STEP 3: Diagnosis, staging and treatment planning

Step 3 outlines the process for confirming the diagnosis and stage of cancer and for planning subsequent treatment. The guiding principle is that interaction between appropriate multidisciplinary team members should determine the treatment plan.

Tissue biopsies are required to diagnose Hodgkin lymphoma and DLBCL and before starting definitive treatment. They may have been performed before referral. Both fresh and fixed tissue samples should be collected from the tissue biopsy for anatomical pathology, and potentially flow cytometry, cytogenetics and gene mutation testing.

Nodal architecture is a key part of the pathological examination and therefore excisional biopsy is the preferred biopsy method where possible. Where excisional biopsy or large incisional biopsy is not possible a core needle biopsy that samples the maximum number of cores with the largest calibre possible should be considered (NICE 2016). Fine-needle aspirations are not suitable for diagnosing lymphomas (Armitage et al. 2017).

Surgery is a diagnostic procedure and rarely therapeutic. Therefore, the least invasive surgical method is recommended for diagnosis. If a highly invasive or extensive surgical procedure is being considered, consultation with the multidisciplinary team is required.

Pathology specimens should be reviewed by a pathologist with expertise in diagnosing lymphomas. This should be done at a treatment centre before a treatment plan has been instituted.

Additional testing of the lymphoma should be conducted where relevant to determine appropriate treatment options. For DLBCLs, fluorescence in situ hybridisation can be useful to identify high-grade B-cell lymphomas with MYC and BCL2 or BCL6 rearrangements (NICE 2016).

The timing of diagnostic investigations should be guided by the initial severity of symptoms. Staging (see section 3.2) should be completed within two weeks.

Currently there are no genetic abnormalities known to predispose lymphoma. Any referral made to a familial cancer service should be based on multidisciplinary team recommendations. There are currently no known mutations that require routine testing in these disorders.

Pharmacogenetics describes how individual genetic differences can lead to differences in the way certain medicines interact with the body. These interactions can affect the effectiveness of medications and any side effects. Applying pharmacogenetics to treatment planning may help patients to be prescribed the most appropriate treatment at the optimal dose from the beginning of treatment (NHMRC 2013).

Staging is a critical element in treatment planning and should be clearly documented in the patient’s medical record.

Staging for aggressive Hodgkin lymphoma and DLBCL involves these tests:

  • imaging with an FDG-PET/CT scan – where treatment may include radiation therapy, consultation with a radiation oncologist is required to determine any further imaging and evaluation needs before starting treatment (PET-CT scan should be performed as a radiation therapy planning scan in treatment position in selected patients)
  • laboratory studies to evaluate LDH, calcium and urate (Armitage et al. 2017) – a full blood test should be performed and, if significantly abnormal, bone marrow biopsy should be considered
  • determining a prognostic score using either the International Prognostic Score for Hodgkin lymphoma (Hasenclever & Diehl 1998) or the International Prognostic Index for DLBCL (Shipp 1993)
  • central nervous system (CNS) evaluation including imaging and cerebrospinal fluid sampling in those subsets at high risk, or with clinical symptoms, as indicated by specific extra nodal sites of involvement, a high International Prognostic Index score and/or elevated serum LDH (note that Hodgkin lymphoma rarely involves the CNS and these evaluations are not routinely required in these patients; 5 per cent of cases of systemic DLBCL may involve the CNS).

Viral serology for HIV and hepatitis B/C can assist in refining the differential diagnosis and identifying risk factors for lymphoma as well as potential risks during treatment.

More information

Visit the Cancer Institute New South Wales website for information about understanding the stages of cancer.

Patient performance status is a central factor in cancer care and should be clearly documented in the patient’s medical record.

Performance status should be measured and recorded using an established scale such as the Karnofsky scale or the Eastern Cooperative Oncology Group (ECOG) scale.

A number of factors should be considered at this stage:

  • the patient’s overall condition, life expectancy, personal preferences and decision- making capacity
  • discussing the multidisciplinary team approach to care with the patient
  • appropriate and timely referral to an MDM
  • pregnancy and fertility
  • support with travel and accommodation
  • teleconferencing or videoconferencing as required.

Comorbidities and organ function assessment

It is important to evaluate and document relevant organ functions (e.g. respiratory, renal, hepatic and cardiac), overall functional status and physiological robustness for all patients. These issues are especially important in a geriatric context, where a geriatric assessment can be very useful.

Given the immunosuppressive effects of treatments used for these diseases, testing for occult infections should be performed (e.g. HIV, hepatitis B and C). In patients at risk, consider tuberculous testing.

The multidisciplinary team should meet to discuss newly diagnosed patients before implementing treatment so that a treatment plan can be recommended and there can be early preparation for the post-treatment phase. However, immediate treatment is often required before a full MDM ratifies details of the management plan (which should include full details of the response assessment). The level of discussion may vary, depending on the patient’s clinical and supportive care factors. Some patients with non-complex cancers may not be discussed by a multidisciplinary team; instead the team may have treatment plan protocols that will be applied if the patient’s case (cancer) meets the criteria. If patients are not discussed at an MDM, they should at least be named on the agenda for noting. The proposed treatment must be recorded in the patient’s medical record and should be recorded in an MDM database where one exists.

Teams may agree on standard treatment protocols for non-complex care, facilitating patient review (by exception) and associated data capture.

Results of all relevant tests and access to images should be available for the MDM. Information about the patient’s concerns, preferences and social and cultural circumstances should also be available.

The multidisciplinary team requires administrative support in developing the agenda for the meeting, for collating patient information and to ensure appropriate expertise around the table to create an effective treatment plan for the patient. The MDM has a chair and multiple lead clinicians. Each patient case will be presented by a lead clinician (usually someone who has seen the patient before the MDM). In public hospital settings, the registrar or clinical fellow may take this role. A member of the team records the outcomes of the discussion and treatment plan in the patient history and ensures these details are communicated to the patient’s general practitioner. The team should consider the patient’s values, beliefs and cultural needs as appropriate to ensure the treatment plan is in line with these. There may be early consideration of post-treatment pathways at this point – for example, shared follow-up care.

The multidisciplinary team should be composed of the core disciplines that are integral to providing good care. Team membership should reflect both clinical and supportive care aspects of care. Pathology and radiology expertise are essential.

See ‘About this OCP’ for a list of team members who may be included in the multidisciplinary team for Hodgkin lymphoma and DLBCL.

Core members of the multidisciplinary team are expected to attend most MDMs either in person or remotely via virtual mechanisms. Additional expertise or specialist services may be required for some patients. An Aboriginal and Torres Strait Islander cultural expert should be considered for all patients who identify as Aboriginal or Torres Strait Islander.

The general practitioner who made the referral is responsible for the patient until care is passed to another practitioner who is directly involved in planning the patient’s care.

The general practitioner may play a number of roles in all stages of the cancer pathway including diagnosis, referral, treatment, shared follow-up care, post-treatment surveillance, coordination and continuity of care, as well as managing existing health issues and providing information and support to the patient, their family and carer.

A nominated contact person from the multidisciplinary team may be assigned responsibility for coordinating care in this phase. Care coordinators are responsible for ensuring there is continuity throughout the care process and coordination of all necessary care for a particular phase (COSA 2015). The care coordinator may change over the course of the pathway.

The lead clinician is responsible for overseeing the activity of the team and for implementing treatment within the multidisciplinary setting.

Patients should be encouraged to participate in research or clinical trials where available and appropriate.

For more information visit the Cancer Australia website.

Treatment initiation is usually required promptly for these disorders, but there may be little time to pursue prehabilitation. Cancer prehabilitation uses a multidisciplinary approach combining exercise, nutrition and psychological strategies to prepare patients for the challenges of cancer treatment. Team members may include anaesthetists, oncologists, surgeons, haematologists, clinical psychologists, exercise physiologists, physiotherapists and dietitians, among others.

Patient performance status is a central factor in cancer care and should be frequently assessed. All patients should be screened for malnutrition using a validated tool, such as the Malnutrition Screening Tool (MST). The lead clinician may refer obese or malnourished patients to a dietitian preoperatively or before other treatments begin.

Patients who currently smoke should be encouraged to stop smoking before receiving treatment. This should include an offer of referral to Quitline in addition to smoking cessation pharmacotherapy if clinically appropriate.

Evidence indicates that patients who respond well to prehabilitation may have fewer complications after treatment. For example, those who were exercising before diagnosis and patients who use prehabilitation before starting treatment may improve their physical or psychological outcomes, or both, and this helps patients to function at a higher level throughout their cancer treatment (Cormie et al. 2017; Silver 2015). Prehabilitation is most routinely utilised prior to stem cell transplantation.

For patients with Hodgkin lymphoma and DLBCL, the multidisciplinary team should consider these specific prehabilitation assessments and interventions for treatment-related complications or major side effects:

  • conducting a physical and psychological assessment to establish a baseline function level
  • identifying impairments and providing targeted interventions to improve the patient’s function level (Silver & Baima 2013)
  • reviewing the patient’s medication to ensure optimisation and to improve adherence to medicine used for comorbid conditions.

Following completion of primary cancer treatment, rehabilitation programs have considerable potential to enhance physical function.

Cancer and cancer treatment may cause fertility problems. This will depend on the age of the patient, the type of cancer and the treatment received. Infertility can range from difficulty having a child to the inability to have a child. Infertility after treatment may be temporary, lasting months to years, or permanent (AYA Cancer Fertility Preservation Guidance Working Group 2014).

Patients need to be advised about and potentially referred for discussion about fertility preservation before starting treatment and need advice about contraception before, during and after treatment. Patients and their family should be aware of the ongoing costs involved in optimising fertility. Fertility management may apply in both men and women. Fertility preservation options are different for men and women and the need for ongoing contraception applies to both men and women.

The potential for impaired fertility should be discussed and reinforced at different time points as appropriate throughout the diagnosis, treatment, surveillance and survivorship phases of care. These ongoing discussions will enable the patient and, if applicable, the family to make informed decisions. All discussions should be documented in the patient’s medical record.

More information

See the Cancer Council website for more information.

See validated screening tools mentioned in Principle 4 ‘Supportive care’.

A number of specific challenges and needs may arise for patients at this time:

  • assistance for dealing with physical, nutritional, wellbeing and immunological issues – these can arise due to lymphoma or DLBCL; some can be life-threatening and can affect quality of life (referral to an appropriate clinician may be required)
  • psychological and emotional distress while adjusting to the diagnosis, treatment phobias, existential concerns, stress, difficulties making treatment decisions, anxiety, depression, psychosexual issues (e.g. potential loss of fertility, premature menopause, history of sexual abuse) and interpersonal problems
  • management of physical symptoms such as pain and fatigue (Australian Adult Cancer Pain Management Guideline Working Party 2019)
  • low levels of vitamin D
  • malnutrition or undernutrition, identified using a validated nutrition screening tool such as the MST (note that many patients with a high BMI [obese patients] may also be malnourished [WHO 2018])
  • support for families or carers who are distressed with the patient’s cancer diagnosis
  • support for families/relatives who may be distressed after learning of a genetically linked cancer diagnosis
  • specific spiritual needs that may benefit from the involvement of pastoral/spiritual care.

Additionally, palliative care may be required at this stage.

For more information on supportive care and needs that may arise for different population groups, see Appendices A and B, and special population groups.

In discussion with the patient, the lead clinician should undertake the following:

  • clarify the patient’s wishes/needs and adapt recommendations from the multidisciplinary team accordingly
  • establish if the patient has a regular or preferred general practitioner and if the patient does not have one, then encourage them to find one
  • provide written information appropriate to the health literacy of the patient about the diagnosis and treatment to the patient and carer and refer the patient to the Guide to best cancer care (consumer optimal care pathway) for lymphoma, as well as to relevant websites and support groups as appropriate
  • provide a treatment care plan including contact details for the treating team and information on when to call the hospital
  • discuss a timeframe for diagnosis and treatment with the patient and carer
  • discuss the benefits of multidisciplinary care and gain the patient’s consent before presenting their case at an MDM
  • provide brief advice and refer to Quitline (13 7848) for behavioural intervention if the patient currently smokes (or has recently quit), and prescribe smoking cessation pharmacotherapy, if clinically appropriate
  • recommend an ‘integrated approach’ throughout treatment regarding nutrition, exercise and minimal or no alcohol consumption among other considerations
  • communicate the benefits of continued engagement with primary care during treatment for managing comorbid disease, health promotion, care coordination and holistic care
  • where appropriate, review fertility needs with the patient and refer for specialist fertility management (including fertility preservation, contraception, management during pregnancy and of future pregnancies)
  • be open to and encourage discussion about the diagnosis, prognosis (if the patient wishes to know) and survivorship and palliative care while clarifying the patient’s preferences and needs, personal and cultural beliefs and expectations, and their ability to comprehend the communication
  • encourage the patient to participate in advance care planning including considering appointing one or more substitute decision-makers and completing an advance care directive to clearly document their treatment preferences. Each state and territory has different terminology and legislation surrounding advance care directives and substitute decision-makers.

The lead clinician has these communication responsibilities:

  • involving the general practitioner from the point of diagnosis
  • gather information from the general practitioner, including their perspective on the patient (psychological issues, social issues and comorbidities) and locally available support services
  • ensuring regular and timely communication with the general practitioner about the diagnosis, treatment plan and recommendations from MDMs and inviting them to participate in MDMs (consider using virtual mechanisms)
  • supporting the role of general practice both during and after treatment
  • discussing shared or team care arrangements with general practitioners or regional cancer specialists, or both, together with the patient
  • contribute to developing a chronic disease and mental health care plan as required.
More information

Refer to Principle 6 ‘Communication’ for communication skills training programs and resources.