Cancer associated chronic illness - a new cancer story Jane Maher NHS Improvement Lead (cancer) CMO Macmillan cancer Support Chair NCSI Consequences of treatment work stream

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

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

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

. “incurable cancer “ 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)

Eg looking at survival curves of a cohort pf patients treated with “palliative” RT ….. Lung 7.5 months (Other 5 months) Breast 22.3 months Prostate 23 months Breast/prostate

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

Overall Survival Ovarian cancer (OVO 5) Same Survival : “early” CT or “wait for symptoms (Rustin et al 2009)

Median (months) Early7.1 Delayed9.2 p=0.15 (Mann-Whitney test) Number of patients Number of months spent with good GHS score Number of patients Number of months spent with good GHS score Overall time with a good Quality of life shorter if CT given early ( Rustin et al 2009)

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

. Cured Cancer 25% unmet needs 6 months After treatment Armes et al 2009 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

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 Armes et al JCO 2009

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

UK Health & Well Being survey ( Eliot et al 2010) NB: These categories are not all mutually exclusive Sample (over 30s) Healthy N= 4, 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

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

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 ?

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

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

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” Open Letter to my oncologist Clinical Oncology “My Oncologist asked how I was – how embarrassing to tell him” “”my gp says for a long time he did not know what was going on …I thought I was ……maiking a fuss

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

conference Risk stratification - cancer, individual, Treatment Kaiser triangle

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

Getting help after treatment – What do patients think ?

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

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

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 Economic modeling …. More back to work (first year) Reduce “empty” follow up (early ca) Reduce bed days (advanced ca) “

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

“ 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