The management of metastatic prostate cancer in New Zealand –

room for improvement?Ross Lawrenson, Charis Brown, Nina Scott, Chunhuan Lao, Michael Holmes,

Zuzana Obertová, Peter Fong, Leanne Tyrie, George Laking, Peter Gilling

Cancer Research Centre Waikato Clinical CampusUniversity of Auckland

Acknowledgements• HRC • Ministry of Health• Waikato Medical Research Foundation • Prostate Cancer Foundation• Sarah FitzGibbons Bequest• Janssen Pharmaceuticals

Background• 3000 NZ men p/a are diagnosed with prostate cancer

• 560 will die each year from metastatic prostate cancer

• 60% of these men had metastatic disease at first diagnosis

• 25,000 NZ men are living with a diagnosis of prostate cancer

• There are no agreed New Zealand guidelines for the management of metastatic prostate cancer

Hypothesis

• Improved management of men with metastatic disease would help increase survival from prostate cancer and improve quality of life

Prostate cancer

American Joint Committee on Cancer (AJCC) Staging System

• The AJCC staging system is based on 3 factors– T: the size, extent, and penetration of the tumor– N: the number or location of cancer-involved

lymph nodes– M: the presence of sites of metastases

American Joint Committee on Cancer. American Joint Committee on Cancer. Cancer Staging: What You Need to Know? Chicago, IL: American Joint Committee on Cancer; 2010.

T4 Prostate Cancer – regional/distant spread

Illustration courtesy of the American Society of Clinical Oncology

Age standardised incidence of prostate cancer in NZ 1948 to 2008 per 100,000 men

Characteristics of 535 men with prostate cancer – 65 (12.1% with metastases)

• 19% Maori diagnosed with metastatic disease

• 10% of NZ Europeans

40-59 60-69 70-79 80+ 0

10

20

30

40

50

60

70

80

90

Local Local spread Mets

Outcomes from prostate cancer

Outcomes from prostate cancer

= UK survival

Outcomes for Māori – all cases and non localised cases

Non-localised cancersCancer-specific HR 2.95

[95% CI, 2.31, 3.77]

All cancers cancer-specific HR 2.01

[95% CI, 1.21, 3.36]

Recommendations from the Prostate Cancer Taskforce – MoH

2012

Metastatic prostate cancer

36. New Zealand Clinical Practice Guidelines are developed for metastatic prostate cancer.

37. Research is undertaken to determine the burden of disease and reduce inequities in Māori men with metastatic prostate cancer.

Treatment of Metastatic Prostate Cancer – the Map of Medicine

pathway

Hormone therapy

• Hormone therapy – or androgen deprivation therapy (ADT) may involve bilateral orchidectomy (castration) or pharmacologic therapy.

• Two types of pharmacologic ADT – anti androgens and luteinizing hormone-releasing hormone (LHRH) agonists

• These treatments which can be used sequentially and in combination.

• There is limited evidence on the optimal sequencing and combination of these treatments.

Other treatments

• Chemotherapy, in particular docetaxel (Approved by PHARMAC in 2011)

• Palliative radiation treatment

• Palliative, supportive and hospice care

The Metastatic Prostate Cancer Study

Three areas of investigation:

1.Investigation of the management of metastatic prostate cancer using National data (2006-2011)

2.Pathways and cost of care for metastatic PCa patients in the Midland Cancer Network (2009-2012)

3.Men’s perspective on living with metastatic prostate cancer

Study One

Method

• Used data from the National Cancer registry

• Men aged 40+ yrs diagnosed with prostate cancer (ICD10 C61) between 1 Jan 2006 and 31 Dec 2011

• Linked the data to the National Pharmaceutical database identifying use of Androgen Deprivation Therapy and Chemotherapy

• Linked the cases to the national Minimum Data Set from hospitals to identify those who had an orchidectomy

National Cancer Registry data 2006 to 2011

• Identified 15,947 new cases of prostate cancer• 11,432 (72%) the stage of diagnosis was not

recorded• 4515 cases were staged

– 2385 (53%) were localised– 1205 (27%) classified as local spread– 925 (20%) classified as metastatic

National Cancer Registry data Māori 2006 to 2011

• Identified 908 new cases of prostate cancer

• 684 (76%) the stage of diagnosis was not recorded

• 224 cases were staged– 83 (37%) were localised– 61 (27%) classified as local spread– 80 (36%) classified as metastatic

Treatment

• 4978/15947 men (31.2%) received ADT or

chemotherapy within first year post-diagnosis

• 24 men (0.2%) received chemotherapy: most

common doxorubicin (11), docetaxel (5)

• Orchidectomy: 2.3% (367/15,947); 165 with

pharmacologic ADT

Use of Pharmacologic ADT by ethnicity (first 12 mnths of dx)

71.8%(664/925)

22.1% (266/1205)31.2% (4978/15947)

Lawrenson, et al. J Cancer. 2014; 5(3): 214–220. Published online Feb 14, 2014. doi: 10.7150/jca.8152

Māori compared with non-Māori

• Māori men with metastatic disease were more likely to receive anti-androgen treatment (72.5%) compared with non Māori (58.2%)

• Māori men were more likely to be treated with orchidectomy (3.2%) compared to non Māori (2.2%)

Study Two

Method• Identified 2127 patients diagnosed with prostate

cancer in the Midland Cancer Network region from the NZ Cancer Registry (2009-2012)

• Clinical notes reviewed and all patients staged

• Linked the patient records of those staged as metastatic to the Pharmaceutical and Mortality national data sets

• Costing data from National Hospital data and Waikato District Health Board costing data

Distribution of sample by age and ethnicity: 234 men (11.0%) metastatic

40-59 60-69 70-79 80+0

10

20

30

40

50

60

70

80

90

100

Non Māori Māori

Outcomes for Māori and non Māori with metastatic prostate cancer (n=234)

Maori

Characteristics of patients treated

 Number of

patientsRadiotherapy ADT Chemotherapy

Ethnicity 

Maori/Pacific 26 50.0% 80.8% 0

non-Maori/non-Pacific

208 39.4% 83.2% 2.4%

Age

<60 17 70.6% 94.1% 5.9%

60-69 53 50.9% 90.6% 3.8%

70-79 73 35.6% 84.9% 2.7%

80+ 91 33.0% 74.7% -

Total 234 40.6% 82.9% 2.1%

 

Anti-androgensLuteinizing hormone releasing hormone

Combined androgen blockade

Total (n)

BicalutamideCyproterone

acetateFlutamide

Goserelin acetate

Leuprorelin    

Oncology 6.5% 16.1% 6.5% 35.5% - 35.5% 31

Urology 5.8% 28.8% 28.1% 7.9% 18.7% 10.8% 139

Others 6.3% 43.8% 18.8% - 18.8% 12.5% 16

N/A 12.5% 25.0% 37.5% 12.5% 12.5% - 8

Total(12/194)

6.2%(54/194)

27.8%(47/194)

24.2%(23/194)

11.9%(30/194) 15.5%

(28/194) 14.4%

194/194(100.0%)

ADT type after metastatic diagnosis by department

Number of PSA tests in the first 12 months after starting ADT

STUDY THREE:Patient insights into the

management of metastatic prostate cancer

Why do this research? Paucity of research about metastatic disease

and men's experiences

Variation in pathways for localised disease

Men identified a lack of information particularly about supportive care with localised prostate cancer

Unmet needs remain (3-6yr post diagnosis)

Health system and information Patient care and support Psychological supportive care needs

What was the point?

Study Question: “What are the experiences of men on the metastatic prostate cancer journey?”

Aim: To understand the patient perspective

• Understanding condition• Questions and concerns• Access and use of supportive care

services • The future

What did we do?• Men identified from study two were mailed invitations by

uro-genital specialist nurse (Midland wide)

• In-depth interviews, topic prompts

• Interviewers: Charis Brown and Dr Nina Scott (Māori men)

• Partner involved where available

Analyses

• NVivo 10 (QSR International)

• Thematic analysis undertaken by two researchers

• Review of preliminary themes by wider team

WHAT WE FOUND

Participants  

Maori(n=4)

Non-Maori(n=8)

Age at diagnosis    <70 years 75% 62.5%70+years 25% 37.5%

Year of diagnosis    2009 and 2010 0% 50%2011 and 2012 100% 50%

Key support person    Wife 50% 87.5%

Other family 25% 12.5%Health Professional 25% 0%

ADT    Yes 100% 87.5%No   12.5%

AT DIAGNOSIS

• Understanding the diagnosis• Difficulty in

understanding• Environment

and support

POST DIAGNOSIS

• Understanding the condition• Discussing

treatment• Sourcing

information• Comprehension

of information

CURRENT

• Perception of health state• Unanswered

questions• Self-blame

• Awareness and use of support services• Counselling• Care in the

home• Hospice• Family support

FUTURE

• Awareness of future• The unknown

Topics, themes and sub-themes

Understanding the diagnosis

• I thought I had just hurt my back

• I didn’t really comprehend it – they said I had prostate cancer and I thought I never had prostate cancer… it doesn’t hit you like that

• No, it didn’t sink in at all.

• I saw his mouth open and close but didn’t hear what was coming out…

• …it was the discharge papers from the hospital that had it written on it. I had no idea. …it said that “his ribs, and in his spine” and that’s the only information that we had and I hadn’t really discussed it with [my husband] because I thought …I’ll leave well enough alone.

Understanding next steps

• when I came home I thought, oh well, that’s it, because they didn’t say that you’ll come back for radiation or treatment

• I didn’t know what was going to happen and I still don’t know what’s going to happen...

• …I sort of lost my way a bit.

• I’ve seen a lot of pamphlets out there with diagnosis and what goes on but they don’t tell you the journey. You know the journey from the time you get diagnosed from the doctor – then you go up to the hospital – all that I didn’t know about – you know I just go up for an appointment.

Uncertainty around medication taking

• I got castrated chemically and he didn’t discuss it

• I didn’t know that was a capsule in there when I first got it in there until I went to see [oncologist] and she said, lift your shirt up? What? In there she said. You’ve had a capsule put in.

• I was offered chemotherapy, I have no symptoms, I have no pain, so why make me crook…?

• [the specialist] reckoned I can only be on it [type of ADT] for 18 months and after 18 months they have to stop. Be 18 months this Christmas… All I’ve got is 18 months of injections and what happens after 18 months? I don’t know.

Current Questions

• …I’ve gone from nothing to now 2.97[PSA]... It shot up to there and I don’t know whether that’s good, bad or indifferent

• I’m just scared …[the doctor] said to me that I need a scan

• I don’t know what’s going on!?

• …what the hell’s happening?

• I want to know now and if it’s increasing what’s the reason? I don’t know. Haven’t got a clue…

Fault and Blame

• I don’t listen very well even though I’m a good listener…

• …I didn’t ask the questions correctly, I think. You know that was my fault. I don’t think I was able to understand or comprehend it

• I wouldn’t be able to express myself personally so I think I’m, well, I am the problem.

• There’s been a lot of hiccups along the way.

• It was just a series of little mishaps.

• ...it was probably our fault…

Perceptions of Hospice• My fear was that they wanted me to go into the

Hospice. I knew they had beds there and I wouldn’t get out of the place. I would die there.

• …I was actually horrified when they turned up here cos I thought you had Hospice when you’re dying.

• It’s just that I’ve only ever heard of people going in [to Hospice] as the last resort

• …the question my wife and I were thinking was what is [it] you know? We know what Hospice is, so what does this mean? Do they know something that I don’t know?

Access to Counselling

• Nah, never been offered…

• I really do think that anyone that’s got prostate cancer or anything like that needs counselling.

• I would have done, yes, yes. I would have done.

• Well I should have, I should have just done something about it and I haven’t.

• [Counselling] may have helped us talk a little bit more about it. [My wife] thinks I don’t want to talk about it. It’s not the case.

The Future Unknown

•  It would be good to know that there’s symptoms, that’s going to happen and to look for it. …You’re at home by yourself what then – my hand might be twitching like this and you think is that part of it or what?

• What happens at the end? What am I gonna look forward to? That’s where fear comes.

• …will there be more radiation or is he gonna be just sent home to pass away?

• …Will my bones become soft or crumbly? …those spots are they the right spots?

What does this all mean?

• Low levels of functional health literacy

• Very low levels of critical health literacy

• Need guidelines about process for supportive care referral

• Bridging the gap (by increasing awareness) between health services and community support services.

• Lack of information specific stage four cancer

OVERALL

Overall Summary•11% of men present with metastatic disease p/a

•Only 28% of prostate cancers on the National Cancer Registry are staged

•Variation in ADT treatment and monitoring

•A need to define ‘progression’

•Apparent under-use of chemotherapy

•Lack of guidelines around the management of metastatic disease and the management of hormone refractory disease

•Lack of information tailored to specific stage, level of cancer progression, and medication (including side effects)

•Lack of knowledge and access to supportive care services

The Way Forward•Explore ways of ensuring staging data is routinely supplied to the National Cancer Registry

•Develop National Guidelines for the management of metastatic prostate cancer

•More patients could be presented and reviewed at MDM with medical oncologist

•Improving critical health literacy through health education and communication needs to be a shared goal to improve outcomes

•Consider the involvement of general practitioners in the ongoing monitoring and management of men with advanced prostate cancer to ensure information needs and psychosocial support is in place

THANK YOU