NOVEMBER/DECEMBER 2010

NEW CANCER NGO -

Let’s Talk About Cancer

There is currently no cancer organisation in South Africa focusing
exclusively on awareness, prevention and early detection for all
cancers.
This is about to change with the launch of a new organisation called
Let’s Talk About Cancer. Led by Bev du Toit, they believe that they
can make a significant impact in reducing the number of new diag-
noses through effective campaigns managed by passionate and
informed survivors and volunteers. The message of early detection
will further reduce the cost of treatment and increase the likely sur-
vival rate for patients.
Their focus is on helping people make healthy lifestyle choices, gain
knowledge and understanding of cancer and, learn about early
detection methods and interventions.
To read more about this exciting new cancer-fighting organisa-
tion, go to page 3
Manning the Cancer Support Group stall at the Avon Justine
Walkathon held during October are Samantha Guercio, Bernice

A look at patient Lass and Sikhulile Khupakonke.

satisfaction
Dr M. Bridget Duffy, the chief experience officer at ExperiaHealth,
recently told members of the American College of Osteopathic
Surgeons that surgeons should lead the way in helping hospitals put
a high priority on patient satisfaction.
She said that “As medicine has become higher tech and more
focused on the business side, we’ve forgotten about the importance
of the human connection—the relationship between patients and
their doctors and nurses. Patient experience issues usually fall into
three categories, Dr. Duffy explained.
First is their clinical experience, which refers to patients’ perceptions
of their care—their satisfaction with how they were treated by
physicians, nurses and other health care staff. Did physicians take
the time to thoroughly discuss treatment options? Did nurses readi-
ly respond to patients’ calls for assistance?
The second category is the physical environment, which includes a
clean, temperature-controlled room and good food. Also important
are the patients’ interactions with hospital staff—the people who
deliver food, clean rooms and transport patients.
But the most important satisfaction issue is patients’ emotional and
spiritual needs, Dr. Duffy said.
She cited a conversation with a former patient who told her that he
had decided to seek further treatment at a competing hospital
because even after two open-heart surgeries at the clinic, “no one
asked me what my greatest fear was or what it was like to live with
this condition.”
“Overnight, we changed our admission and check-in procedure at
this clinic,” she continued. “The first question we ask now is, ‘What
are you most concerned about today that you would like to talk to
your doctor or nurse about?’ ”Dr. Duffy said that “This increasing
emphasis on patient experience is happening very quickly, and
there’s a small window of time to be a leader. There’s a lot of good
data out now to justify that patient experience is linked to financial
and clinical outcomes.”
Perhaps South African surgeons and oncologists could take note.

We wish our readers a very happy holiday season

and trust you will drive safely

1
THE VIEW FROM THE OTHER SIDE - and expensive. She smiled weakly and spent a few moments shak-
ing our hands (“Asante sana, Doctor”), and then left. The doctor jot-
The Tanzanian ted a few notes in her chart.
“What did she say?” I asked. “What will happen next?”
ENT Clinic “Oh, she is lucky,” the doctor responded. “She has family near Dar es
Salaam so she will have a place to stay during treatment. In addi-
I don't know what your destiny will be, but one tion, her family has some cows. They will sell two cows and she
thing I do know: the only ones among you who should be able to pay for some treatment. Still, without the cows,
will be really happy are those who have sought they might have trouble in the future.”
and found how to serve. - Albert Schweitzer
I had a hundred questions, but did not know where to start. No
The middle-aged Tanzanian woman lived many hours away and had
matter.We were late and it was time to visit the inpatient ward
traveled to the academic medical center in Moshi. She had now
where we would soon find many more patients with very difficult
waited all day to see the doctor. He would tell her why the neck
problems, grinding poverty, and no easy solutions.
mass was growing and if there was any treatment.
Dr Bruce Campbell is a head and neck cancer surgeon (otolaryngologist) at
My host is a teacher at the Kilimanjaro Christian Medical Centre Froedtert & the Medical College ofWisconsin. Read his blog at
and the only fully trained otolaryngologist in Northern Tanzania. He http://www.froedtert.com/HealthResources/
is one of only six ENT physicians practicing in a country of 40 mil- ReadingRoom/HealthBlogs/Reflections.htm
lion people. He described her predicament. “She has had a growing
neck mass for about one year,” he told me. “Look here! There is also
a mass in her tongue. That is the source of the neck mass, don’t you
agree?” I peered over his shoulder as he focused the dim light from 2011 dates to diarise
his head mirror in the back of her throat. They had taken a piece of 8 January Cancer Support Group, Parktown
the neck mass out at some point and I pointed out the scar in her
neck. “Oh, the report from the biopsy shows that the mass is a can- 5 February Bosom Buddies meeting
cer but the description is unclear.We don’t have a pathologist here 12 February Cancer Support Group, Parktown
very often.” 12 March Cancer Support Group, Parktown
I looked at the two-sentence pathology report that described a type 26 February Bosom Buddies Valentine’s Ball
of cancer that made little sense. Clearly, though, despite the fact 26 March Bosom Buddies meeting
that her diagnosis had been made in a way that was not consistent 9 April Cancer Support Group, Parktown
with our standard of care and the fact that I doubted the diagnosis
7 May Bosom Buddies meeting
on the pathology report, she had an advanced Stage IV cancer of
the throat. Today, she would learn her diagnosis for the first time. 14 May Cancer Support Group, Parktown
28 May Bosom Buddies Pink Pyjama Party
The Tanzanian doctor finished up his brief examination and then
spent five minutes discussing her diagnosis and options in Kiswahili. 11 June Cancer Support Group, Parktown
I am quite certain that he shared that her cancer was best treated 11 June Bosom Buddies 6th birthday bash
with radiation therapy. 9 July Cancer Support Group, Parktown
I watched as they talked. Back home in the US, she would have been 30 July Bosom Buddies meeting
seen immediately by a medical oncologist and radiation oncologist 13 August Cancer Support Group, Parktown
and be scheduled for treatment. In Tanzania, though, the only radia-
14 August Bosom Buddies Spinathon / Boxathon
tion therapy was located in
Dar es Salaam, 350 difficult 3 September Bosom Buddies Mad Hatters Tea Party
miles away. Chemotherapy 10 September Bosom Buddies meeting
is rarely available. In addi- 1 October Bosom Buddies meeting
tion to the difficulty get-
26 November Bosom Buddies year end function
ting to treatment, most
Tanzanians must pay at USEFUL CONTACT DETAILS :
least 50 percent of the cost People Living With Cancer, Johannesburg: 073 975 1452,
of any medical care. As a plwc@icon.co.za
result, most people put off
Bosom Buddies: 0860 283 343, www.bosombuddies.org.za
seeing a doctor for as long
as possible and most can- Campaign for Cancer: www.campaign4cancer.co.za
cers present very advanced. CANSA Johannesburg Central: 011 648 0990, 19 St John Road,
Houghton, www.cansa.org.za
The discussion between the
Tanzanian doctor and the Reach for Recovery: Johannesburg, Antoinette 011 648 0990
patient was remarkably or 072 849 2901
brief and I surmised that Reach for Recovery: Harare, Zimbabwe contact 707659.
the doctor told her that she Cancer Centre - Harare: 60 Livingstone Avenue, Harare
had cancer and that the Tel: 707673 / 705522 / 707444 Fax: 732676 E-mail:
only option for treatment cancer@mweb.co.zw www.cancerhre.co.zw
would be both far away
2
Let’s talk about cancer ...
Let’s Talk About Cancer believes that not enough is being done to
address the awareness, prevention and early detection of cancer in
South Africa and that we can make a difference through pro-
grammes run by cancer survivors and volunteers.
Our programme, “Let’s Talk About Cancer” (LTAC), will ensure that our
army of survivors and volunteers will be trained to impart one consis-
tent message to communities across South Africa.We trust that we
will be able to encourage South Africans to make behaviour changes
that will significantly reduce the impact of cancer on us all. Our pro-
grammes will be carefully monitored with activity reporting to ensure
that our reach and impact can be accurately fed back to sponsors.
We also aim to become the centre of excellence for cancer, with
well researched and topical information available on our website.
The sheer size of the cancer issue requires that all role players work
together to make an impact.We aim to unite and collaborate with
cancer organisations both in South Africa and abroad, and we
believe that ultimately we can stem the tide.
LIVESTRONG announced in 2009 that in 2010 cancer would kill
more people than HIV/AIDS, TB and malaria combined.
A pre-emptive intervention to address the increasing incidence of
cancer and spiraling costs of cancer treatment as highlighted by the
Lance Armstrong summit 2009.
LIVESTRONG released the landmark Economic Impact Report,
which estimated the total global economic burden of new cancer
cases at $305 billion in 2009.
According to the American Cancer Society Report “Cancer carries
the Highest Economic Impact Globally among all Diseases” dated
17 September 2010 – “The current best estimates suggest that can-
cer now costs the global economy nearly a trillion dollars each and
every year”.
Cancer survivors themselves need support and motivation as they
face a number of ongoing emotional and physical issues once treat-
ment is complete, and this model will provide them with a commu-
nity of fellow survivors with whom they can interact.
Many cancer survivors feel the need to “give back” and contribute to
the cancer community, but many don’t know how to get involved.
LTAC gives survivors the opportunity to get involved to the extent
that they choose.
What services will LTAC offer and how will this happen?
❐ We will run the following programmes in the community:
Cancer Awareness
Preventative awareness
Debunking cancer myths
Anti-stigma awareness
Early detection awareness.
❐ We will develop an effective and well researched campaign on
cancer awareness, prevention and early detection.
❐ We will recruit cancer survivors and volunteers and train them
to carry a consistent message which is tailored to the communi-
ty they are addressing.
❐ Together we will create and manage an intensive and effective
cancer awareness and education campaign in schools, corpo-
rates, communities, churches and institutions.
❐ The survivors and volunteers will be the face and voice of the
3
by Bev du Toit
campaign and will feel part of the
campaign at all times.
❐ We will supply survivors with training
and training material, brochures and web-
site information to ensure dissemination of rel-
evant and factual material.
❐ To create a synergistic cancer network (cancer NPO’s, survivors,
government, pharmaceutical companies and other interested
parties).
❐ To create a technology-based solution that will enable us to
track and monitor all activities (financial and educational) .
❐ We will develop a cancer library that is a fact-based resource
available to anyone free of charge.
If you are interested in getting involved, contact Bev du Toit at:
bev@talkaboutcancer.org.za or on 073235 1571
RECIPE OF THE MONTH
Almond Fig Bars
Satisfy your sweet tooth with a healthier dessert bar. Featuring figs,
whole-wheat flour and toasted almonds, this recipe brings health and
hearty flavour to the table in about 30 minutes. Almonds are rich in
omega-3 fatty acids and a growing body of research shows that they
may protect against heart disease, cancer and help with weight con-
trol. Naturally sweet fig and unsweetened applesauce are a great alter-
native to processed sugar and helps keep the calories in check without
sacrificing taste. Make these warm bars this season for a cosy respite
from the cooler weather.
Canola oil spray
3/4 cup whole-wheat flour
1/2 tsp. baking powder
1/4 tsp. baking soda
1/4 tsp. salt
1 large egg
1/4 cup honey
1/4 cup unsweetened applesauce
2 Tbsp canola oil
1 tsp. almond extract
1 tsp. orange zest
2/3 cup chopped dried figs
1/3 cup chopped toasted almonds
Preheat the oven to 350 degrees. Lightly coat an 8-inch square bak-
ing pan with canola oil spray.
In a large bowl, mix together the flour, baking powder, baking soda
and salt. Set aside.
In a medium bowl, stir together the egg, honey, applesauce, canola
oil, almond extract and orange zest. Gently stir the wet ingredients
into the dry ingredients until mixed. Stir in the figs and toasted
almonds. Spread the mixture into the prepared pan.
Bake about 25 minutes, until a tester inserted in the center comes out
clean. Cool the bars in the pan on a wire rack. Cut into sixteen 2-inch
squares. Store in a tightly covered container for two to three days.
 News from
around the world
Radiation before surgery may stop
colorectal cancer from returning
Patients with cancer found at the end of the large intestine called
the rectum who receive one week of radiation therapy before sur-
gery have a significant reduction in the chance that their cancer will
return after 10 years, according to a study presented at Annual
Meeting of the American Society for Radiation Oncology (ASTRO).
“We believe that this short course of radiation will open a new win-
dow of opportunities in the treatment of rectal cancer,” said Corrie
Marijnen M.D., lead author of the study and a radiation oncologist
at the Leiden University Medical Center, in Leiden, Netherlands.
Findings show that patients who underwent radiation before sur-
gery had a significant decrease (6 percent) in their chances of local
recurrence after 10 years of treatment, compared to those who had
did not have radiation (11 percent).
Cancer coming back to its original tumour site and surrounding
area, called a local recurrence, is a major problem in the treatment
of rectal cancer patients. The mesorectum is the fatty tissue near
the rectum that contains blood vessels and lymph nodes. When rec-
tal cancer recurs, it is often in these lymph nodes. Therefore, a better
surgical technique called total mesorectal excision (TME) was intro-
duced worldwide. It removes the entire mesorectum and lymph
nodes and is most successful when all of the tumour and surround-
ing area is removed and no cancer cells remain. In this study, it was
demonstrated that preoperative radiotherapy is still beneficial in
these optimally operated patients.
Article URL:
http://www.medicalnewstoday.com/articles/205728.php
Adult survivors of childhood cancer at risk
According to a report from the Childhood Cancer Survivor Study in
the US, many survivors of childhood cancer who received treatment
Cancer Coping Kit
The multi-lingual Cancer Coping Kit helps cancer patients cope
with their journey to recovery, thanks to a grant from the
National Lottery Distribution Trust Fund (NLDTF).
The Cancer Coping Kit is available in English, Afrikaans, isiZulu
and seSotho. It provides knowledge and understanding for peo-
ple diagnosed with cancer. The kit also provides family members
and caregivers with information and coping techniques. Patients
or caregivers can obtain the kit from:
Bev du Toit: 073 235 1571
People Living With Cancer: 073 975 1452
The Breast Health Foundation: 076 479 0400
CANSA: 011 648 2340
4
Founded in 1997 by cancer survivor and champion cyclist
Lance Armstrong and based in Austin, Texas,
LIVESSTRONG fights for the 28 million people around the world
living with cancer today.
OUR MISSION: TO INSPIRE AND EMPOWER PEOPLE AFFECT-
ED BY CANCER
OUR MANTRA: UNITY IS STRENGTH. KNOWLEDGE IS
POWER. ATTITUDE IS EVERYTHING.
LIVESSTRONG connects individuals to the support they need,
leverages funding and resources to spur innovation and
engages communities and leaders to drive social change. For
more information, visit LIVESSTRONG.org.
that increases their risk of secondary breast, colorectal, and skin
cancer do not follow the recommended screening guidelines.
Adults who underwent radiotherapy for paediatric cancer may be at
high risk for secondary breast, colorectal, and skin cancer, depending
on the treatment site and the radiation dose they received. If a sec-
ondary cancer develops, these patients, as well as those treated
with intensive chemotherapy, may have limited treatment options
because of their previous regimens. Thus, early detection of second-
ary cancers is especially important for these patients.
The findings of the Study suggest that interventions to improve
adherence to screening guidelines should be aimed not only at the
survivors but also at the primary care physicians who provide their
care as adults. Such interventions for physicians include education,
open access to guidelines, and use of paediatric cancer centres as a
resource. It is especially important that after treatment is complet-
ed, survivors receive a summary of their cancer treatment and a
care plan. In fact, in the current study, high-risk survivors who had a
treatment summary were more likely to follow recommended col-
orectal and skin cancer guidelines.
http://www.oncologystat.com/journals/journal_scans/Screening_an
d_Surveillance_for_Second_Malignant_Neoplasms_in_Adult_Survivo
rs_of_Childhood_Cancer_A_Report_From_the_Childhood_Cancer_Su
rvivor_Study.html
Low-dose aspirin may cut risk of develop-
ing and dying from colon cancer
A pooled analysis of five trials with 20 years of follow up suggests
that taking a low dose of aspirin may cut the risk of developing and
dying from colon cancer, the second most common cancer in devel-
oped countries after lung cancer. The researchers found that it
reduced the incidence of colon cancer by 24 per cent and deaths by
35 per cent.
Peter Rothwell, Professor of Clinical Neurology at the University of
Oxford, and also of Oxford’s John Radcliffe hospital, both in the UK,
and colleagues, presented the findings of their analysis in the 22
October issue of The Lancet.
They then pooled individual patient data and analysed the effect of
doses of at least 75 mg daily of aspirin on risk of colorectal cancer
over 20 years during and after the trials.
The authors concluded that:“Aspirin taken for several years at doses
of at least 75 mg daily reduced long-term incidence and mortality
Cancer Support Group
due to colorectal cancer. Benefit was greatest for cancers of the December 11
proximal colon, which are not otherwise prevented effectively by
screening with sigmoidoscopy or colonoscopy.
Meetings will be held on the second
This news is likely to have a mixed reception. Some doctors may be
Saturday of each month in 2011
reluctant to promote the aspirin route as a way to prevent colon commencing January 8
cancer because of the associated risks, while others may be attract-
ed by the relatively cheap alternative that the drug offers, especially 9h00 for 9h30
if they sympathise with patients who wish to avoid the discomfort
and embarrassment of invasive tests. at 18 Eton Road, Parktown
In an accompanying editorial, Drs Robert Benamouzig and Bernard (opposite WDGMC main entrance)
Uzzan, of Avicenne Hospital in Bobigny, France, said the study had Enquiries:
limitations in that cancer was not the primary outcome studied in
the trials, and there was not enough data on aspirin-related deaths. Bernice Lass, WDCMG, (011) 356 6148
Also, the patients were mostly men with cardiovascular risks, so the Chris Olivier, PLWC 083 640 4949
findings can’t be generalised to other populations like women and
people without those risks.
All patients and caregivers are welcome
Article URL:
http://www.medicalnewstoday.com/articles/205530.php No charge is made
Warning: harm reduction cigarettes can be regardless of whether the cigarette brand was harm reduction or
conventional.
more harmful than conventional brands
Harm reduction cigarettes are made using complex filters or by
To reduce the toxicity of cigarette smoke, tobacco companies have
genetically altering tobacco plants to reduce nicotine concentration.
introduced “harm reduction cigarettes,” often marketed as safer
than conventional brands. But stem cell scientists at the University Article URL:
of California, Riverside have found that even sidestream smoke http://www.medicalnewstoday.com/articles/205405.php
(which burns off the tip of a cigarette) from harm reduction ciga-
rettes impairs growth of human embryonic stem cells more than Anticoagulants may cut the risk of
sidestream smoke from a conventional brand.
prostate cancer death
Tobacco smoke is comprised of both mainstream smoke and side-
At a press briefing prior to the annual meeting of the American
stream smoke. The latter is the major component of secondhand
Society for Radiation Oncology, Dr. Kevin Choe, said that anticoagu-
smoke, also called environmental tobacco smoke, and is inhaled by
lants, and especially aspirin, could cut the risk of dying of prostate
passive smokers.
cancer by almost 50% for men diagnosed with localised disease.
According to Prue Talbot, the director of UC Riverside’s Stem Cell
“Evidence has shown that anticoagulants may interfere with cancer
Center and the research team leader. “Our analyses show there is
growth and spread,” said Dr. Choe, a radiation oncologist at the
significant toxicity in harm reduction products, and our data show
University of Texas at Dallas. “If the major effect of anticoagulants is
that reduction of carcinogens in harm reduction mainstream smoke
preventing metastasis, this may be why previous clinical trials with
does not necessarily reduce the toxicity of unfiltered sidestream
anticoagulation medications produced mixed results, since most
smoke.”
patients in these trials already had metastasis. If the cancer had
Because it is not possible to directly determine chemical toxicity on already metastasised, then anticoagulants may not be as beneficial.”
actual human embryos, the researchers developed tests with human
The mechanistic relationship between metastatic disease and anti-
embryonic stem cells, which model young embryos, to measure and
coagulants remains unclear, Dr. Choe said. However, in vitro and in
compare the toxicity of mainstream (smoke actively inhaled by
vivo experiments suggest that normal platelet aggregation may
smokers) and sidestream smoke from both conventional and harm
protect circulating tumour cells. “Once the cells break away from
reduction cigarette brands.
the original site into the bloodstream, they are coated by platelets
“Embryonic stem cells provide the best model currently available for that prevent immune cells from attacking and seem to aid the
evaluating the effects of environmental toxicants on prenatal stages tumour cells in sticking somewhere and beginning to grow,” Dr.
of development, which are usually the most sensitive to chemical Choe said. “Any interference with this clotting function might
stress,” said Talbot, a professor of cell biology and neuroscience. decrease the protective effect of platelets.”
Her group also found that sidestream smoke was consistently more “There are risks associated with anticoagulants, and in fact they can
potent to the embryonic stem cells than mainstream smoke, increase the risk of bleeding from the rectal wall during prostate
5
cancer treatment,” he said. “Further studies are necessary before the
addition of aspirin to prostate cancer therapy could become a stan-
dard treatment.”
According to Dr Choe, the researchers found that among those on
anticoagulants:
The risk of dying from prostate cancer at 10 years went down from
10% to 4%
Their risk of developing bone metastasis was significantly reduced
Those with high-risk prostate cancer benefited the most. As treat-
ment options for patients with high-risk cancer are limited, the
authors say this is great news.
Aspirin offered greater benefits than the other anticoagulants
However, he added, “for those who are already taking an anticoagu-
lant for some other reason, we might expect to see an additional
benefit in prostate cancer.”
http://www.oncologystat.com/news/Anticoagulants_Especially_Asp
irin_Seem_to_Cut_the_Risk_of_Prostate_Cancer_Death_US.html
Chemotherapy + palliative care = a new
equation for cancer management
The benefits of incorporating palliative care into standard cancer
therapy have been the subject of numerous articles and commen-
taries since the recent publication of a study by Temel and col-
leagues in The New England Journal of Medicine. The study showed
that palliative care combined with standard chemotherapy
improved quality of life and increased survival in metastatic lung
cancer patients - findings that underscore that palliative care is not
solely an end-of-life option but rather an effective cancer-manage-
ment strategy.
Dr Temel was asked whether she and her colleagues surprised by
this finding?
She answered: “One of the things I think is very funny is that all of
the palliative-care doctors say that they were not surprised at all,
and all of the oncologists say that they were very surprised.”
The provocative study left a number of questions unanswered, such
as the specific palliative-care interventions responsible for the posi-
tive results and whether these results can be replicated by other
studies. An interview with Dr. Jennifer Temel, the study author,
addresses these issues and can be found on the Medscape website.
When doctors talk, patients don’t
always hear
According to Elizabeth Cooney of the Boston Globe, recent research
suggests that what doctors explain and what patients understand
might be two very different things.
The doctor says: You have cancer, but we’re not sure whether it’s the
kind that will spread. So you’ll have to weigh the risks and benefits
of treating it versus waiting to see whether it gets worse.
The patient hears: You have cancer. We can take it out.
DISCLAIMER: This newsletter is for information purposes only and
is not intended to replace the advice of a medical professional.
Please consult your doctor for personal medical advice before
taking any action that may impact on your health.
6
WHAT A GOOD IDEA !
Let patients call the shots
!
Palo Alto Medical Foundation created theira Patient-Driven Cancer
Patient Advisory Council – to engage, empower, inform – doctors,
patients and caregivers – four years ago to help empower patients
to be part of their own cancer care team and integrate the care
plan across all physicians caring for them.
The original Cancer Patient Advisory Council helped develop stan-
dards for supporting cancer survivors while they are transitioning
into different phases of life – and helped let patients and families
know their concerns would be listened to, and long-term stability
and support would be available to them at all stages of their jour-
ney.
Today, their cancer care program is called “Focus on Living,” and
the function of the Council has evolved to include many other
areas of information sharing, education, program development –
and outreach and collaboration with other community groups.
They wanted to find out patients’ perspective on improving cancer
care. Instead of asking them after the fact, they wanted them to
bring their ideas to the committee on a regular basis. The patients
are active on the committee and help them set up their ideas of
what they’re now doing in the cancer care clinic – and continue to
improve and refine, based on their needs and wishes.
Three members of the Committee are staff, the rest are patients.
They make their recommendations and give feedback and get it
done!
As the chairperson of their Council says, “We continually survey
our cancer care patients and run ideas past them, so we can adjust
if needed. It’s an important function of the advisory committee –
to get primary input from the patients. That is always first in
mind.”
More info: PAMF: www.pamf.org
Ideally, patients should talk with their doctors about the pros and
cons of a particular treatment, weighing the risks and benefits,
exploring alternatives — including doing nothing — and then come
to a conclusion. That’s the goal of the informed consent process,
best known by the paperwork patients sign at the end saying they
heard doctors describe what they may be getting into.
One study found that heart patients believed stents would prevent
heart attacks and death when research tells us — and their cardiol-
ogists told them — that the tubes that open clogged coronary
arteries can only relieve chest pain. Another study, based on a
national survey, concluded that people considering serious decisions
about knee replacements, prostate cancer tests, and long-term use
of medications such as cholesterol-lowering statins did not hold a
balanced picture of the consequences of their choices.
Well-known blogger, Dave deBronkart (e.patient Dave) says:
“My advice is, first of all, it’s increasingly wise for patients and fami-
lies to take an active role in learning what they can about treatment
options, and realise we’re all prone to wishful thinking,’’ he said. “It’s
smart to have somebody else check your work. Partner with your
physician. Ask lots of questions. Call back, and ask more,’’
One patient may not think getting a stent is worth the risk if it
doesn’t prevent a heart attack. Someone else taking the blood thin-
ner Warfarin may be worried more about the side effect of bleeding
than the risk of a blood clot.
http://www.boston.com/news/health/articles/2010/09/20/what_d
octors_say_is_often_not_what_patients_hear/?page=full
Proving innovation
In an article in the New York Times, entitled “Proving Innovation”,
David Leonhardt comments on the US Medicare programme and
speaks of a controversial idea to save millions of dollars:
In the new issue of the journal Health Affairs, two doctors, both for-
mer Medicare officials, have laid out a plan to do so. It would give
expensive new treatments three years to prove that they worked
better than cheaper treatments, or their reimbursement rates would
be cut to that of the cheaper treatments.
The treatment of prostate cancer offers a good example of the
trouble with the current system he says. The options for treating
prostate cancer include three forms of radiation. One of them,
three-dimensional radiation, costs Medicare about $10,000.
Another treatment, a targeted form of radiation known as IMRT,
came along a decade ago and initially cost about $42,000. Lately,
Medicare has also started covering a third, proton radiation therapy,
for which it pays $50,000.
No solid research has shown IMRT to be more effective at keeping
people alive, with minimum side effects, than three-dimensional
radiation. The backing for proton therapy is weaker yet. As Dr.
Pearson says, “There is even less evidence on whether proton thera-
py is as good as other alternatives than there was for IMRT when it
was the new kid on the block.”
http://www.nytimes.com/2010/10/20/business/economy/20leonha
rdt.html?_r=3&ref=health&pagewanted=print
Are hospitals safe havens?
When sick people have to go to a hospital, they assume they will
get the best care possible and not be harmed. A new US study
suggests, however, that far too often patients are put at risk and
this could be the case in South Africa too.
Here are some of their suggestions for protecting loved ones if
they have to be hospitalised:
❐ Have an advocate with the patient at all times. That needs to
be a person who is willing to ask tough questions and be
assertive if something seems amiss.
❐ Ask about all medications. Make sure the patient receives the
three R’s: right drug, right dose, right time.
❐ Inquire about drug interactions. Most US hospitals have com-
puterised alert systems. Ask if there are any warnings about
the combination the patient is receiving.
❐ When leaving the hospital, get detailed discharge instructions
about post-hospital care, diet and exercise. Find out what
symptoms might be worrisome, and ask for a number to call
if anything goes wrong.
Until hospitals become safer, families need to be alert to protect
their loved ones.
7
Did you put ICE on
your phone?
A global campaign, started in the UK in 2005, has spread world-
wide, calling for individuals to programme an In Case of
Emergency contact (or ICE for short) into their mobile phones.
Most emergency personnel are trained to look for an ICE con-
tact. They are focused on the patient, and so wouldn’t be able to
spend a whole lot of time browsing for information on a phone.
Choose a responsible person or people to be your In Case of
Emergency (ICE) contact. List their contact information under
ICE - and you can also stipulate their relationship, eg ICE brother.
Then let your ICE contacts know that you have chosen them as
your designated contacts.
The trick here is to put your “ICE” information into your cell in as
big and obvious a way as possible. After all, emergency workers
are busy trying to save you and can’t be spending precious
moments looking through all your contacts.
ICE information is especially important for children because in
many cases, emergency rooms can’t treat a child without con-
sent from parents. If someone’s sprained an ankle or something
else that’s not life-threatening, they can’t even give pain medica-
tion until they get permission from the parents.
There is one problem with all these options: If you password-pro-
tect your phone, emergency workers can’t find any of this
because your phone will be locked.
You can also put your medical information on your cell. If you
have a particular medical condition or are taking certain drugs,
emergency workers need to know. You can put that information
in the same place as your ICE contact, or you can also get an app
that stores it. Choose an app that puts the information (or an
icon leading to it) on the front screen of your phone so it’s easy
to find. Jared makes one for your BlackBerry and Polka makes one
that goes on the front screen of your iPhone, which will work
even if your phone is locked.
iPads entertain chemo patients
Recognising that patients can spend hours in the clinic for treat-
ment and tests, Dana-Farber Cancer Institute has started lending
iPads to chemotherapy patients to help them pass the time.
The portable Apple computers are available to sign out for a three-
hour period at no charge; all that is needed is a patient identifica-
tion card and driver's license. They are pre-loaded with games like
chess and Sudoku, movies, and a full library of music, as well as
videos and information about cancer care at the Institute. The iPads
also includes many popular news and entertainment apps.
"Many patients here at the Institute have to spend a great deal of
their day with us in infusion chairs, with limited mobility," says
Janet Porter, PhD, Dana Farber's chief operating officer. "We have
televisions and reading material already available, but this is an
extra way to help entertain them and pass the time."
The iPads work well because they are easy to use, have long battery
life, and are quick and intuitive. They are also easier to keep disinfec-
ted than a laptop, according to Steven R. Singer, senior vice presi-
dent for Communications at Dana-Farber.
MAYO CLINIC’S BLOG
LIVING WITH CANCER
by Sheryl Ness
Pets improve quality of life
Your best friend, companion and greatest listener might be the one
who snuggles up with you during a nap, can’t wait to take a walk in
the afternoon, and gives you big sloppy kisses or purrs when you let
them know how much you love them. For those of you who have a
pet, you know what I’m talking about.
Research has shown time and again that there are positive benefits
to having a pet in the home when you’re going through a health cri-
sis or dealing with a chronic disease. The positive benefits are true
for all age groups, from young children through adults.
Some of the benefits include: decreased level of anxiety and despair,
increased feelings of well being, increased social functioning, and
increased mental capabilities. In other words, having a pet present
can really make a difference in your daily quality of life.
They are a source of comfort and unconditional love; they require
nurturing and attention (which takes the focus off of you and on to
them for a while). Having a pet can also give you a sense of safety
and security. A true companion at any time you might need it!
Using humour to help the healing
Humor can heal the soul, it’s true.
Many of you writing on the blog are using humour to deal with the
reality of cancer. It seems like it’s worth talking about, because
research has shown that humor and laughter can reduce stress, con-
trol pain, improve our immune system and promote healing.
When you laugh, it increases oxygen flow and circulation, lowers
blood pressure and just makes you feel better. Think back to the last
time you had a good laugh; how did you feel? Free from stress,
happy, light-hearted and relaxed are a few feelings that come to
mind. Laughter can give you a sense of release of emotions and can
be a great distraction from a situation that is heavy and challenging.
Here’s a list of ways to incorporate moments of humor into daily
life. See what you think. And, please feel free to add to this list.
Watch a funny movie and laugh out loud.
Laugh with friends — go for coffee together, talk a walk, go window
shopping.
Take time to read the comic section of the paper every day.
Play games such as Pictionary, Bingo, Charades, Bowling ... anything
that puts you in a situation of humor and fun.
Having cancer isn’t funny; it’s a serious and life-changing event.
However, it might be worth a try to incorporate a little humor into
your daily life.
Tips for handling cancer stigma
Many of you who have written to this blog over the past few
months are dealing with the cancer stigma, the negative aspects
of a cancer diagnosis. Some words that you have used are "isolat-
ed," "lonely," "shunned," "weary" and "abandoned."
Some of you have mentioned losing the support of family, friends
and co-workers during the experience. It seems that we are at a
critical point in time between the days when the word "cancer"
8
was not used in everyday conversation, to a future day when the
word is followed by support, love and care. I have hope that with
additional education, science and technology; the cancer stigma
will be no more.
Some ideas that might help you as you talk with others and deal
with the aspects of a diagnosis of cancer.
❐ As you choose to share information with others; give them the
facts and then let them know what might help you at the
moment. For example, you might say: "I was just diagnosed
with stage II breast cancer and will be having surgery next
week. What would really help me is if you could do my gro-
cery shopping for me for a few weeks while I recover."
❐ Keep doing the things you love to do. For example, an exer-
cise routine (modified if needed), relaxing hobbies and time
with friends. The more you are open to others, the more sup-
port you will find.
❐ Seek out support and resources for your cancer type. This
could be through a support group, online blog or other
resource. Surround yourself with positive people.
❐ Be well informed. Ask questions about your treatment, side
effects, long term effects and prognosis. Be honest with those
around you if they have questions. It is usually a good idea to
give information to those who love you. In this manner, they
can know what to expect and how to give you support along
the way.
Today, there are so many ways to communicate news and
progress between family and friends. Social media tools such as
Caring Bridge, blogs (such as mine), and online support groups
are also helpful. Please feel free to share your thoughts on how to
positively deal with the stigma of cancer.
Sheryl Ness, R.N., O.C.N., is a nurse educator for the Cancer
Education Program at Mayo Clinic in Rochester, Minn. She helps
inform patients, families and caregivers about services and
resources to help them through the cancer journey.
She has a master's degree in nursing from Augsburg College. In
addition, she is an assistant professor of oncology at the College of
Medicine, Mayo Clinic, and is certified as a specialist in oncology
nursing. Sheryl has worked for more than 20 years at Mayo Clinic as
an educator. She has a keen interest in the importance of the quali-
ty of life and concerns of people living with cancer.
http://www.mayoclinic.com/health/living-with-cancer-
blog/MY00850
LETTER -
Statistics and Hope
I know others have made this point - but I just want to echo -
five years ago, there were virtually no treatments for stage 4
RCC.
Today there are six approved drugs with more in the pipeline.
Statistics can't keep up with the research - so why bother keep-
ing up with statistics : ) .
Before my husband was diagnosed with cancer, I knew the defi-
nition of hope, but cancer changed that understanding for me.
Now, hope isn't just a word, it's a lifestyle.
- Dena
Ovarian cancer drug hope
Ovarian cancer remains the leading cause of death in women with
gynaecological malignancies over the world.
Drug resistance is a major obstacle in curing ovarian cancer but new
research from the Centenary Institute has discovered a treatment
that kills ovarian cancer cells in a new way that can break the resist-
ance mechanism. Published today in Autophagy, the researchers
found the drug (FTY720) had a potent effect in human ovarian can-
cer cells, even in those resistant to cisplatin, the most commonly
used chemotherapeutic drug currently available for the treatment
of ovarian cancer.
Centenary Institute Signal Transduction Head Associate Professor Pu
Xia described the findings as a breakthrough in ovarian cancer treat-
ment because, FTY720 kills ovarian cancer cells through a unique
way different to the current anti-cancer drugs. Current treatments,
such as cisplatin, kill ovarian cancer cells through a way of program-
ming cell death known as apoptosis but this is often reversible or
demolished by cancer cells. However, FTY720 kills cells through an
irreversible process known as necrosis so the cancer cells cannot
resist, repair and relapse.
While this research is a major first step toward developing a more
effective treatment for ovarian cancer, the researchers claim more
pre-clinical and clinical trials are needed before the drug might be
used in women with ovarian cancer.
This drug has been approved by the US Food and Drug Administration
(FDA) for use in the treatment of multiple sclerosis and is also used in
multiple clinical trials for the prevention of organ transplant rejection
and the treatment of various autoimmune diseasesand has also shown
anti-tumour efficacy in several other types of cancers but this is the
first time it has been studied for the treatment of ovarian cancer.
Source: Centenary Institute
Breast cancer breakthrough
As a cancerous tumour develops, it quickly outgrows its existing
blood supply. So a protein called Hypoxia Inducible Factor (HIF) is
released that sends out signals causing surrounding normal tissues
to grow new blood vessels into the tumour - and that provides the
cancer with oxygen and nutrients. This plays a critical role in the
development and spread of breast and other cancers. But now
comes word from University of Southampton researchers in the
United Kingdom that they've discovered something which inter-
feres with and actually "turns off" the ability of HIF to function - a
natural plant compound dubbed phenyl ethyl isothiocyanate
(PEITC) found in the herb watercress.
"This research takes an important step towards understanding the
potential health benefits of this crop since it shows that eating
watercress may interfere with a pathway that has already been
tightly linked to cancer development," molecular oncologist
Professor Packham, who headed the two year study, said in a state-
ment to the media. "Knowing the risk factors for cancer is a key goal
and studies on diet are an important part of this."
Working with Barbara Parry, Senior Research Dietician at the
Winchester and Andover Breast Unit, Professor Packham performed
a study involving a group of breast cancer survivors who underwent
a period of fasting. Then the research subjects ate 80g of watercress
(about the equivalent of a cereal bowl full of the herb). Next, a
series of blood samples were taken over the next 24 hours. The
blood tests revealed significant levels of the plant compound PEITC
9
in the blood of the participants following the watercress meal. But,
most importantly, the tests showed that the function of the protein
HIF was also measurably affected and "turned off" in the blood cells
of the women who had eaten the watercress. The results of this
research, which were just published in the British Journal of
Nutrition and Biochemical Pharmacology, provide new insight and
hope that simply eating watercress regularly may protect against
and perhaps help treat cancer.
"This is not a cure for cancer but it may well help to prevent the dis-
ease," said Professor Packham. "We carried out this study with a
handful of breast cancer survivors but it has the potential to have
the same effect with other cancers too."
For more information:
http://www.ncbi.nlm.nih.gov/pubmed/20546646
Depression associated with
reduced cancer survival
New Australian research has found that psychological factors may
have a significant impact on the survival of people with cancer.
The Australasian Gastro Intestinal Trials Group study, presented yes-
terday (9/11) at the Clinical Oncological Society of Australia Annual
Scientific Meeting in Melbourne, researched 421 patients with
bowel cancer.
The study measured survival rates against psychological factors,
including hope, optimism, depression and anxiety, while controlling
for other biomedical variables. It found there was a significant
decrease in survival times for those with depression.
Peter MacCallum Cancer Centre Associate Professor, Penelope
Schofield, said the research suggested psychological factors played a
potentially significant role in health related behaviours.
"It is likely that feeling either depressed or hopeful impacts a cancer
patient's behaviours, with those high in hope more likely to seek
information, second opinions, different treatment options and take
better care of themselves than those who are depressed or anxious
and feel they have no control over their illness," she said.
"This research highlights the importance of empowering cancer
patients to be able make choices about their treatment and provid-
ing emotional support throughout their cancer journey," she said.
The study did not find a relationship between optimistic thinking
(simply believing there will be a good outcome) and survival.
COSA President, Professor Bruce Mann, recommended health pro-
fessionals encourage their patients to ask questions and become
more involved in decision making around their treatment.
"This research also highlights the importance of health professionals
being aware of signs of anxiety or depression and helping patients
who exhibited symptoms get a proper diagnosis and appropriate
treatment."
Source: Cancer Council Australia
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