment plans. In the past, chemotherapy for head and neck cancers was really for palliation (relief) of symptoms in cancers that recurred after other treatment methods failed and/or to slow the progression of cancer; it was not used with the intent to cure the cancer.

Currently, chemotherapy is used in several different ways. For advanced stage cancers (stages III and IV), chemotherapy can be combined with another treatment approach with the goal of cure. However, it still plays an important role in palliation and treatment of head and neck cancer that has spread outside the head and neck.

Types of chemotherapy

There are several different chemotherapy agents. Cytotoxic medications are those that kill cells. These medications kill cells as they are dividing. Since cancer cells are dividing more quickly than other cells in the body, the chemotherapy can target cancer cells. However, many other cells in the body are constantly dividing (though not necessarily as quickly as cancer cells), so the side effects of chemotherapy are related to damage to normal cells. An example of this is hair loss (also called alopecia); these cells are constantly dividing as hair continues to grow, so the cytotoxic chemotherapy can kill hair cells along with the cancer cells.

There are many different types of chemotherapy medications. They differ in how they kill the cancer cells. The choice of medication(s) is based on the trials that have shown which ones are effective. In some cases, different types of chemotherapy drugs might be used together. While this might worsen side effects, it might be better at treating types of cancer. Your doctor will discuss the details of your specific case with you.

Cisplatin is the most common type of cytotoxic chemotherapy drug used in head and neck cancer. It has been around for some time, and several studies have shown the benefits it can provide. Other chemotherapy agents used to treat head and neck cancer include:

• Carboplatin
• 5-fluorouracil
• Hydroxyurea
• Paclitaxel and docetaxel
• Epirubicin

Other chemotherapies less commonly used in head and neck cancer include:

• Gemcitabine, vinorelbine and irinotecan
• Methotrexate and edatrexate
• Ifosfamide

There are also other types of medications that can be used in the treatment of head and neck cancer. These are not grouped together with chemotherapy because they are more targeted drugs and are proteins as opposed to chemicals that take aim at other proteins found on cancer cells.

One of the newer such drugs is called cetuximab. This protein targets a specific receptor molecule that is found on some head and neck cancer cells. A number of studies have shown that using this drug in selected advanced cancers might improve local control and survival. Currently, cetuximab can be combined with either chemotherapy for recurrent and/or metastatic squamous cell carcinoma or combined with radiation in the initial treatment of advanced squamous cell cancer. Other targeted therapies include drugs such as vandetanib, trametinib and bevacizumab.

Synthetic thyroid hormone is an example of another type of protein-based medication that is not a chemotherapy drug, strictly speaking, but it is used to decrease the chance of recurrence of some thyroid cancers. By taking a certain dosage of thyroid hormone by mouth every day, the brain can decrease the production of another protein in the blood called thyroid-stimulating hormone (TSH). By decreasing TSH levels in the blood, the chance of thyroid cancer returning might be decreased in certain cases. Like any medication, a doctor will need to help balance the risks of using high doses of this medication with the benefits.

You can see some general guidelines for choosing a chemotherapy medication below.

Administration of chemotherapy

The administration of chemotherapy is determined by a medical oncologist. The treatment plan will be made along with the rest of your cancer team, including a radiation oncologist and head and neck surgeon.

In determining your treatment plan, your medical oncologist and your cancer team will decide at what point in your treatment chemotherapy will be administered. There are a few terms of which you should be aware:

• Induction / neoadjuvant chemotherapy: In this plan, the chemotherapy is used before another form of treatment such as surgery or radiation. The idea is to shrink the tumour and/or see the response of the tumour to the chemotherapy and then complete the treatment.
• Adjuvant chemotherapy (with or without radiation):In this plan, the chemotherapy will be used soon after the initial treatment plan, such as surgery. In some cases of advanced cancer, chemotherapy and radiation may be given together (concurrently) after the surgery. Sometimes the decision to give chemotherapy in addition to radiation (following surgery) is only determined AFTER the pathology results from the surgery are available.
• Definitive chemotherapy (and radiation): In this approach, chemotherapy is given along with radiation with the hope of eliminating the cancer without surgery. “Definitive chemotherapy” refers to the use of chemotherapy alone to try to cure the cancer, but this is not used in head and neck cancer (except perhaps in lymphoma). When this is used, if there is evidence that cancer is not completely gone (persistent disease), or if it comes back in the initiation area (local recurrence), you will probably require surgery as the next step.
• Surgery after a failure of chemotherapy and/or radiation is called salvage surgery. As compared with surgery up front, salvage surgery is more difficult, may be more radical, and may involve more complications than if surgery were used initially. However, definitive chemotherapy/radiation can be just as effective and offers the possibility of avoiding surgery and keeping certain organs (organ preservation).
• Palliative chemotherapy:In this approach, chemotherapy is given either alone or with some other form of treatment, not to cure the cancer, but to perhaps slow its growth, prevent major complications and try to improve quality of life.

Once the treatment plan is decided, you will probably have some questions about the logistics. In brief, chemotherapy is usually delivered in multiple doses; this is because each administration of chemotherapy kills a certain percentage (or fraction) of cancer cells. By giving more doses of chemotherapy, more of the cancer cells are destroyed. But giving too much chemotherapy increases the side effects, so the right balance needs to be reached.

There are several ways to administer chemotherapy:

• Intravenous:Most chemotherapy is administered directly into the veins (see below for techniques of intravenous administration).
• Intra-muscular:In this technique, the chemotherapy is administered as a shot into one of the muscles in the body.
• By mouth:Some chemotherapy drugs can be taken at home in a pill form.
• Intra-arterial:Though not used often in head and neck cancer outside of clinical trials, chemotherapy for certain cancers can be delivered directly into an artery that feeds the cancer and delivers the chemotherapy directly to the targeted cells.
• Transcutaneous:For some skin cancers, a patient might receive a cream to apply as a form of treatment.

When given intravenously, there are several options for getting the medications into the veins. Most commonly, when you arrive for your chemotherapy infusion appointment, a nurse will place an intravenous line (usually into your hand or arm) and this will be removed after the infusion is complete. However, longer-lasting lines might be suggested depending on your chemotherapy plan.

What other changes in routine should I expect?

Depending on the location of your cancer, additional treatment and the side affects you experience, your doctors might recommend you receive a feeding tube. This is to help you maintain your nutrition as you go through treatment.

Also, while you are receiving chemotherapy, you might be at an increased risk of getting an infection. You should make sure to continually wash your hands and have people you live with do the same.

Even if the treatment is administered to you as an outpatient, you might require temporary admission into a hospital to help you manage some of the side effects. This is particularly true if you are receiving radiation at the same time.

Side effects

You will almost certainly experience side effects from chemotherapy. While chemotherapy targets cancer cells, these medications can also cause damage to normal cells. Finding the right balance can be difficult, and your medical oncologist will speak to you about those issues.

Also, while some side effects are common to most chemotherapies, other side effects are specific to certain drugs. The most common side effects that you may experience include:

• Mucositis:This is inflammation and ulceration of the lining of your mouth and throat. Mucositis can cause severe pain and difficulty with eating and drinking. This can happen with any chemotherapy medication, but it is more common with 5-FU. Also, when combined with radiation for head and neck cancer, this can be especially problematic.
• Hearing loss:This is a special risk factor for platinum-based chemotherapy drugs, such as the commonly used cisplatin. Associated symptoms might include ringing in the ears (tinnitus). You should consider getting a hearing test before starting treatment with a platinum-based chemotherapy, followed by repeated hearing tests throughout your treatment.
• Kidney problems:This is a problem with all chemotherapy drugs, including cisplatin. Carboplatin is less toxic to the kidneys than cisplatin. Your doctor will monitor your kidney function throughout your treatment course.
• Nausea and vomiting:This are another common problem with all drugs, cisplatin more than carboplatin. You might require additional medications to help decrease nausea.
• Rash:Rashes can occur with a variety of drugs, including 5-FU. However, cetuximab therapy is particularly known for this problem. With cetuximab, the rash looks like acne. Fortunately, the rash goes away after stopping treatment, and there is no significant pain or problems related to rashes in most cases of cetuximab.
• Neuropathy:This is a nerve problem that usually starts as a feeling of numbness or tingling in the fingers or toes. It can also feel like an electric bolt that shoots down an arm or a leg. For some people, cancer-induced peripheral neuropathy (CIPN) is just a little bothersome and they learn to deal with it. In others, however, it can be so severe that it can lead to stoppages or reduced dosages of chemotherapy. This can be a long-term problem that can be managed with certain medications, physical therapy or even acupuncture and massage.

Other side effects might include:

• Diarrhea / constipation
• Low blood counts
• Tiredness
• Loss of appetite
• Bleeding problems
• Sexual and fertility changes
• Infection
• Urination changes
• Swelling
• Memory changes

Choosing the right treatment plan

The choice of chemotherapy should be individualised based on patient characteristics. This means that the exact drugs given and how they are given might vary depending on the goals of the treatment as well as how sick/healthy you might be. Also, there are always clinical trials going on to try new combinations and sequences of treatments to improve the chance of cure, prolong life, prevent distant metastases and/or improve quality of life.

• If chemotherapy is a primary (initial) treatment option for your type of cancer, then the standard first line treatment is cisplatin along with radiation. This is called concurrent chemoradiation. The use of chemotherapy followed by radiation (sequential chemoradiation) is currently under study.
• If induction chemotherapy is recommended, then the next treatment steps after chemotherapy could be radiation alone, cetuximab with radiation or carboplatin with radiation. It is not recommended to give high-dose cisplatin along with radiation after giving induction cisplatin-based therapy.

These guidelines are put together by a group of experts in the field. Remember, these guidelines only fit if your cancer doctors have agreed that chemotherapy should be part of your treatment plan (which is not always the case for head and neck cancers):

Getting Prepared

If a health care professional has recently told you that you have head and neck cancer, but you do not yet know all the details of your diagnosis, there are initial steps that you can take to prepare.

Some challenges you are likely to experience during the head and neck disease course may include a change in ability to speak, swallow and obtain adequate nutrition. In this section, we will review recommended initial steps that you can take prior to receiving treatment.

Your ability to speak and swallow should be assessed pre-treatment (baseline).

Evaluation by a speech pathologist: You may experience a change in your voice or ability to speak during treatment or even after the completion of treatment. Therefore, many head and neck cancer patients are advised to see speech pathologists. For example, 34 to 70 percent of patients who received radiation therapy developed a speech impairment post-treatment.

A speech pathologist is often an integral person in your cancer care team and may provide essential recommendations at various times during your cancer journey.

Evaluation by a speech pathologist may be done prior to treatment, especially to obtain baseline measurements of your ability to speak and swallow as well as to assess the likelihood of your experiencing side-effects in your voice or ability to speak as a result of your treatment. The speech pathologist can also provide you with recommendations to preserve your ability to swallow, which may include changes in your oral hygiene routine. In addition, you can learn swallowing exercises and practice them during therapy to maintain your ability to swallow.

It is likely that you will work with your speech pathologist frequently during your cancer journey; speech pathologists also often work with patients during rehabilitation.

Evaluation by a registered dietitian/nutritionist: Patients with head and neck cancer are often undernourished before initiating treatment, which may be due to complications associated with the tumour. Many patients with head and neck cancer may experience weight loss during the disease.

Therefore, a registered dietitian/nutritionist may assess your nutritional needs at your baseline and periodically throughout the course of your cancer journey. The registered nutritionist can provide you with strategies for treatment-associated side effects that may disrupt eating through the course of treatment. If your nutritionist determines that you are currently not getting adequate nutrition at any time during your disease, you may temporarily receive nourishment intravenously or through a feeding tube.

Evaluation by a Dentist: Radiation therapy has been associated with an increase in cavities and bone loss.

Prior to treatment, you should have a dental evaluation. If you are likely to receive radiation therapy, then prophylactic fluoride treatment should be done to protect your teeth during treatment and for the rest of your life, which can decrease the likelihood of developing cavities.

Find a support group: You may consider identifying a support group for you and/or your family members. Patients diagnosed with head and neck cancer have been found to suffer from depression; approximately one in five patients had depression after completing radiation therapy for head and neck cancer and one in three patients had depression many years after the completion of treatment. Many patients also benefit from learning how to navigate their cancer journey or other skills, such as how to communicate with health care professionals, from people who have done the same before. The only dedicated Head & Neck Cancer Support Group in Western Australia is the Perth Head & Neck Cancer Support Group based out of Fiona Stanley Hospital in Murdoch, Perth

Learning About Your Diagnosis

If you have recently been diagnosed with head and neck cancer, then your health care professional probably obtained the results from your biopsy. Other pieces of information that your doctor also collected (or will soon gather) include the grade, histology subtype and stage. Let’s first briefly review what these tests and evaluations are and what they will tell you.

Biopsy, grade, histological subtype and stage

• Biopsy:A biopsy is the removal of a small piece of tissue to examine under a microscope to see if it is cancerous. At some point, you will need a biopsy of any lesion your doctor suspects may be cancer. The biopsy report is extremely important for determining your diagnosis and treatment plan.
• Grade: The pathologist will also grade the cells or categorise them by how well defined the cells appear (in other words, how closely they resemble normal cells). The pathologist will assign a grade to the cells, which typically will range from 1 to 4. If the cells appear normal, then they are categorised as well differentiated and are assigned a score of 1. Conversely, if the cells appear very abnormal, then they are assigned a score of 4.
• Histological subtype:The pathologist will also classify the cell types; over 90 percent of patients diagnosed with head and neck cancer have squamous cell carcinoma.
• Stage:Cancer is staged by the size of the tumour and how extensive it is within the body. The staging system used is based on tumour size (T) and how extensive the tumour is within the body; for example, whether the malignancy has entered regional lymph nodes (N), or whether the cancer has moved (metastasized) to distant sites within the body (M), such as the lungs.
• Evaluating how extensive the tumour is within the body involves the use of imaging devices, such as computed tomography (CT), magnetic resonance imaging (MRI) or positron emission tomography (PET).

The types of stages are typically from an early stage (I), with the smallest tumour size that has not yet extended to lymph nodes or distant sites in the body, to stage (IV), which is either the largest tumour size or it has moved to distant sites in the body. Specifics are defined in each tumour subsite section of the Head and Neck Cancer Guide.

Why is the name of the specific type of head and neck cancer, along with the assigned grade and stage, important to you? Let’s look at what this information means in the next two sections.

What your diagnosis means: prognosis

Your health care provider should have provided you with the name of the type of cancer and its grade and stage. This information can be used to provide a prognosis or an estimate of the probable outcome of your cancer, which includes the likelihood of survival.

People who are diagnosed with an early stage of head and neck cancer will have a better prognosis than patients with late stage disease. For example, after five years, most patients (82.4 percent) diagnosed with stage I or II head and neck cancer will be alive, but those in later stages at the time of diagnosis have a reduced (71.4 percent) chance of achieving a cancer-free state.

The grade is also related to prognosis; if a patient has cells that appear very abnormal (grade 4), he or she usually has a worse prognosis than a patient with very normal-appearing cells (grade 1).

What your diagnosis means: likely treatment course

Numerous clinical studies, which included patients with head and neck cancer, have been conducted. A panel of specialists has evaluated the findings from these clinical studies and recommended which treatments are likely to be most beneficial for subsets of patients.

Your health care professional will use your specific diagnosis and stage to provide a recommendation for the best treatment course for your cancer. In some cases, either the grade and/or the histological subtype (e.g., squamous cell or another type) will also be used to make a treatment recommendation.

It should be cautioned that although the diagnosis and stage are used to provide a recommendation for a treatment course, it does not mean that this is your only treatment option. Often, there are several possible treatment options. In addition, you have the right to evaluate the available information and decide whether it is the best treatment course for you. For example, sometimes patients refuse to have surgery and are instead treated with chemotherapy, radiation therapy or both.

Re-evaluation: should you get a second opinion?

Patients should be treated by a multidisciplinary team; the team members should have an expertise in head and neck cancer. Moreover, a study demonstrated that specialists versus non-specialists performed more accurate diagnoses. An accurate diagnosis is essential to select the best treatment option.

Head and neck cancers represent about 3.4 percent of all cancers in Australia, so it is uncommon. A hospital in a rural area, for example, may not have health care professionals with a high volume of head and neck cancer patients, which could potentially result in an inaccurate diagnosis and could in turn result in the selection of a less optimal treatment management plan.

You may want to consider identifying medical facilities that have specialists with an expertise in head and neck cancer to receive a second opinion.

Understanding Your Treatment Plan

Your health care team will likely recommend a treatment course based on 1) your specific type of head and neck cancer; 2) disease stage; and 3) clinical guidelines that are based on the best evidence to date from research. These are not the only factors used to select the best treatment options, so you should ask for as much information as possible to understand the benefits, risks and side effects associated with your treatment plan.

There are predominantly three types of therapy for head and neck cancer, which include the following: surgery, radiation therapy or chemotherapy, or a combination of these therapies.

Treatment type: Surgery

If surgery is used for early stage head and neck cancer, it may be the only treatment modality needed and can be curative. Surgery can also be combined with other therapies; for example, surgery can be performed first, followed by radiation therapy.

The treatment goals associated with surgery include removing the entire tumour and keeping the nearby anatomic structures intact. A complication associated with extensive head and neck surgery is that it may be necessary to remove bones, such as part of the jaw, or even entire structures, such as the external ear. Your doctor is required to clearly state what will happen during your surgery, so you will know what to expect. A concern that many patients have is whether a surgical procedure will impact their appearance or ability to eat or speak. Your health care team will use many strategies to retain both form and function, but it may require rehabilitation several months after treatment.

Treatment type: Radiation Therapy

If radiation therapy is used for early stage head and neck cancer, it may be the only treatment needed and can often be curative. Radiation therapy may also be used sequentially (e.g., after surgery) or concurrently with chemotherapy (chemoradiation).

Radiation therapy uses high-energy rays that disrupt the DNA of targeted cells and induce cell death, which then decreases the size of the tumour. To optimally deliver the high-energy rays to the site of the tumour yet protect surrounding tissues, radiation planning is performed before the radiation procedure; basically, imaging of the tumour site is mapped while the patient is positioned in the same manner as the upcoming treatment. Then, during radiation therapy treatment, the patient is carefully positioned in the same place and the beams deliver radiation therapy to the tumour.

Radiation therapy can have the following side effects:

• Inflammation of the membranes lining the mouth (mucositis); approximately 50 percent of patients who are administered radiation therapy develop this symptom at the time of treatment, and it can cause pain and interfere with eating and/or swallowing
• Alteration in taste
• Decreased salivation (xerostomia)
• Changes in voice (e.g., hoarse voice)
• Difficulty opening the mouth (trismus)
• Cavities, which are likely due to decreased salivation
• Fatigue, experienced by 70 to 80 percent of patients
• Airway obstructions

Treatment type: chemoradiation therapy

Chemoradiation therapy may need to be used following surgery. Alternatively, it may be used as the initial treatment for patients with more advanced head and neck cancer.

Chemoradiation therapy can have the following side effects:

• Inflammation of the membranes lining the mouth, or mucositis; this symptom interferes with eating or swallowing
• Decreased salivation
• Fatigue, reported by 70 to 80 percent of patients
• Nausea and/or vomiting

Staying on Top of Your Treatment Plan

Before you receive your treatment plan, you may want to discuss with your health care professionals what you can do to manage side effects. In addition, you can ask them if there are specific side effects to discuss with them either immediately or later point.

While receiving your medications, you may want to keep worksheets in a binder that include the following:

• A list of typical treatment-associated side effects (e.g., vomiting, fatigue)
• A way to rate the intensity of each side effect from none, mild, moderate, to severe
• Any directions that you were given to manage the side effect, which may include taking a medication or notifying a health care professional

For example, if you are receiving chemoradiation therapy, you may want to create a worksheet as follows:

Choosing a Cancer Care Team

 Take control of YOUR treatment right from the beginning, afterall you are the one that has to life with the consequences and not the medical professionals.  Make the medical professionals accountable for everything that they do.

Patients should be managed not by an individual physician, but by an entire team comprised of specialists with an expertise in head and neck cancer.

 You should consider the characteristics of physicians and/or health care facilities when selecting members of your cancer care team and/or treatment facility.

Cancer Care Team Roles

Head and neck cancer are likely to be managed by a team of health care professionals. You may see some of these team players only once or for a short duration, whereas others you may see during most of the treatment course. There are some members of the team, such as a pathologist or a head and neck radiologist, that you may never meet at all, but expertise in evaluating your pathologic slides or your imaging studies may be vitally important.

Who should be on this team? Whether or not you have some of these members on your team depends on your individual treatment plan. You may only require surgery and not need radiation, so you may only work with a surgeon and not a radiation oncologist. Your cancer care team may include the following team members:

• Registered dietitian/nutritionist:Ideally, a registered dietitian should assess the patient at baseline and periodically throughout his or her disease course. The dietitian will provide strategies to deal with treatment side effects. In addition, the dietitian may need to be consulted if a patient loses a significant amount of his or her ideal body weight.
• Speech pathologist:A baseline assessment of swallowing in addition to the ability to speak should be evaluated. The speech pathologist will recommend strategies and exercises to be performed during treatment and post-treatment to maintain or improve swallowing and speaking function. Many patients need rehabilitation with a speech pathologist post-treatment. Between 34 to 70 percent of head and neck patients will develop speech impairment during their treatment.
• Cytopathologist:A health care professional who uses a microscope to evaluate cells.
• Pathologist:A health care professional who uses a microscope to evaluate tissue; a pathologist will play a role in diagnosing the disease.
• Radiologist:A health care professional who specialises in evaluating images and will evaluate extensiveness of the disease; this health care professional will also play a role in diagnosing the disease.
• Radiation oncologist:A physician who uses radiation therapy to treat cancer.
• Surgeon:A physician who will physically cut the tumour out of the patient and/or reconstruct anatomic structures compromised from the removal of the tumour.
• Prosthodontist/dentist:Radiation can cause cavities, so you may wish to consult a dentist before treatment. You might need to consult a prosthodontist since teeth, parts of the jaw or other structures such as the nose or the ear may need to be removed to treat the cancer, and a prosthodontist specialises in creating a prosthesis to help you restore functions that may have been affected by your surgery.
• Medical oncologist:A physician who specialises in several aspects of cancer care, such as diagnosis and the management of cancer (e.g., chemotherapy). The medical oncologist is likely to be a specialist who you will interact with at several points during your cancer journey.
• Social worker:Works with the patient and the patient’s caregivers to address their psychological wellbeing.

Other health care professionals may work with you and/or the cancer care team, depending on your needs. For example, a psychiatrist may be part of the team. Alternatively, an addiction specialist may be a member of your team.

Evaluating Your Cancer Care Team

It is recommended that patients receive treatment from multidisciplinary teams; ideally, the team members will specialise and have expertise in head and neck cancer. Head and neck cancer are a relatively rare type of cancer; head and neck cancer comprise only 3.4 percent of all cancer types in the Australia.

Several studies have evaluated the characteristics of either physicians and/or health care facilities to affect outcomes. These studies have limitations: the studies were done using patients with different types of cancer and all studies did not evaluate the same characteristics.

Characteristics associated with physicians that contributed to improved outcomes were as follows:

• Performing a high volume of surgeries versus a low volume
• Specialists with expertise in the type of cancer versus generalists

Characteristics associated with hospitals that contributed to improved outcomes were as follows:

• Hospitals that performed a high volume of surgeries had improved patient higher survival rates compared to hospitals that performed a low volume of surgeries.
• Hospitals that provided other specialised services had an improved reduction of treatment side effects.

In summary, you may want to reflect on whether the following characteristics in a doctor and/or hospital are important to you. If so, do the research to see if the cancer treatment team and facility meets your criteria. Which of the following are important to you?

• Having a multidisciplinary team
• Having clinicians and/or a hospital with a speciality in head and neck cancer
• Health care professionals and/or hospitals that perform high numbers of medical procedures
• Receiving treatment at a location near your home, friends and family

Utilise the pdf resource document located in the Resources tab to assist you with your medical professionals.

There are steps that you can take to manage certain side effects before treatment, some of which may minimise long-term complications that can be caused by treatment-associated side effects. You should first discuss the side effects with your physician, along with their recommendations for management of side effects.

The following precautions and plans may apply to you, depending on the type of treatments that you are likely to receive as part of your treatment plan:

• Dental evaluation:See a dentist for an evaluation and pre-treatment dental work prior to starting radiation
• Prophylactic fluoride teeth treatment:If you are likely to receive radiation therapy, you are at higher risk for developing cavities; this side effect has been attributed to decreased salivation. Prophylactic fluoride treatment is recommended to protect your teeth during and after treatment and decrease the long-term risk of developing cavities.
• Consult a registered dietitian/nutritionist and speech pathologist:Many of the treatment-associated side effects can impair the desire to eat, such as severe mucositis or nausea and vomiting. In addition, some of the treatments can cause function loss and impair swallowing. Therefore, prior to the treatment, the nutritionist should provide recommendations specific to the treatment, such as food to avoid, in addition to strategies to implement in case there are problems obtaining adequate nutrition. Strategies as to how to eat if eating becomes difficult can also be provided. You can also learn swallowing exercises to do daily during and after your treatment, which should help you maintain the ability to swallow.
• Begin an exercise program:Most patients will experience cancer-related fatigue during and after their treatment, and it may be so extreme that they will not be able to do their normal activities. Because exercise has been found to decrease cancer-related fatigue, patients may want to consider implementing an exercise program prior to the initiation of therapy, which may help them after treatment.
• Find a support group:Patients report experiencing stress and anxiety. Moreover, one in three patients experiences moderate depression even 10 years after receiving radiation therapy. Participating in patient support groups has been associated with improved quality of life. You may want to consider identifying and participating in a support group.

Working During Cancer Treatment

You may need to take time off from work as you are undergoing therapy for cancer. In a study with 63,949 patients with cancer, the average patient missed 18 days out of the year, with an average of four and a half hours per week, to treat side effects.

In addition, cancer-related fatigue can be so severe that it disrupts the ability to do daily activities, let alone work. A person may be unable to perform his or her job during this time.

The company and employee must meet certain requirements to be allowed to have the unpaid time off. The key is to inform your employer and keep them abreast of what is happening and where you are at with your treatment.

The Disabilities Discrimination Act 1992 section 15: The Commonwealth Disabilities Discrimination Act  will not allow employers to discriminate against employees that have a disability, or a health complication that may limit a person’s ability to perform daily activities. By law, from the time that you are diagnosed with cancer, you meet the criteria to be categorised as disabled and the Disabilities Discrimination Act  should provide protection for you. Interpretation of the Disabilities Discrimination Act  is challenging, however. The challenge is determining whether the accommodations will cause hardship to the employer.

Your employer is not allowed to fire you because of your cancer diagnosis or health problems from cancer that disrupt your ability to perform tasks. In addition, your employer could include providing you with a flexible schedule so you can obtain treatment or permitting you to work from home.

Whether you will be provided with accommodations or your job will be protected depends on the nature of your job and the business. If your job can only be performed by you and a temporary employee cannot perform the tasks that you did, or if it would be very costly to the business, then it will be considered a hardship for the business and they will not be required to make accommodations or even keep your job.

Depending on your employer they may permit you to work from home and/or have the flexibility to attend other periodic appointments necessary for medical treatment.

Life During Treatment

During your treatment, you will likely experience treatment-related side effects.

The following side effects can worsen during treatment and can negatively impact your quality of life:

• Fatigue
• Changes in your speech (e.g., hoarseness, loss of voice)
• Pain
• Changes in hearing; over 85 percent of patients with head and neck cancer who had chemoradiation therapy experienced hearing loss
• Decreased salivation, which often increases dental caries and other dental problems
• Problems swallowing (e.g., delayed swallowing or other complications)
• Decreased ability to eat

Changes in Eating

Several factors can cause changes to your eating during cancer treatment. Some of these include the following:

• Problems swallowing, which can be caused by the location of the tumour
• Nausea and/or vomiting, which are often side effects associated with chemoradiation therapy
• Changes in the perception of taste or smell
• Changes in salivation, such as decreased salivation or changes in the saliva quality
• Diarrhea
• Decreased appetite
• Inflammation of the membranes in the mouth (mucositis); severe mucositis sometimes causes pain, which in turn negatively impacts the desire to eat

If you experience any of these problems and your nutritional needs are not being met, there are various solutions that your registered nutritionist and health care professionals may suggest, which are as follows:

• If you experience a loss of appetite, eat smaller meals more often.
• Eat or drink foods that are rich in the nutrients that you need.
• Use nutritional supplements, such as protein powders or nutrition “shakes,” to boost your caloric intake.
• There may be a need for temporary treatment to help you meet your nutritional needs, which include the use of a feeding tube or an IV.
• Manage treatment-associated side effects. For example, if you experience decreased salivation as a side effect of radiation therapy, there are medications that can stimulate salivary production (e.g., pilocarpine).

If you experience extreme weight loss, such as the loss of 10 percent or more of body weight, or if you have problems with swallowing as the result of treatment, your nutritionist may need to monitor you more closely.

Anxiety, Fear and Depression

Virtually all cancer patients, along with their caregivers, experience sadness, grief and fear. This is normal. However, up to 75 percent of cancer patients experience a high level of sustained psychological distress that can negatively affect treatment and recovery.

About 25 percent of cancer patients suffer from severe symptoms that can be diagnosed as major depression or anxiety disorders. These disorders usually require treatment. It is important to understand the difference between normal sadness and grief and actual psychological disorders that can affect your ability to deal with your cancer diagnosis, treatment and recovery.

Coping Strategies

Cancer diagnosis and treatment are physically and emotionally difficult, and it’s fairly common to experience feelings of depression and anxiety. However, psycho-oncologists (psychologists who specialise in the mental health care of cancer patients) recommend keeping a close eye on your emotional state after diagnosis, during treatment and beyond, and getting support and/or treatment if your symptoms become severe or long-term. This is because studies have shown that those who develop positive coping strategies generally have a better quality of life and recovery rate than those who do not.

While your cancer care team’s primary goal is to treat your cancer, an increasing number of oncologists are recognising the importance of emotional support for cancer patients. Coming up with ways to cope with the emotional aspects of head and neck cancer can be very helpful to you and your family.

Positive coping versus negative coping

Coping means finding ways to deal with challenges and intense emotions. How you cope with your cancer diagnosis and treatment can have a profound effect on your quality of life as well as your caregivers’ quality of life. There are negative coping strategies and positive coping strategies.

Negative coping strategies include denial (pretending you do not have cancer or refusing to think or talk about it), withdrawal or avoidance (isolating yourself from others) or a fatalistic attitude (expecting the worst). Negative coping strategies are associated with higher levels of anxiety and depression in head and neck cancer patients.

In contrast, positive coping strategies can help you to have a better quality of life and might even improve the outcome of your treatment. Positive strategies include finding the benefits of your illness, seeking support from others, being informed, talking to others about your cancer, remaining active in daily life, thinking and speaking positively about yourself, being religious/spiritual and maintaining a generally positive outlook throughout your cancer journey. One of the more difficult positive coping strategies to achieve is finding benefits of your illness. Benefits might include discovering a greater sense of purpose in fighting your cancer, helping others in their cancer journeys or strengthening relationships.

Positive coping comes more naturally to some people than to others. If you have visible scars or facial disfigurement as a result of your cancer treatment, it will probably be even more challenging to remain positive. If you find that you tend toward negative coping strategies, you can consciously change to more positive ones. This is not easy, but it can be done with consistent long-term effort. Medication for depression or anxiety combined with counselling or therapy is the most effective way to develop active positive coping skills, followed by maintaining strong family relationships and a large active social network. Twenty-five percent of head and neck cancer patients who receive counselling over 12 months or more can overcome symptoms of anxiety or depression.

Up to 67 percent who receive regular therapy beginning soon after diagnosis no longer have symptoms of depression or anxiety 12 months later. A qualified therapist or counsellor can give you specific coping techniques. They can also provide advice and support to help you maintain your coping skills as your care progresses and your circumstances change.

While positive coping strategies have been shown to improve quality of life for many cancer patients, note that they don’t work for everyone. Some people find that constant positivity does not suit their personalities, or they find that they simply cannot maintain a positive outlook long-term. They may even be annoyed or angered by people constantly telling them that they must stay positive. They find being realistic and having knowledge, even if it makes them less optimistic, to be more comforting for them. If this is the case for you, know that you are not a failure because you are not always optimistic. Just use your best coping strategies, positive or negative, to get you through your cancer journey and ask for help when you feel you need it.

Positive coping strategies

Here are some ideas you can use today to help you cope with your cancer diagnosis, treatment or recovery.

• Understand Your Cancer Diagnosis
  Learning as much as possible about your cancer type and treatment plan can help you feel more in control of the situation.
• Maintain Good Communication with Your Family and Cancer Care Team
  While it’s perfectly understandable to want time to yourself, particularly after a diagnosis, maintaining good two-way communication with your loved ones, doctor(s) and nurses is important.
• Anticipate Possible Physical Changes
  Before beginning cancer treatment, it’s a good idea to plan for possible physical changes, as this can help you cope later. Understanding your treatment plan and speaking to your doctor can give you an idea about what cancer treatment side affects you may experience, such as severe dry mouth. A wide variety of solutions are available to help you through this process.
• Maintain a Healthy Lifestyle
  Head and neck cancer treatment can create changes to your diet, so you should meet with a dietician before and during treatment to ensure you maintain adequate nutrition. If possible, practice regular exercise during treatment. Exercise has been shown to provide benefits in cancer patients, such as reducing fatigue and preventing muscle loss. Exercise is also effective at reducing stress. You might even try dance or movement therapy, which can help to reconnect you to your body, enhance your ability to express yourself, build muscle strength, and reduce feelings of isolation, fear and depression.
• Let Family and Friends Help You
  Letting people close to you run errands, provide transportation, help you with household chores and prepare meals can be a huge benefit and reduce stress. Don’t feel guilty about accepting their help, as it can also help them feel more productive in a difficult situation.
• Learn and Regularly Practice Relaxation Techniques
  A variety of relaxation techniques, such as deep breathing exercises, prayer, meditation and yoga, can help you feel more relaxed and relieve stress.
• Try to Maintain Your Normal Lifestyle
  Try to maintain your normal lifestyle as much as you are able. This can help you cope with cancer. Cancer treatment side effects can be managed better than ever before, and many cancer patients are able to work full time or part time while undergoing treatment. Even simple activities, such as walks around the neighbourhood with your spouse, may help you feel better.
• Speak with Other Cancer Patients
  Because people who haven’t experienced a cancer diagnosis may have trouble truly understanding your feelings, it may be helpful to join a cancer support group. Your hospital may have groups available. Online cancer support groups are also available.
• Find Tools to Help You Communicate
  If you lose your ability to speak, hear or see as a result of your cancer treatment, there are tools that can help you to cope with these difficult changes. Many people who lose their ability to speak find that it is too tiring and frustrating to try to communicate their needs to others at first, so they don’t. Consequently, they end up going through treatment without help and support when they need it most. Look for ways to communicate more easily and delegate tasks to others. For example, tablets and pads can help you to communicate without speaking much more easily than writing on paper or gesturing. Interactive calendar applications can help you communicate days and times for visits, meal deliveries, chores and more and allow friends, family and caregivers to sign up for times and tasks that suit their schedules without having to go back and forth with you. You can also have computers, pads or smart phones “read” text you type out loud to help you “speak” to others or hear text read to you if your sight is impaired. There are many tools available that can reduce your stress level and help you feel more in control. This will in turn help you to cope with your emotions and keep a more positive outlook in general.

When to Seek Help

 Cancer treatment is primarily about survival, but it is also important to maintain the highest quality of life possible during your experience. Psychological disorders, such as major depression and anxiety, can negatively affect your quality of life. Thirty-three percent of cancer patients experience serious psychological distress.

However, less than 10 percent seek professional psychological care. This is unfortunate since regular therapy or counselling can significantly reduce or eliminate the symptoms of depression and anxiety and improve overall quality of life.

Many cancer centres have psycho-oncology specialists on staff. These specialists might include nurses, social workers, psychologists, psychiatrists and chaplains who specialise in the mental well-being of cancer patients and their families and caregivers. You may wish to include such a specialist on your care team to help you learn positive coping strategies and maintain a hopeful outlook.

Normal responses

If you are trying to decide if you need help handling your emotions, it may be helpful to know what are considered “normal” reactions for most cancer patients.

When people first realise, they are being tested for possible cancer, they usually experience fear and anxiety as they wait for results. When they receive a cancer diagnosis, their most common reaction is disbelief and denial. This stage usually lasts just a few days. The new cancer patient then slowly begins to accept the diagnosis and will likely experience emotional turmoil that includes anxiety and depression, poor concentration, loss of appetite, trouble sleeping and an inability to complete tasks.

Thoughts of death may begin to dominate the person’s thoughts. This stage usually lasts one to two weeks. Once treatment begins, many patients become more hopeful because they have a plan and they are taking positive steps to fight their cancer.

Over the next few weeks or months, most patients will continue to adjust to all the emotions and changes that come with cancer treatment, recovery and remission. This period may be punctuated by new emotional crises if there are facial disfigurements, treatment failures or cancer recurrence.

All these reactions are “normal” in the sense that they are the most common or typical emotions experienced by head and neck cancer patients. It doesn’t mean that if your reactions are different that there is something wrong with you. There are a wide variety of emotional reactions that may be normal for you and are not a reason to be overly concerned or seek professional help. Any time that you feel you need help, though, you should not hesitate to seek it. What is tolerable for one person, even if it is considered normal, may not be tolerable for you. There is no shame in seeking help when you need it.

Signs you may need to seek help

While periods of sadness, grief, fear and anxiety are common throughout the cancer experience, if you’re finding yourself unable to adjust to your diagnosis after weeks or months, you may be suffering from a serious psychological disorder that requires treatment.

Some signs that you may need help include:

• Having a history of depression or anxiety before your cancer diagnosis
• Having five or more symptoms of depression for two weeks or more
• Experiencing sustainedanxiety that prevents you from functioning in your daily life and/or getting the cancer treatments you need
• Denying your diagnosis to the point that you refuse to get treatment
• Feeling unable to concentrate or function in daily life
• Feeling “numb” or paralysed, unable to make decisions or act
• Losing your motivation to go anywhere, do anything or interact with others
• Experiencing multiple panic attacks
• Feeling hopeless, helpless or fixated on thoughts of death and dying
• Having suicidal thoughts or impulses
• Experiencing any other type of psychological or physical distress not associated with your cancer treatment over a sustained period of time (e.g., shaking, headaches, digestive issues, difficulty thinking, etc.)

If you have any emotional or psychological issue that you want to overcome but can’t, and it is affecting your quality of life or cancer treatment, tell your cancer care team. Ask for a referral to a mental health professional who can help you feel more in control and develop coping strategies that will support you during your cancer journey. Anxiety and depression can be severe and disabling by themselves. In combination with a cancer diagnosis, they can stand in the way of your treatment, survival and recovery. With the help of a professional, you have a two in three chance of eliminating the symptoms of a psychological disorder entirely during a few months. Do not hesitate to seek help and give yourself every advantage you can in your fight against cancer.

Perth Head & Neck Cancer Support Group

In Western Australia Head &Neck Cancer is not that well promoted and this is evident in the lack of dedicated support for Head & Neck Cancer patients. Compare this to available support groups for other cancers and this further highlight’s that Head & Neck Cancer is not promoted or supported as much as other cancers.

Perth Head & Neck Cancer Support Group (currently in Murdoch Perth) strives to change that. This group is set up and facilitated by Head & Neck Cancer patients for Head & Neck Cancer patients and their carer’s. The group is supported by the Western Australian Head & Neck Cancer Support Foundation to ensure that the needs of the support group are met.

The objectives of Perth Head & Neck Cancer Support Group are:

Empower cancer survivors to live well;

Support people (patients and carers) affected by cancer; and

Integrate palliative care services.

Life After Treatment

 The post-treatment time period is from the completion of treatment through two years after the completion period. Your post-treatment care will involve periodic follow-up visits with your doctor to make sure your cancer does not return. You may also need ongoing rehabilitation for speaking, swallowing and nutritional needs.

 Post-Treatment Care

 Deficits in functioning (e.g., swallowing) for patients who received radiation therapy were evaluated at baseline and post-treatment. Most patients exhibited swallowing impairments at baseline, such as a decreased ability to retract the tongue, delayed swallowing or decreased tongue strength. During the first months to one-year post-treatment, there was little change in the swallowing impairments for most patients.

 Rehabilitation

 Depending on the treatment and treatment-related side effects, the ability to speak or eat may be compromised post-treatment. Working with a speech pathologist may improve a patient’s ability to speak.

 Swallowing function can be impaired even several years after the completion of surgery, radiation therapy or chemoradiation therapy. Rehabilitation can include any of the following type of exercises: swallowing manoeuvres, such as effortful swallow or Mendelsohn manoeuvre (prolonged swallow); range of motion exercises (e.g., jaw, tongue); tongue strengthening exercises; and tactile stimulation.

 Depending on the changes that occurred to your anatomy post-treatment (e.g., decrease in size of muscles, surgical removal of structures), you may require voice rehabilitation. Between 34 to 70 percent of head and neck cancer survivors will develop a speech impairment. A wide variety of tools can be used as a part of voice rehabilitation. These range from the use of prosthetic devices to help with vocalisation to surgical reconstruction.

 Follow-Up Care

 Some long-term side effects from the initial treatment plan can develop later. For these reasons, follow-up evaluations will need to occur.

 For example, if radiation therapy was administered to the neck region, then there is an increased likelihood of developing impaired functioning. For example, 25 percent of patients who were administered surgery and radiation therapy combinations developed hypothyroidism post-treatment.

 For this reason, every six to 12 months, you will need to undergo tests to evaluate the thyroid gland.

You can work with your health care professionals to obtain advice as to how frequently you should have follow-up evaluations to confirm that you are not experiencing long term-side effects.

 You should take steps to decrease the likelihood of developing cancer again. Smoking and excessive alcohol consumption are known risk factors for various types of head and neck cancer. If you need help with the cessation of these behaviours, you may want to seek counselling.

 Finally, if you have not yet returned to work, you can begin to take steps to resume your job as you feel able to do so.

The Path to Remission

If a patient experiences complete remission, the primary symptoms associated with head and neck cancer should disappear or at least be markedly improved; there should be no evidence of the primary tumour on physical exam and CT or MRI scans should also have no evidence of disease at the site of the tumour or in other areas of the body.

Although you may now be in remission, it is critical that you continue to be vigilant to find out if the cancer returns or if a secondary cancer grows. There is a higher probability of cancer returning (recurrence) or a new cancer occurring in the first few years.

Although this may be stressful and cause anxiety for you, it is best to identify cancer at an early stage. For example, among patients who are diagnosed with stage I head and neck cancer, 90 percent are likely to be cured, whereas among patients who are diagnosed at stage II head and neck cancer, only 70 percent are likely to be cured.

Therefore, you will need to undergo periodic follow-up physicals, scans and other tests according to a schedule. The specific schedule will depend on the specific type of cancer you had, in addition to the specific course of treatment you received. The clinicians will carefully assess you to confirm that the cancer has not returned and that you still have no evidence of disease.

Staying Vigilant

Although this may be stressful and cause anxiety for you, it is best to identify cancer at an early stage. For example, among patients who are diagnosed with stage I head and neck cancer, 90 percent are likely to be cured, whereas among patients who are diagnosed at stage II head and neck cancer, only 70 percent are likely to be cured.

Therefore, you will need to undergo periodic follow-up physicals, scans and other tests according to a schedule. The specific schedule will depend on the specific type of cancer you had, in addition to the specific course of treatment you received. The clinicians will carefully assess you to confirm that the cancer has not returned and that you still have no evidence of disease.

Your Lifestyle

Although your cancer may now be in remission, you may still experience stress and anxiety as a result of your cancer journey. Some patients report feelings of stress and anxiety that increase up until they have the follow-up exam and tests, and then decrease as soon as they are told there is no evidence of disease and that the cancer has not returned. The term for this specific type of stress and anxiety is “scanxiety.”

Other toxicities may be identified at the time of the follow-up exams. For example, approximately 25 percent of patients who had surgery and radiation therapy combinations developed hypothyroidism, the decrease of thyroid hormone production, post-treatment.

You may experience ongoing functional challenges after your treatment is completed, depending on what type of cancer removal surgery, reconstruction or prosthetics you had and how the side effects of other treatments affected you. Some people recover completely and find a “new normal” with relative ease. Others continue to struggle, sometimes for the rest of their lives, to overcome functional challenges with breathing, swallowing and speaking. You may receive speech and/or swallowing rehabilitation; prosthetic devices to help you eat, breathe or speak; and perhaps ongoing therapy to help you continue to improve your quality of life.

A great many head and neck cancer patients adapt quite well and return to a full and rich life after achieving remission.

Recurrence

If you have been successfully treated for cancer that is in remission, but it returns, you have what is called recurrent cancer. Approximately 50 percent of patients successfully treated for squamous cell head and neck cancer will develop recurrent disease within two years of successful treatment.

Recurrent cancer can occur near the original site of the tumour, known as recurrent locoregional cancer, or at distant sites in the body, known as recurrent metastatic cancer. Approximately 30 to 40 percent of patients successfully treated for head and neck cancer will develop recurrent locoregional cancer, whereas between 20 to 30 percent of patients successfully treated for head and neck cancer will develop recurrent metastatic disease.

The best way to handle the possibility of recurrence is to remain vigilant for several years following the end of your treatment. See your doctor regularly for follow-up visits and imaging to reassure yourself that you remain cancer-free or to detect a recurrence as early as possible. Just as it was with your initial diagnosis, the earlier you detect the cancer, the better your prognosis will be.

Life After Cancer

Many head and neck cancer survivors recover very well, both physically and emotionally, and can return to a life that is very similar to what was normal before their cancer journeys began. Others find a “new normal” and settle into their altered lifestyles with relative poise. You may even find that many aspects of your life improve as your appreciation for your wellness and time with loved ones increases. Even so, you may encounter ongoing challenges directly related to your experience with head and neck cancer. This is not unusual, so it is important to recognise when you may need help from a counsellor, psychotherapist, physical therapist or nutritionist to restore your quality of life to the best it can be.

For example, a study evaluating 46 cancer survivors after treatment for head and neck cancer (e.g., laryngeal cancer) found that they had complications several years later. Depression was a problem, with 28 percent of the survivors having moderate depression.

Most patients were still at risk for developing head and neck cancer or another type of cancer; 46 percent of head and neck cancer survivors were smoking, and 86 percent were drinking alcohol.  If you achieve disease remission and still smoke and/or drink excessively, then you should consider obtaining counselling or other services to help you stop smoking and/or drinking.

The head and neck cancer survivors in the same study did very well in their physical recoveries. For example, only 2 percent of the survivors needed to still receive nutrition through a feeding tube, which suggests that most patients could swallow and eat.

Whether you recover well or continue to struggle with challenges related to your head and neck cancer, life after cancer is ultimately what you make of it. Cancer survivors typically advise other survivors to take pride in what they have overcome, value their wellness and find meaning in what they do with the rest of their lives.

Supporting others in their cancer journeys

Cancer survivors have reported that they find it rewarding to share their experience and strategies with others who are at the beginning of their cancer journeys, usually through support groups and even Internet support groups. It helps other patients who are currently experiencing head and neck cancer to know that others have effectively navigated treatment and were successfully treated.

Information that member support groups have found valuable includes reinforcing what they have heard from their physicians (e.g., treatment, monitoring/managing adverse events) in addition to learning how to communicate with their health care professionals.