How cancer is diagnosed and the impact of diagnosis

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4 How cancer is diagnosed and the impact of diagnosis

Chapter aims

• To understand how cancer is investigated

• To understand how cancers are classified and staged

• To appreciate the impact of a cancer diagnosis

How cancer is investigated

Whether an individual is asymptomatic and the cancer is detected during a routine screening programme or at another health event (such as a routine preoperative chest X-ray) or whether they present with significant signs and symptoms, most patients will be referred to an appropriate clinician/consultant. At this point, the most likely causes of the sign/symptom is considered and further investigations are undertaken to make a definitive diagnosis. There are a whole range of tests that are done, depending on the suspected site, but generally patients undergo one or a few of the following:

• Positron emission tomography (PET).

• Computed tomography (CT).

• Bone scan.

• Magnetic resonance imaging (MRI).

• X-ray.

• Tumour markers as well as other blood tests.

Tumour markers are hormones, antigens or enzymes produced by the cancer itself or by tissues stimulated by the cancer. However, the presence of a tumour marker does not always mean a patient has cancer. For instance, a raised prostate-specific antigen (PSA) may indicate prostate cancer. However, an individual may have an increased PSA due to a benign prostate condition or physical stimulation of the prostate such as sexual intercourse. Other common tumour markers are CA-125 for ovarian and colorectal gastric cancer, and carcinoembryonic antigen (CEA) for breast, colorectal and lung cancer. Immunohistochemistry (IHC) is used to test whether a patient is over expressing these receptors. For example, 30–40% of patients with breast cancer are positive for human epidermal receptors (HER2). If positive, the type of cancer may be more aggressive but the patient may be a good candidate for the drug Herceptin (trastuzumab).

Depending on the type of cancer, some patients may have a test to see if hormones are affecting the growth of the cancer, such as prostate and breast cancer. A significant number of breast cancers have increased oestrogen growth receptors on the cell surface; this means that the cancer grows more easily in the presence of oestrogen. These cancers are known as hormone sensitive or hormone positive (ER +). Other breast cancers may be progesterone sensitive (PR +). If a breast cancer is not sensitive to oestrogen, progesterone or HER2 then it is triple negative. Triple negative breast cancers tend to be more aggressive and develop in younger women.

A cancer diagnosis can only be made when a sample of tissue has been taken, usually in the form of a biopsy (tissue) or cytology (body fluids). When these have been analysed, the histopathology (type of cancer) can be identified and classified.

To identify if the cancer has spread to any of the local lymph nodes, sometimes a sentinel node biopsy is performed. This involves injecting a blue dye (and sometimes a radioactive liquid) into areas close to the cancer, while the patient undergoes surgical removal of the lump. The lymph nodes are then scanned or observed to see which lymph node(s) take up the dye/radioactive liquid. The node that shows up is known as the sentinel node and is removed and sent to be tested for cancer. This helps the staging process and may aid treatment decisions, which may mean less treatment and less long-term side effects.

By the time investigations are underway, the majority of patients will be informed of the possible causes of the symptoms, and by the time the results are confirmed, the news of cancer is not a complete surprise. Most patients are informed of the diagnosis in the outpatient setting or on a general medical or surgical ward, so you may not witness diagnosis being given on an oncology placement.

image Activity

The Royal College of Radiologists has produced a range of patient information on interventional radiology, diagnostic radiology and oncology procedures. Visit the following Website and look up some of the investigations you have heard about on placement or have witnessed:

http://www.rcr.ac.uk/content.aspx?PageID=323 (accessed May 2011).

NMC Domain 3: 3.1; 3.2; 3.3; 3.6

image Activity

Watch a biopsy being performed. Write a brief reflection on the procedure. Think about preparing the patient and maintaining safety and patient comfort. Find out how the specimen is processed.

NMC Domain 1: 1.4

NMC Domain 2: 2.4

NMC Domain 3: 3.1; 3.2; 3.6

image Activity

Visit or escort a patient to the radiology department and observe a scan. Alternatively, visit the Macmillan Website:

http://www.macmillan.org.uk/Cancerinformation/​Cancerinformation.aspx (accessed May 2011).

On this Website, look at one type of cancer and identify the common investigations that a patient may undergo. For example, lung cancer investigations can be found at:

http://www.macmillan.org.uk/Cancerinformation/​Cancertypes/Lung/Symptomsdiagnosis/​Diagnosistests/Tests.aspx (accessed May 2011).

NMC Domain 3: 3.1; 3.3; 3.6

How cancers are classified and staged

Once a diagnosis has been established, a referral to an appropriate surgeon or oncologist (cancer specialist) is made to review the situation, stage and classify the cancer in order for treatment to be planned.

From a psychological perspective, the point of diagnosis is usually not the start of the story for the patient; they may have experienced symptoms for some months. Receiving a definitive diagnosis may be a relief, providing answers to questions and confirming what is wrong, and it may remove the anxiety associated with the sense of uncertainty. For others it may be a total shock.

image Activity

Identify a patient with cancer. Look through their medical notes to find out which investigations they had in order to reach a diagnosis (CT, MRI, PET, biopsy, bone scan, etc.).

NMC Domain 3: 3.2; 3.3

Classification

The results from the investigations may help to establish the type, position, size, grade and stage of the cancer. These will all be used to ensure an appropriate treatment is selected, along with a thorough assessment of the patient (this is discussed in Ch. 5). It is very important that the right words are used to describe all aspects of the cancer so that healthcare professionals are aware of the situation and the patient is not confused with too many different medical terms.

The word tumour is often used and, although it means ‘lump’, it is an ambiguous term and can mean either benign or malignant. This can confuse patients. If they are told they have a tumour, they may assume that they have a benign condition, when they actually have a malignant cancer. Although benign tumours can cause problems due to their size; be painful or unsightly; press on other body organs; take up space inside the skull (for example, like a brain tumour); and release hormones that affect how the body works, they are not cancers. Cancers are made up of malignant cells which are discussed in Chapter 2, so it is best to avoid the use of the word ‘tumour’, and use the word ‘cancer’ so that patients do not become confused. The main differences between benign and malignant tumours are given in Table 4.1.

Table 4.1 Difference between benign and malignant tumours

Benign Malignant
Slow growing Usually faster growing
Encapsulated Irregular in shape
Cells appear normal under the microscope Spreads locally and destroys the surrounding tissues
Does not spread to other parts of the body Spreads to other parts of the body

In the clinical setting, tumours are described according to their histogenesis (the names are specific to the cells/tissues from which they arise) and are often named from Greek and Latin terms. In general, benign tumours end in the suffix ‘-oma’ which means ‘lump’ in Latin. Malignant cancers usually have a prefix to the ‘-oma’ which is related to the tissue of origin. For example, malignant tumours that derive from epithelial tissues (lining tissues) are called carcinomas. Carcinomas account for 75% of all cancers and there are two types of carcinoma – adenocarcinoma (cancer in glandular tissue) and squamous cell carcinoma (cancer in squamous epithelium). Cancers arising in the connective tissues (bone, cartilage, muscle, fibrous tissue) are called sarcomas (accounting for 20% of cancers) and cancers in the neural tissue are called blastomas.

The specific names of tumours (both benign and malignant) are also made up of the specific tissue in the body (Table 4.2). So a benign, non-malignant tumour in the unstriated smooth muscle would be called a ‘leio-my-oma’ and a malignant cancerous tumour in the unstriated smooth muscle would be a ‘leio-myo-sarc-oma’. There are some exceptions to this rule. For instance, using the rules above, melanoma and lymphoma sound like they are benign tumours when in fact they are malignant.

Table 4.2 Naming of tumours

Adeno- Glandular tissue
Haemo- Blood
Angio- Vessels
Lipo- Fat
Osteo- Bone
Myo- Muscle
Rhabdo- Striated muscle
Leio- Unstriated (smooth) muscle
Chondro- Cartilage
Endo- Lining

Other cancers are named after the researcher who first described them, for example Hodgkin’s lymphoma and Kaposi’s sarcoma.

Staging

To ascertain the extent that the cancer has grown, many cancers are staged using the TNM classification (Sobin et al 2010). This divides cancers into groups to provide a precise description:

• Tumour (T): identifies the primary tumour, size and infiltration.

• Node (N): identifies lymph node involvement.

• Metastatic (M): represents presence or absence of distant metastases.

Staging is important to indicate prognosis (likely outcome) as well as guide decisions regarding treatment. For instance, if a cancer is very large or if it has spread to a distant part then surgery will not remove the cancer completely, and an alternative treatment will be considered. Staging also aids communication between healthcare professionals and to measure the success of treatment.

There are other methods of staging cancers. For example, Table 4.3 outlines Dukes staging of colorectal cancer (Dukes 1932).

Table 4.3 Dukes staging of colorectal cancer

image

Grading

Grading refers to how mutated the cells have become. The more a cell mutates, the more it may lose all resemblance to the normal tissue from which it arises. Grading is based on the appearance of the cancer under the microscope. Sometimes it is impossible to tell what type of cell a mutated cell was originally, and this leads to the diagnosis of unknown primary. The extent to which a cancer resembles the normal tissue is known as the degree of differentiation (Table 4.4).

Table 4.4 Grading of cancer

Well differentiated Grade I
Resembles normal cell – low grade
Moderately differentiated Grade II
Some similarities to normal cell
Poorly differentiated Grade III
Very immature, little resemblance to normal cell
Undifferentiated (anaplastic/dedifferentiated) Grade IV
No resemblance to original tissue – high grade

The differentiation or grade provides some indication of how mutated the cells look and how similar they are in terms of function compared to the normal cells. This is clinically helpful to predict prognosis. For example, when staging breast cancer, the Nottingham Prognostic Index (NPI) is often used (Haybrittle, Blamey and Elston 1982). This is a formula which gives an indication of how successful treatment might be, by considering the size of the cancer, whether or not the cancer has spread to the lymph nodes under the arm (and, if so, how many nodes are affected) and the grade of the cancer.

The formula is: NPI = (0.2 × cancer diameter in cm) + lymph node stage + cancer grade.

The lymph node stage is rated 1 if there are no nodes affected; 2 if up to three glands are affected or 3 if more than three glands are affected.

The cancer grade is scored 1 for a grade I less aggressive appearance, 2 if a grade II intermediate appearance or 3 for a grade III, more aggressive appearance.

Applying the formula gives scores which fall into three bands:

1. Less than 3.4 suggests a good outcome with a high chance of a cure.

2. 3.4–5.4 suggests an intermediate level with a moderate chance of a cure.

3. More than 5.4 suggests a worse outlook with less chance of a cure.

image Activity

Select a patient you are caring for, either an individual who is in hospital or one being cared for in the community. Look through their medical notes to identify what the name of their cancer is, how this relates to the type of tissue the cancer is present in and what the staging and grade of the cancer are. Discuss with your mentor how this information has influenced the patient’s treatment and nursing care.

NMC Domain 3: 3.1; 3.2

The staging and grading information will be discussed at a multiprofessional meeting where all possible treatment options will be identified. All the possible options will be explained to the patient to help them decide which treatment to undergo. Chapter 8 outlines different treatment options and explores why one treatment might be chosen over another.

The impact of a cancer diagnosis

It may seem odd, but you may not have the opportunity to witness someone being told they have cancer while you are on your cancer/palliative placement. This is because individuals are often admitted to a medical or surgical ward with signs and symptoms which, once investigated, are found to result from cancer. From this point, the patient will be referred to an appropriate specialist who will pursue further tests. It is important that the person delivering the news is prepared; they should have as much information as they can and have undergone training in breaking significant news.

The East Midlands Cancer Network (2010) outlines ‘eleven well recognised steps to breaking bad news’ in their nationally recognised guidelines (Box 4.1)

Box 4.1 The East Midlands Cancer Network (2010) guidelines for communicating bad news with patients and their families

image Step one – preparation and scene setting

image Step two – what does the patient know?

image Step three – is more information wanted at that time?

image Step four – give a warning shot

image Step five – allow patient to decline information at this time

image Step six – explain (if requested)

image Step seven – elicit and listen to concerns

image Step eight – encourage ventilation of feeling

image Step nine – summary and plan

image Step ten – offer availability and support

image Step eleven – communicate with the team

These steps provide healthcare professionals (of all grades) with practical help in all care settings, to communicate bad news in an effective manner. These guidelines can be looked at shortly before seeing a patient, but are not intended to be used rigidly as everyone reacts differently to being given the news they have cancer. Predicting how someone might react is equally as difficult as it is to predict what the impact of diagnosis or outcome might be. Reaction is often influenced by whether the individual was expecting the news. If the cancer is identified during a routine screening and they don’t have any symptoms, then it might be a complete shock. For others who have experienced symptoms over a long period of time, it might be a relief to have an answer to the cause of the problems, often enabling the symptoms to be alleviated by treatment.

Previous experience and knowledge of cancer may influence how individuals comprehend their situation. An individual who has observed or cared for friends and family with a cancer may use this experience to foresee what their experience is likely to be and what they expect to happen. These encounters also affect an individual’s attitudes and beliefs regarding what caused the cancer and what the likely outcome might be. One of the difficulties is that no two cancer experiences can be compared, even if they are cancers of the same anatomical site. Despite this, patients will often compare experiences with other patients or people they know who have had cancer, even if is a completely different type of cancer, having completely different treatment, with a completely different outcome. Previous experiences may also influence a patient when they are deciding on treatment options.

The stage and grade of cancer may or may not affect the impact, so someone who is diagnosed with an advanced, aggressive, metastatic cancer may not necessarily be more distressed than someone who is diagnosed with a small, non-aggressive local cancer.

The way a diagnosis is given and who gives the news can influence the situation. It is normally a consultant who imparts the news initially, but the role of the nurse is important, allowing the patient and family time to digest the information to clarify what has been said and to answer questions.

image Reflection point

What else might affect someone’s reaction to a cancer diagnosis? How might an individual react? What sort of emotions might they experience?

Visit The Patient Experience Website to watch a video of a patient’s experience of diagnosis and the patient pathway:

http://www.patient-experience.com/index.php/diagnosis-of-breast-cancer-blog/ (accessed November 2011).

NMC Domain 1: 2.4

NMC Domain 3: 3.4; 3.9

One of the most common questions patients want to know is ‘Why me?’ and ‘What have I done?’ It is a normal reaction to try and find meaning in a situation and identify the reason something has happened. However, these questions are impossible to answer and may cause enormous angst. A diagnosis can be seen as a punishment or they may feel guilty for their life choices or behaviours (especially if they perceive their actions may have contributed to the cancer developing). People might want to blame something or somebody, often themselves, asking questions such as ‘Why did I smoke when I knew it was bad for me?’ or ‘Why didn’t I go to the doctor earlier?’ Other reactions might be disbelief – ‘How could this have happened?’ Denial is a common reaction – ‘They have made a mistake with the results…’ – or using distraction by focusing on other things to ignore the trauma of the immediate situation. Some may not want to talk about the cancer or may not wish to say the word ‘cancer’. Some patients are angry, often at the perceived (or actual) inadequacies of the health service.

At the point of diagnosis, there is an enormous sense of uncertainty, associated with many questions:

• Can it be treated?

• What treatments are there?

• Am I going to die?

• How long have I got?

It may take a number of weeks and months before some of these questions can be answered (some may never have an answer) and, during this time, patients require information to help them deal with the many unanswered questions. To help them cope with the uncertainty, some patients may rekindle a religious faith while others may lose faith in religion. Either way, it is vital that a therapeutic relationship is developed between the patient and healthcare team, so that the patient feels that the healthcare team are knowledgeable, experienced and will do the very best they can.

On the healthtalkonline Website, you can listen to patients’ experiences and what it feels like to be diagnosed with cancer:

http://www.healthtalkonline.org/Cancer/ (accessed November 2011).

image Reflection point

What questions do you think a newly diagnosed individual might ask? How can you prepare for these questions?

NMC Domain 2: 2.2; 2.3; 2.4

NMC Domain 3: 3.8

image Activity

Read Thain and Palmer (2010) (see References) to explore some of the techniques and strategies to minimise shock and distress (for example ‘the SPIKES protocol).

NMC Domain 1: 1.9

NMC Domain 2: 2.1; 2.2; 2.3; 2.4; 2.5

NMC Domain 4: 4.2

Once diagnosis has been given, patients need time and support to try to comprehend what is happening to them, so they can adjust to their situation. This is generally a difficult time for all who know the person (in varying degrees). Friends, colleagues, neighbours and family may avoid seeing the individual as they don’t know what to say and worry they will say the wrong thing. This may result in the individual feeling isolated and stigmatised.

image Activity

List what might be the implications of a diagnosis of cancer on an individual:

image physically

image emotionally

image socially

image economically

NMC Domain 3: 3.3; 3.4; 3.7

It is vital that the individual knows who they can contact and talk to regarding their anxieties and questions. Many clinical areas use an assessment tool such as the ‘distress thermometer’ (Fig. 4.1) to help patients and healthcare professionals identify specific issues patients might be experiencing. Assessment tools like this one are quick and easy to use, allowing the patient to identify any problems (physical, social, economic or psychological) they may be experiencing. Once patients and healthcare professionals have recognised the patients’ problems, then something can be done to support them. This doesn’t mean to say healthcare professionals have ‘all the answers’ as often there are not any definitive answers and we can’t always ‘solve the situation’. Often it is enough to sit with the patient and family and listen to their concerns: some situations may require the healthcare professional to provide information; other situations may require the healthcare professional to offer direct help; still other situations may require a referral to other health professionals or other agencies (support groups/charities) for specialised intervention/care/support. This type of assessment and intervention is covered in Section 2 where aspects of a cancer patient’s experience are explored.

image

Fig 4.1 The distress thermometer

(adapted from Roth et al (1998) and National Comprehensive Cancer Network NCCN (2007))

References

Dukes C.E. The classification of cancer of the rectum. Journal of pathological bacteriology. 1932;35:323.

East Midlands Cancer Network. The guidelines for communicating bad news with patients and their families: significant news. Online. Available at: http://www.eastmidlandscancernetwork.nhs.uk/Library/​BreakingBadNewsGuidelines.pdf, 2010. (accessed May 2011)

Haybrittle J.L., Blamey R.W., Elston C.W. A prognostic index in primary breast cancer. British Journal of cancer. 1982;45(3):361–366.

National Comprehensive Cancer Network. Clinical practice guidelines in oncology: distress management. Online. Available at: http://www.nccn.org/professionals/physician_gls/f_guidelines.asp, 2007. (accessed November 2011)

Roth A.J., Kornblith A.B., Batel-Copel L., et al. Rapid screening for psychologic distress in men with prostate carcinoma: a pilot study. Cancer. 1998;82:1904–1908.

Sobin L.H., Gospodarowicz M.K., Wittekind C.H. TNM classification of malignant tumours, 7th ed., New York: Wiley–Liss, 2010.

Thain C., Palmer C. Strategies to ensure effective and empathetic delivery of bad news. Cancer Nursing Practice. 2010;9(9):24–27.

Further reading

Bultz B.C., Carlson L.E. Emotional distress: the sixth vital sign in cancer care. J. Clin. Oncol.. 2005;23(26):6440–6441.

Campbell J. Understanding social support for patients with cancer. Nurs. Times. 2007;103(23):28–29.

Edwards B., Clarke V. The psychological impact of a cancer diagnosis on families: the influence of family functioning and patients’ illness characteristics on depression and anxiety. Psychooncology. 2004;13(8):562–576.

Pitceathly C., Maguire P. The psychological impact of cancer on patients’ partners and other key relatives: a review. Eur. J. Cancer. 2004;39(11):1517–1524.

Ryan H., Schofield P., Cockburn J., et al. How to recognize and manage psychological distress in cancer patients. Eur. J. Cancer Care (Engl.). 2005;14:7–15.

Saaegrov S., Haling A. What is it like living with a diagnosis of cancer? Eur. J. Cancer Care (Engl.). 2004;13:145–153.

Stringer S. Psychosocial impact of cancer. Cancer Nursing Practice. 2008;7(7):32–34. 37

Websites

Macmillan patient information, http://www.macmillan.org.uk/Home.aspx (accessed May 2011).

Royal College of Radiologists patient information, http://www.rcr.ac.uk/content.aspx?PageID=323 (accessed May 2011).

The Patient Experience Website, http://www.patient-experience.com/index.php/diagnosis-of-breast-cancer-blog/ (accessed July 2011).

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