1. Cancer associated chronic illness - a new cancer story
I’m jane maher an oncologist from Mount Vernon Cancer Centre in the UK
Jane Maher
NHS Improvement Lead (cancer)
CMO Macmillan cancer Support
Chair NCSI Consequences of treatment work stream

2. 300,000 new cases of cancer in UK in 20081
Cancer in the UK in 2008
300,000 new cases of cancer in UK in 20081
150,000 cancer deaths in UK in 20081
2 million cancer survivors in UK in 2008
10% 65+ are cancer survivors
increasing by 3.2% each year
1 Based on NCIS data for England in 2005.
All figures refer to all malignant neoplasms excluding non-melanoma skin cancer (ICD-10 C00-C97 excl. C44).

3. Current public (& professions’) view of cancer
Incurable cancer
Cured cancer 3

4. The new “incurable cancer “ story . Multiple courses of Chemotherapy
Chronic phase
Actively managing EOL 4

5. .
Many people with incurable cancer can live good quality lives
Not all will die “soon”, many live with their disease for years
Different “patterns of illness (chronic, progressive, dying)
“incurable cancer “ 5

6. Eg looking at survival curves of a cohort pf patients treated with “palliative” RT …..
Breast/prostate
Lung months
(Other months)
Breast months
Prostate months

7. possible & for as long as possible not always the answer.
“incurable cancer “
Treatment as early as
possible & for as long as possible
not always the answer 7

8. Ovarian cancer (OVO 5) Same Survival :
“early” CT or “wait for symptoms
(Rustin et al 2009)
Overall Survival
HR=0.98 (95%CI=0.80, 1.20), p=0.85
0.00
0.25
0.50
0.75
1.00
Proportion surviving
264
236
203
167
129
103 69 53 38 31 19
Delayed
265
247
211
165
131 94 72 51 22
Early
Number at risk 6 12 18 24 30 36 42 48 54 60
Months since randomisation
Median months (95%CI)
Early (23.0, 27.9)
Delayed (22.8, 30.9)

9. Overall time with a good Quality of life
shorter if CT given early ( Rustin et al 2009) 5 10 15 20 25 30
Number of patients 3 6 9 12 18 21 24
Number of months spent with good GHS score 5 10 15 20 25 30
Number of patients 3 6 9 12 18 21 24
Number of months spent with good GHS score
Median (months)
Early 7.1
Delayed 9.2
p=0.15 (Mann-Whitney test)

10. ? The new “cured cancer” Story . The first year is very tough
More cancer, heart disease
& other chronic illness ?
Life style change
Secondary prevention
New Sorts of
illnesses 10

11. Cured Cancer Lots of people survive cancer.
Cured Cancer
Lots of people survive cancer
At least a quarter- unmet needs from Ca & treatment a year later
New cancer & treatment related illnesses emerge months, years, or decades later
25% unmet needs 6 months
After treatment
Armes et al 2009 11

12. The year after treatment
79% 1850 patients (breast, prostate, gynae, C/R, NHL) questionnaires at EOT & 6 months later (66 centres)
25% unmet needs 6 months after treatment
National Audit Office Report – ‘Tackling Cancer: Improving the Patient Journey’ has attempted to measure progress the governments attempt to tackle cancer through the DoH Cancer Plan through a survey of patients.
2000 patient survey of 65,000 patients with cancer
survey repeated in ,300 (55% of patients approached) participated.
Survey of 4,300 patients
The survey indicates improvements since 2000 but still suggests there are areas needing attention –
40% of patients did not receive written information, and there are variations in the availability of information between types of cancer and geographically, information is not always culturally sensitive,
15% felt they did not have clear answers to their questions or had full understanding for treatment and side effects
older patients (over80 yrs) gave less positive responses
2/3 continued to experience pain at points during their treatment
One in three cancer patients felt so anxious or depressed that they needed help to cope, but 20% of those reported that hospital staff did not do all they could
5 % of all patients needed help with anxiety or depression after discharge but did not receive it
home circumstances were not considered in arranging discharge for 1/5 of cancer patients
40% of patients were not given information about cancer support groups
patients frequently experienced fatigue 1/5 did not receive sufficient help to cope with it
¾ had not been given information about benefits or financial advice
more patients waited more than 30 minutes to see their doctor at follow-up appointments than in 2000, 25% waited more than an hour
Armes et al JCO 2009

13. Cancer survivors - more chronic illnesses Lifestyle change more important for cancer survivors than others
Obesity
Dietary fat intake
Exercise
Smoking

14. UK Health & Well Being survey ( Eliot et al 2010)
Sample (over 30s)
Healthy
N= 4,892
2740
Cancer survivors with or without other chronic conditions
780
Survivors of other chronic conditions but not cancer
1,372
Cancer survivors without other chronic conditions
413
Cancer survivors with other chronic conditions
367
NB: These categories are not all mutually exclusive

15. Selected Health and Well-being outcomes Cancer survivors & CCs versus healthy (odds ratios)

16. New chronic conditions RT & CT related illnesses eg pelvic cancers?
17,000 / year pelvic RT ( UK )
gynaecological, urological, colorectal, anal cancers
100,000 living after pelvic RT
Bowel, urinary ,sexual issues

17. Severe Adverse events : 5 -10% after 10 years; >10% after 20 years
Eifel 1995, Nostrant 1995, Denton 2000, Ooi 2000, Andreyev 2005
Stricture
Fistula/
Perforation
Transfusion dependent bleeding
Secondary cancer

18. Severe Adverse events : 5 -10% after 10 years; >10% after 20 years
Eifel 1995, Nostrant 1995, Denton 2000, Ooi 2000, Andreyev 2005
Stricture
Fistula/
Perforation
Transfusion dependent bleeding
Secondary cancer

19. 25-50% Clusters unexplained changes ; patients don’t tell professionals; neither connect them with useful interventions
“It’s the little things put together that wear us down”
“”my gp says for a long time he did not know what was going on …I thought I was ……maiking a fuss
“My Oncologist asked how I was – how embarrassing to tell him”
Open Letter to my oncologist
Clinical Oncology 2007

20. Months /years after pelvic RT
Symptom Score
bladder symptoms
bowel symptoms
Worse
Better
Time after treatment (months)
Davidson et al 2008

21. Risk stratification - cancer, individual, Treatment Kaiser triangle
Bonn conference

22. Using IT intellegently
GP research database
Patient reported outcomes
Hospital episode statistics
Radiation episode statistics
Chemotherapy prescriptions
Cancer registry 22

23. Getting help after treatment –
What do patients think ?

24. Build one team- words to avoid..
“Primary”
“secondary”
“Discharge”
Perverse incentives

25. Cancer patients……… Cancer patients…
have lots of outpatient appointments
… use a lot of beds
Cancer patients…
…see their GP a lot
… have a lot of tests

26. Economic modeling …. More back to work (first year)
Level of need
Estimated number of patients involved (will vary according to cancer, individual & treatment )
Level 1 – supported self-care with quick access back into the system if and when needed to improve early detection
c75% (<10%)
Level 2 – level of requirement requiring regular primary or secondary care input
c20% (90%)
Level 3 – highly complex patients requiring case management by an assigned key worker (often a CNS) actively managing and “joining up” care for the patient
c5% (<1%)
Red = where we are now
More back to work (first year)
Reduce “empty” follow up (early ca)
Reduce bed days (advanced ca) “

27. Is cancer a long term condition ?
Yes & No ….

28. Some have greatness thrust upon them”
“Some are born great
Some become great
Some have greatness thrust upon them”
Malvolio Twelfth Night W. Shakespeare
Some cancers are born chronic myeloma
Some cancers become chronic breast & prostate
Some survivors have chronic illness
thrust upon them treatment
And some are not chronic at all