Recurrent or progressive disease is very common for patients with high-grade glioma. For some patients the initial treatment will not control the tumour(s). Others may present with symptoms of recurrent disease after a previous cancer diagnosis. Access to the best available therapies, including clinical trials, as well as treatment overseen by a multidisciplinary team, are crucial to achieving the best outcomes for anyone with recurrent or progressive disease.

Signs and symptoms will depend on the type of cancer initially diagnosed and the location of the recurrent or progressive disease. They may be discovered by the patient or by surveillance in the post-treatment period. Symptoms can often present as described in section 2.1.

Managing recurrent or progressive disease is complex and should therefore involve all the appropriate specialties in a multidisciplinary team including palliative care where appropriate. From the time of diagnosis, the team should offer patients appropriate psychosocial care, supportive care, advance care planning and symptom-related interventions as part of their routine care. The approach should be personalised to meet the patient’s individual needs, values and preferences. The full complement of supportive care measures as described throughout the optimal care pathway and in Appendices A and B, and special population groups should be offered to assist patients and their families and carers to cope. These measures should be updated as the patient’s circumstances change.

Survivorship care should be considered and offered at an early stage. Many people live with advanced cancer for many months or years. As survival is improving in many patients, survivorship issues should be considered as part of routine care. Health professionals should therefore be ready to change and adapt treatment strategies according to disease status, prior treatment tolerance and toxicities and the patient’s quality of life, in addition to the patient’s priorities and life plans.

If there is an indication that a patient’s cancer has returned or progressed, care should be provided under the guidance of a treating specialist. Each patient should be evaluated to determine if referral to the original multidisciplinary team is necessary. Often referral back to the original multidisciplinary team will not be necessary unless there are obvious aspects of care involving different therapeutic and supportive care disciplines not otherwise accessible. The multidisciplinary team may include new members such as palliative care specialists.

Treatment will depend on the location, extent of recurrent or progressive disease, previous management and the patient’s preferences.

There is currently no standard treatment for patients with recurrent or progressive high-grade glioma; however, treatment may include:

• repeat surgery
• radiation
• systemic therapies.

Treatment may focus on disease control or palliation, based on the extent of disease, general health or the patient’s preferences and values. The potential goals of treatment should be discussed, respecting the patient’s cultural values, and wherever possible written information should be provided.

Encourage early referral to clinical trials or accepting an invitation to participate in research.

Advance care planning is important for all patients with a cancer diagnosis but especially those with advanced disease. Patients should be encouraged to think and talk about their healthcare values and preferences with family or carers, appoint a substitute decision-maker and consider developing an advance care directive to convey their preferences for future health care in the event they become unable to communicate their wishes (AHMAC 2011).

Refer to section 4.3 ‘More information’ for links to resources.

Refer patients and carers to Advance Care Planning Australia or to the Advance Care Planning National Phone Advisory Service on 1300 208 582.

Early referral to palliative care can improve the quality of life for people with cancer. (Haines 2011; Temel et al. 2010; Zimmermann et al. 2014). Given the poor prognosis of high-grade glioma, all patients should have a palliative care approach introduced to care, and referral to a palliative care specialist is required. The treatment team should emphasise the value of palliative care in improving symptom management and quality of life to patients and their carers. The lead clinician should ensure timely and appropriate referral to palliative care services.

Refer to section 4.3 for more detailed information.

Refer to the end of section 4.3 ‘Palliative care’ for links to resources.

The treatment team should support the patient to participate in research and clinical trials where available and appropriate.

For more information visit the COGNO website and the Cancer Australia website.