2015 vision july newsletter

VISION, JULY 2015

UJ and CanAssist celebrate 2015 Mandela Day On Friday 19 July an enthusiastic bunch of some 40 students from the University of Johannesburg descended on the kitchens of the Charlotte Maxeke Johannesburg Academic Hospital and prepared to honour Mandela Day. They joined the CanAssist Support Team from CanSurvive and the Hospital staff to prepare and serve huge quantities of vegetable soup and bread which they distributed to nearly 500 patients in the chemo, radiation and breast clinics of the hospital.

Lead by CanSurvive’s Susan Elder, assisted by her husband Robert and Zama Mabuza, students and helpers donned plastic aprons and hair nets to make the delicious and healthy soup before leading a procession of helpers through “The Tunnel” in the bowels of the Hospital to the Clinics. There, patients waiting for treatment were served by the enthusiastic students.

A number of helpers from the Hospital - photographers Israel and Thulani, and PRO Lungiswa - joined UJ staff Nicolette and Andy and the students in transporting the steaming soup to the various clinics where they were greeted with joy by the patients who endure long waits for their treatment.

After Bongi, one of the radiologists explained that they were there to celebrate Mandela Day, the nursing sisters and the patients sang as the students handed out the soup and bread.

Zama and his team transporting the huge pots of soup.

The students were marvellous and it was an eye opener for them to witness the treatment for cancer - and the effect it has on the patients.

Thanks to UJ for supplying the fresh vegetables and their support; to the hospital staff, and to everyone else who helped to make this a wonderful, memorable Mandela Day celebration.

CanAssist hope to extend their support to cancer patients substantially with the help of UJ and its students.

More pics on page 3.

The final date - 6 September - please diarise:

The Netcare/CanSurvive

Relay Walk for Cancer Join us for a walk around the lovely suburb of Lonehill in aid of CanSurvive Support Groups and their CanAssist Feeding Scheme. There will be a holistic health fair in the park and other support groups and organisations will be invited to join us.

More details and entry forms available shortly

VISION, JULY 2015

Eaten by a bear

Dr. Salwitz is a Clinical Professor at Robert Wood Johnson Medical School.

A bear ate Big Plop. I do not mean a symbolic metaphysical beast representing disease and tragedy; a meat and potatoes, muscle, fur and fang, 10-foot-tall mammal, devoured him. Big Plop finished gnawing on a rib of caribou with side of wild yam, which took a while because he had only three teeth, and then he hobbled away from the fire, his 23-year-old leg bent from a snake bite when he was three, walked behind a tree to relieve himself, modesty just becoming the norm, along with his fashionable loin cloth, and wham-o. Big Plop was eaten by a bear.

He lectures frequently in the community on topics related to Hospice and Palliative Care and has received numerous honours and awards, including the Physicians Leadership Award in Palliative Care.

His blog, Sunrise Rounds, can be found at http://sunriserounds.com with threatening or chronic illness. This is natural. You are not nuts or weak or at fault. We are not mentally designed to survive, but we do. Therefore, sometimes, things are going to emotionally fall apart.

Take a deep breath. Give yourself a break. It will pass.

Now, I never met Big Plop, there being 12,400 or so years between his birth and mine, although I do suspect one of my wife’s relatives to be a direct descendent, but I have considered his hasty fate.

Wake up, feeling fine, have a gourmet meal with family, head to el banjo and you are gone. No doctors, hospitals, anxiety, planning, insurance battles, precertification, crippling bills, Internet searches, family dysfunction or prolonged suffering. A simple end, which did not even require hospice. Did this “primitive” man know something we do not?

You have the strength to rebuild and find hope, happiness and laughter. While you are at times frail, you can be incredibly strong.

You can handle the bear because you are simply human.

Perspective For a while, I have been working on a particular project. This has taken a moderate amount of work and a fair amount of thought, but I hope it will be good for patients. I reached a particular milestone in the project, and several people were impressed.

“Congratulations,” they said. I felt good about myself. Puffed out my chest. BMOC. An ounce more self-respect and proud confirmation that I have value in this world. Kudos to me. I almost sprained my elbow, patting my own back.

The average man will have his terminal disease for three years, the average woman five. The 20th Century saw a dramatic transformation from short life, short disease, quick death, to longer life, but years of chronic illness. In 1900 we died of childbirth, trauma or sudden infection; now we linger with heart disease, degenerative conditions, degrading dementias and of course the dread illness, cancer. It strikes me that while the physical science of medicine has undergone a revolution, mentally we are still wearing deerskin, shivering in the darkness and expecting, at any moment, to be consumed.

Then, I went to the office.

The first patient I saw was a 33-year-old Dad, who had just completed chemotherapy for a scary advanced cancer. It had been a nasty course of treatment with hospitalizations, blood clots, peripheral neuropathy, 27 pound weight gain and a cachectic marriage, which threatened to deteriorate into a custody battle. Tough stuff, and always the unknown life-death future.

The psychology of fight, flight or dinner is very different from the downward cycle of disease, heal, relapse, complication, new disease, partially heal, complication, rehab, etcetera. In the old world, you could be assured that if you felt healthy, you were. If there was not something actively chewing on your foot, then all was good. Sure, there could be another battle, just around then bend, but for now you were fine.

I told him that the PET scan showed no more cancer. Nada. He is in complete remission.

In the modern era, a cancer “survivor”, or a patient with any chronic or potentially relapsing illness, must find a way to cope with the constant burden of the disease’s cold shadow. This is not a natural human instinct, reared as we were for thousands of years on a crisis model. Because we do not cope well with the continued presence of the bear’s paw on our shoulder, this can lead to a range of dysfunction including depression, anger, confusion, social isolation, loss of hope and debilitating labile anxiety which flares whenever there the slightest suggestion of physical malfunction. Even a bug bite, a simple cold or a sprained ankle, releases the fear that the disease may have returned.

With a slight smile and a baffled gaze, he left the exam room. I patted him on the back. “See you next month,” I said.

Instead of walking out of the office, he went over to the treatment room, bustling with the day’s therapies. Patients, families, IVs, drugs, bright lights, anxiety.

From down the hall I watched him tell the RNs, the LPNs, the secretary, and the pharmacist, that the cancer was gone. Then, he seemed to dissolve. He broke into tears; deep racking sobs. Hands shaking.

Swaying. Weak. They hugged him. They held him. They too started to cry.

There are myriad ways in which we adjust to the “beast in the room.” We fight hard to regain strength and health. We become experts in “our” illness and get the finest care. We distract ourselves with work, friends, family and good deeds. We take up hobbies, travel, learning, teaching, giving or reading. Nonetheless, at other times we malfunction and take up drugs, booze, fractured relationships, failed jobs, poly-pharmacy, over-testing, overtreatment and may become overwhelmed by the specter of disease. Mentally designed for sudden battle, we may be depleted by drawn out war.

Then, he said thanks. And, he said thanks. He said thanks and thanks, again.

And, they said, “Congratulations.”

Contacting Jhb Reach for Recovery CANSA offices in Houghton,Johannesburg, have been sold and Reach for Recovery needed to vacate the premises.

The new telephone number is 011 869 1499 or 072 849 2901 should you need to get in touch with Reach for Recovery.

I strikes me that perhaps the most important lesson is to be aware that no matter how hard you try, it can be very difficult to cope

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Celebrating Nelson Mandela’s special day

CanAssist Support Team and the University of Johannesburg students visit Charlotte Maxeke Johannesburg Academic Hospital to celebrate Mandela Day by providing nutritious refreshments 3

Photography by Prophet Israel

VISION, JULY 2015

What to think if you see blood in the toilet

HELP CANSURVIVE TO PROVIDE SUPPORT FOR CANCER PATIENTS

People will frequently advise you to check for lumps and bumps in case you have cancer, but some things are never mentioned. This recent article may help to alleviate any fears you have.

Anyone who has ever seen blood in their urine or blood turning the toilet water red as or after they pee, understands how startling this sight is. But the first thing to know is that it is extremely uncommon for you to lose much blood in your urine. In reality, it takes very little blood to make the bowl turn fairly red (not unlike the effect of only a drop or two of food coloring). The second thing you should know is that not all blood in the urine (called “hematuria”) means cancer, as several benign conditions can also declare themselves through urinary blood alone.

And third, regardless of any embarrassment that you may (unnecessarily) feel in sharing this concern with anyone, you should always see your physician partner, even if you only experience one episode of hematuria, both to make certain that you don’t have a cancer and also to understand what if any treatment you might need for a benign cause of urinary bleeding.

Let’s “take it from the top.” Urine is created in our left and right kidneys before traveling through long, narrow tubes called the left and right ureters. The ureters empty into the single bladder, a very distensible tissue bag which sits centrally in your pelvis (it’s what you

sense when you really need to pee!). When you urinate, the muscles within the bladder wall contract, squeezing urine out of your bladder and through a single, narrow tube, the urethra, which releases your urine to the outside world. In men, the urethra passes through the prostate gland before traveling through the penis.

LET’S TALK ABOUT CANCER!

Blood in the urine can come from any of these urinary system structures, and depending on the specific organ or tissue, you and your doctor may consider benign and/or malignant sources.

So should you find your toilet water pink or red one day, don’t panic (it may be a benign condition), but definitely own your health and see your physician. To learn more about the different conditions which can cause blood in the urine read more at:

Join us at a CanSurvive Cancer Support Group meeting - have a cup of tea/coffee, a chat with other patients and survivors and listen to an interesting and informative talk.

Upcoming meetings: starting at 09:00 at MIDRAND - 25 July - in the Boardroom (follow the signs) at Netcare Waterfall City Hospital HEAD and NECK Group - 6 August at Rehab Matters, Rivonia PARKTOWN - 8 August, Hazeldene Hall (opp. Netcare Park Lane Hospital) Enquiries: Bernice 083 444 5182 or bernicelass@gmail.com Chris 083 640 4949 or cansurvive@icon.co.za www.cansurvive.co.za

http://tinyurl.com/nlk666f

Cancer Support and Information Group 5 August 2015 10:00 – 12:00 in the Boardroom at

GVI Outeniqua Oncology , 3 Gloucester Avenue, George To book your seat contact Engela on 044 884 0806 or email engela.vandermerwe@cancercare.co.za

CONTRIBUTIONS FOR PUBLICATION IN “VISION” NEWSLETTER Comments, articles, letters and events submitted for publication in VISION are welcomed and can be sent to: cansurvive@icon.co.za.

Let us know what items you would like to see more of in VISION.

The Groups are run in association with the Johannesburg Branch of Cancer Buddies and is hosted by Netcare. The Group is open to any survivor, patient or caregiver. No charge is made.

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VISION, JULY 2015

Four great gratitude strategies

"Four great gratitude strategies" byJuliana Breines originally appeared on Greater Good, the online magazine of UC Berkeley's Greater Good Science Centre. To view the original article go to http://greatergood.berkeley.edu/article/item/four_great_gratitude_strategies

By Juliana Breines

Over the past two decades, much of the research on happiness can be boiled down to one main prescription: give thanks. Across hundreds of studies, practicing gratitude has been found to increase positive emotions, reduce the risk of depression, heighten relationship satisfaction, and increase resilience in the face of stressful life events, among other benefits.

ness, kindness, connection, and resilience. Here I highlight GGIA’s gratitude practices, which can be divided into four main categories.

1. Count your blessings Some days it feels like everything is going wrong. But often, even on bad days, good things happen, too—we’re just less likely to notice.

The problem is, gratitude doesn’t always come naturally. The negatives in our lives - the disappointments, resentments, and fears sometimes occupy more of our attention than the positives.

That’s where the Three Good Things practice comes in. This practice involves spending 5 to 10 minutes at the end of each day writing in detail about three things that went well that day, large or small, and also describing why you think they happened. A 2005 study led by Martin Seligman, founder of the Positive Psychology Centre at the University of Pennsylvania, found that completing this exercise every day for one week led to increases in happiness that persisted for six months.

But Robert Emmons, a leading scientific expert on gratitude, argues that intentionally developing a grateful outlook helps us both recognise good things in our lives and realise that many of these good things are “gifts” that we have been fortunate to receive. By making gratitude a habit, we can begin to change the emotional tone of our lives, creating more space for joy and connection with others.

This simple practice is effective because it not only helps you remember and appreciate good things that happened in the past; it can also teach you to notice and savour positive events as they happen in the moment, and remember them more vividly later on.

By reflecting on the sources of these good things, the idea is that you start to see a broader ecosystem of goodness around you rather than assuming that the universe is conspiring against you.

Fortunately, researchers have identified a number of practices for cultivating gratitude. Many of them are collected on the Greater Good Science Centre’s new website, Greater Good in Action (GGIA), which features the top research-based exercises for fostering happi-

BARNYARD THEATRE RIVONIA

Similar to Three Good Things is keeping a Gratitude Journal, which involves writing down up to five things for which you are grateful once a week and reflecting on what these things mean to you. For this practice, you can expand the scope of your gratitude beyond good things that happened that day and consider positive events from your past and even those coming up in the future. The Gratitude Journal is especially effective when you focus on specific people you’re grateful to have - or have had - in your life.

50 CARAT GOLD The 50 Greatest Songs of All Time

25 July 13h00 The 50 greatest songs are the most defining moments in music history, featuring a 10-piece cast performing songs that have topped the charts in the last 60 years.

2. Mental subtraction Find out how gratitude can help you through hard times.

In the words of Joni Mitchell, “you don’t know what you’ve got till its gone.” But sometimes just imagining that something is gone is enough to make you appreciate what you’ve got.

Proceeds to go to Face Value Foundation, a registered non-profit organisation (NPO 18/11/14/2470) promoting research, education and early detection of head and neck tumours, as well as effective management maximising multidisciplinary treatment outcomes and patient-centred care.

One way to do that is to engage in the Mental Subtraction of Positive Events practice, which involves considering the many ways in which important, positive events in your life - such as a job opportunity or educational achievement - could have never taken place, and then reflecting on what your life would be like without them.

A series of 2008 studies led by Minkyung Koo found that completing a 15-minute mental subtraction writing exercise led to increases in happiness and gratitude.

Support is offered at CanSurvive Rivonia Head & Neck Support Group monthly meetings.

Venue: The Rivonia Barnyard Theatre Date: Saturday 25 July 2015 Time: Open at 12h00, Show starts at 13h00 Tickets: R170 per person RSVP: alexia@facevaluefoundation.co.za

Mental subtraction can counteract the tendency to take positive events for granted and see them as inevitable; instead, it helps you recognise how fortunate you are that things transpired as they did.

One variation on this practice is Mental Subtraction of Relationships, which is similar to Mental Subtraction of Positive Events but involves focusing specifically on important relationships, such as close friends or romantic partners. Although it may be painful to imagine your life without someone you care about, doing so once in

(continued on page 5) 5

VISION, JULY 2015

Gratitude (cont. from page 4)

Collective South African Voices for Cancer

a while can serve as a reminder not to take that person for granted and may improve your relationship as a result.

3. Savour

www.canceralliance.co.za

Ever notice that the first bite of cake is usually the best? We have a tendency to adapt to pleasurable things - a phenomenon called “hedonic adaptation” - and appreciate them less and less over time.

But we can interrupt this process by trying the Give it Up practice, which requires temporarily giving up pleasurable activities and then coming back to them later, this time with greater anticipation and excitement.

The Cancer Alliance is a collective group of cancer control non-profit organisations and cancer advocates brought together under a common mandate, to provide a platform of collaboration for cancer civil society to speak with one voice and be a powerful tool to affect change for all South African adults and children affected by cancer.

A 2013 study conducted by Jordi Quoidbach and Elizabeth Dunn found that abstaining from a pleasurable activity for a week (in this case, eating chocolate) led people to derive greater pleasure from it and feel greater appreciation for it when they eventually indulged in it again.

tude, writing a thoughtful, detailed Gratitude Letter is a great way to increase your own feelings of gratitude and happiness while also making the other person feel appreciated and valued; it may also deepen your relationship with them.

The goal of this practice is not only to experience more pleasure but to recognise how we take lots of pleasures for granted, and to try to savor them more. We often assume that more is better - that the greatest enjoyment should come from abundance and indulgence but research suggests that some degree of scarcity and restraint is more conducive to happiness.

The 2005 study led by Martin Seligman described above also tested the effects of writing and delivering a gratitude letter, finding that, of the five different practices that the researchers tested, this practice had the greatest positive impact on happiness one month later.

Those who delivered and read the letter to the recipient in person, rather than just mailing it, reaped the greatest benefits.

It’s important to note, though, that six months after writing and delivering their Gratitude Letter, participants’ happiness levels had dropped back down to where they were before the visit. This finding reminds us that no single activity is a panacea that can permanently alter happiness levels after just one attempt. Instead, gratitude practices and other happiness-inducing activities need to be practiced regularly over time, ideally with some variety to avoid hedonic adaptation.

And because not every practice will feel right for everyone, it’s worth trying out as many practices as you can to find the ones that work best for you. The gratitude practices you’ll find on Greater Good in Action are as reliable a place to start as any.

But abstaining from the pleasures in your life isn’t the only way to help you savour them. Instead, you can try taking a Savouring Walk.

In the age of smartphones, it’s a common experience to walk down the street with your eyes glued to your screen, unaware of your surroundings. But even without a phone in hand, you may simply be distracted or in a rush, and as a result you may miss opportunities to take in some things that can make you feel good—beautiful or awe-inspiring scenery, acts of kindness between people, adorable children.

The Savouring Walk involves walking for 20 minutes by yourself once a week, ideally taking a different route each time, paying close attention to as many positive sights, sounds, smells, or other sensations as you can. Research by Fred Bryant and Joseph Veroff has found that taking this kind of stroll led to an increase in happiness one week later.

In addition to making you feel good, becoming more attuned to your surroundings can also give you more opportunities to connect with other people, even if it’s just to share a smile.

4. Say “thank you” Gratitude can be especially powerful when it’s expressed to others. Small gesture of appreciation, such as thank you notes, can make a difference, but there are some things that deserve more than a fleeting “thanks!”

If there is anyone in your life to whom you feel you’ve never properly expressed your grati-

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VISION, JULY 2015

Why doctors need to listen - and understand the patient’s

Palliative care training

perspectives – a true story by Steve Wilkins

Throughout the year Hospice Wits host various short courses: the 5day Introduction to Palliative Care, 2,5-Day Grief, Loss and Bereavement Workshop, 5-day Introduction to Paediatric Palliative Care, 3-day Non-Clinical Palliative Care, 3-Day Physical Assessment Workshop, as well as other client specific courses which they present on request.

Courses and workshops are also offered at a clients’ premises for groups of more than 10.

For further details phone 011 483 9100 or email training@hospicewits.co.za.

Perhaps the most fundamental principle of “patient-centred care” is for clinicians to understand the patient’s perspective regarding key aspects of a care episode.

Here’s a real life example that just happened to my wife and I that should help you understand what the patient’s perspective is … and why it matters.

For the past week my wife, who is being treated for severe recurrence of lung cancer, has developed fever and chills which present in the early evening. I notified her Oncologist when the fevers first started. Upon my wife’s suggestion (she is an RM) a urine sample was taken and evaluated. She had a UTI and was put on antibiotics.

But the fever (and infection) continued. Each episode begins with a fever and progresses to chills, coughing, vomiting and disorientation.

The episodes last for an hour and then goes away after which my wife sleeps and is fine. That was until yesterday …

by the incorrect treatment, intervention by specialists and extended hospital stays.

My reaction was to blow off the Oncologists advice. He didn’t seem to hear me when I described how my wife’s fever came and went. I just got the sense that the doctor want scared and wanted us out of his office. The Oncologist did not want to hear about our previous ER experiences. He just wanted me to do what I was told. This doctor has a strong ego and is definitely physician-centred (versus patient-centred).

Yesterday, while in her oncologist’s office, the fever and chills set in very fast. I did what I could to keep her warm (which is impossible in any doctor’s office) and reassure the staff that this was a “syndrome” she experienced every day presumably as the result of a recent urinary tract infections. The doctor and staff would have none of my explanation …they said she need to go to the ER immediately. I said “if I take her to the ER she will die … and that I would take her home instead and let the fever run its’ course” as it had up until then.

Luckily I took my wife to the ER. She had a BP of 60/40 and a temperature of 105°. She was later admitted to the ICU with sepsis caused by an infection.

My point?

I tried to explain to the Oncologist that on three prior occasions when I took my wife to an ER (in a different town for other reasons) the ER doctors wanted to re-diagnose my wife’s cancer … or worse … diagnose her as being septic and having pneumonia (when she wasn’t and didn’t). Turns out my wife’s symptoms and chest X-rays mimic those of sepsis and pneumonia. I was afraid it would happen again if we did what the Oncologist said. I asked the Oncologist to call the ER and give them a heads up concerning my wife’s condition and a working diagnosis.

The point of this story is that if the Oncologist took the time to listen to “our story” concerning our previous ER experiences (our health perspective) he would have better understood why I reacted to his advice the way I did. Had he listened to and understood our story maybe he would have called the ER doctor to give him some “back story” on my wife. But he didn’t … he wouldn’t and that cause me to distrust him and his clinical advice.

Had the Oncologist even told us that my wife had a temperature of 105O or a very low BP I would have done what he recommended.

But he didn’t …and I was too stressed to ask.

He wouldn’t do it. He wanted the ER to do a diagnostic work up of my wife. In my mind this confirmed in my mind that if we went to the ER it would be another nightmare.

I’ll bet our experience is like those of many patients and family members today.

What am I trying to say

The take away?

As my wife’s caregiver, I had a very definite, unmistakable reaction to the doctor’s recommendation that my wife be taken to the ER. My reaction was based upon my prior ER experiences with my wife – bad experiences which began with a misdiagnosis in the ER, unquestioning acceptance of the diagnosis by hospitalists, followed

I know I sound like a broken record but the solution is for physicians to become more patient-centred. This means learning how to think about patients differently - and in turn how to talk with patient differently.

Specifically it means understanding where their patients (and family members) are coming from. In my case, by understanding that we all come with “baggage” that shapes how we think and behave. My comment to the effect that “if I take my wife to the ER she will die” should have promoted a “why do you say that?” comment from my wife’s Oncologist. But that never happened and I am sure the doctor thinks I am a total moron.

Stephen Wilkins is the Founder & CEO Mind The Gap Academy http://mindthegapacademy.com/- a communication advisory, consulting and solutions group specialising in the areas of physician-patient communications and engagement.

He writes that “not everyone finds their "niche" in life. You know, that special place where they were meant to be be. Turns out the subject of physician-patient communication (in its many facets) and patient engagement is my professional niche. Consumer (aka patient) health behavior would be a close second.”

I learned an important lesson as well. Usually physicians do know what’s in the patient’s best interest. I learned that sometime its’ better to compliant and alive than disagreeable and dead.

It’s just seems however that there has to be a better, win-win scenario than patients always needing to “go along to get along.”

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VISION, JULY 2015

Dates to diarise

CONTACT DETAILS Cancer Buddies Johannesburg branch, and CanSurvive Cancer Support Groups - Parktown and Waterfall : Chris Olivier 083 640 4949, cansurvive@icon.co.za

July 2015 25

CanSurvive Cancer Support Group, Netcare Waterfall City Hospital, Midrand, 09:00

25

Metastatic Breast Cancer brunch, Cape Town 08:00 to 12:30. contact 021 565 0039, admin@plwc.org.za.

30

Reach for Recovery, Cape Peninsula 10:00. Psychology and breast cancer

CanSurvive Head and Neck Support Group, Rivonia, Johannesburg.

Contact Kim Lucas 0828801218 or lct@global.co.za Cancer Buddies/People Living with Cancer, Cape Town: 076 775 6099, info@plwc.org.za, www.plwc.org.za GVI Oncology /Cancer Buddies, Rondebosch Medical Centre Support Group. Contact: Linda Greeff 0825513310 linda.greeff@cancerbuddies.org.za

August 2015 1

Bosom Buddies, Hazeldene Hall, Parktown, 09:30 for 10h00

6

CanSurvive Head and Neck Support Group, at Rehab Matters, 1 De la Rey Rd. Rivonia at 18h00

8

CanSurvive Cancer Support Group, Hazeldene Hall, Parktown 9:00 Prostate & Male Cancer Support Group, Auditorium, Constantiaberg MediClinic, 18:00

18 22 27

GVI Cape Gate Support group: 10h00-12h00 in the Boardroom, Cape Gate Oncology Centre.| Contact: Caron Caron Majewski, 021 9443800 GVI Oncology Somerset West Group for advanced and metastatic cancers. Contact person: Nicolene Andrews 0218512255 Cancer.vive, Frieda Henning 082 335 49912, info@cancervive.co.za Can-Sir, 021 761 6070, Ismail-Ian Fife, ismailianf@can-sir.org.za Support Group: 076 775 6099.

CanSurvive Cancer Support Group, Netcare Waterfall City Hospital, Midrand, 09:00

More Balls than Most: febe@pinkdrive.co.za, www.pinkdrive.co.za, 011 998 8022

Reach for Recovery, Cape Peninsula 10:00. Does deodorant cause breast cancer?

Prostate & Male Cancer Support Action Group, MediClinic Constantiaberg. Contact Can-Sir: 079 315 8627 or Linda Greeff 0825513310 linda.greeff@cancerbuddies.org.za

September 2015 3

CanSurvive Head and Neck Support Group, at Rehab Matters, 1 De la Rey Rd. Rivonia at 18h00

Wings of Hope Breast Cancer Support Group 011 432 8891, info@wingsofhope.co.za

5

Bosom Buddies, Hazeldene Hall, Parktown, 09:30 for 10h00

5

Can-Sir & Can-Sir malecare, Prostate Awareness Breakfast 9:30 (Venue TBA)

PinkDrive: www.pinkdrive.co.za, Johannesburg: febe@pinkdrive.co.za, 011 998 8022 Cape Town: Adeliah Jacobs 021 697 5650 Durban: Liz Book 074 837 7836, Janice Benecke 082 557 3079

8

Reach for Recovery, Roodepoort Centre for the Aged, Robinson Street, Horizon14h00

12

CanSurvive Cancer Support Group, Hazeldene Hall, Parktown 9:00 Wings of Hope, German International School, Parktown, 09:30 for 10:00

12 15

Prostate & Male Cancer Support Group, Auditorium, Constantiaberg MediClinic, 18:00

16

Reach For Recovery, Johannesburg, venue to be anounced

Bosom Buddies: 011 482 9492 or 0860 283 343, Netcare Rehab Hospital, Milpark. www.bosombuddies.org.za.

CHOC: Childhood Cancer Foundation SA; Head Office: 086 111 3500; headoffice@choc.org.za; www.choc.org.za CANSA National Office: Toll-free 0800 226622 CANSA Johannesburg Central: 011 648 0990, 19 St John Road, Houghton, www.cansa.org.za CANSA Pretoria: Contact Miemie du Plessis 012 361 4132 or 082 468 1521; Sr Ros Lorentz 012 329 3036 or 082 578 0578

13:30

Reach for Recovery (R4R) : Johannesburg Group, 011 869 1499.

17

Reach for Recovery, Cape Peninsula 10:00. Reconstruction options after surgery

26

CanSurvive Cancer Support Group, Netcare Waterfall City Hospital, Midrand, 09:00

Reach for Recovery (R4R) : West Rand Group. Contact Sandra on 011 953 3188 or 078 848 7343.

Reach for Recovery (R4R) Pretoria Group: 082 212 9933 Reach for recovery, Cape Peninsula, 021 689 5347 or 0833061941 CANSA ofďŹ ces at 37A Main Road, MOWBRAY starting at 10:00

October 2015 1

CanSurvive Head and Neck Support Group, at Rehab Matters, 1 De la Rey Rd. Rivonia at 18h00

Reach for Recovery: Durban, Marika Wade, 072 248 0008, swade@telkomsa.net

3

Bosom Buddies, Hazeldene Hall, Parktown, 09:30 for 10h00

Reach for Recovery: Harare, Zimbabwe contact 707659.

10

CanSurvive Cancer Support Group, Hazeldene Hall, Parktown 9:00 Prostate & Male Cancer Support Group, Auditorium, Constantiaberg MediClinic, 18:00

20

Breast Best Friend Zimbabwe, e-mail bbfzim@gmailcom Cancer Centre - Harare: 60 Livingstone Avenue, Harare Tel: 707673 / 705522 / 707444 Fax: 732676 E-mail: cancer@mweb.co.zw www.cancerhre.co.zw

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VISION, JULY 2015 irradiation after surgery, with an average follow-up of about seven years.

News in brief

The next phase for Kamrava and his team will be to analyse the results of randomised trials comparing whole breast versus partial breast irradiation.

Cancer treatment quackery slammed by FDA

The complete study is available online in the journal Annals of Surgical Oncology.

Be wary of possible side effects, drug interactions when using alternative health supplements, physicians caution

Experimental treatment sends deadly leukaemia into remission

One potentially fake cancer drug sold online can actually cause malignancies. One enema machine, purported to treat ovarian cancer under the FDA banner, was never cleared for sale in the US, federal health officials assert.

An experimental new treatment approach for a rare, deadly leukaemia can send the disease into remission even in patients for whom the standard therapy has failed, buying them more time to have the stem cell transplant that could save their lives, a small pilot study has found.

Cancer-treatment fraud is “particularly heartless,” FDA officials say, because it preys on the desperation of patients who are tempted “to jump at anything that appears to offer a chance for a cure.”

"It was unbelievable, really, seeing a patient who had already failed Campath [the drug typically used to treat the disease] literally going back into remission," said Thomas P. Loughran Jr., M.D., director of the University of Virginia Cancer Centre and one of the leaders of the study. "We were able to get every single patient back into remission."

For curious consumers, the FDA posts a running list of “fake cancer cures” that currently spans 187 oils, drinks, plants and animals parts sold by web merchants from North Carolina to Oregon. That catalogue of quackery includes “Pacific Ocean Shark Cartilage,” “Wild Yam Cream,” “Lung Cancer Tea Formula” and a product simply called “CancerGene.”

The new approach to battling T-cell prolymphocytic leukemia combines immunotherapy -- boosting the body's immune system -- with epigenetics, the manipulation of gene activity. It's a cutting-edge combination that holds great promise not just for treating T-cell prolymphocytic leukemia but, possibly, many other cancers as well.

"There's been a revolution in the last few years seeing success with immunotherapy, and people speculated that perhaps if you combined epigenetic and immunotherapy, that might be even more spectacular," Loughran said. "This is proof of principle that this might be true."

http://news.cancerconnect.com/cancer-treatment-quackery-fuelsconcern-among-doctors-fda/

Breast cancer treatment with good patient outcomes A new study by UCLA scientists has found that women diagnosed with breast cancer and treated with a one-week regimen of partial breast radiation after the surgical removal of the tumour, or lumpectomy, saw no increase in cancer recurrence or difference in cosmetic outcomes compared to women who received radiation of the entire breast for a period of up to six weeks after surgery. The study is one of the largest ever done on partial breast irradiation.

The pilot study, led by Loughran at UVA and Elliot Epner, M.D., at Pennsylvania State University College of Medicine, looked at eight patients with T-cell prolymphocytic leukemia, an aggressive cancer that is extremely difficult to treat. It's also extremely rare, appearing most commonly in older men.

The study lasted two decades and was led by Dr. Mitchell Kamrava, an assistant professor of radiation oncology at UCLA and member of the Jonsson Comprehensive Cancer Centre. Kamrava and his team found that with partial breast irradiation the total length of treatment can be reduced to a week because the smaller area of treatment allows for a higher dosage per treatment. Additionally, because partial breast radiation is more targeted, there is less exposure to vital organs like the lungs and the heart.

http://www.medicalnewstoday.com/releases/295956.php?tw

Could the magnolia tree help combat head and neck cancers?

Head and neck cancers are responsible for the deaths of more than 20,000 people in the US every year, highlighting the need for new prevention and treatment strategies for the cancers. A new study has revealed how a compound found in the bark and leaves of the magnolia tree could provide just that.

The study followed over 1,000 women who received partial breast

Researchers from the Birmingham Veteran Affairs Medical Centre, AL, and the University of Alabama at Birmingham (UAB) found the compound - called honokiol - blocked a protein that drives tumour growth in squamous cell head and neck cancers, most commonly caused by tobacco and alcohol use.

Tollfree service for cancer patients Cancer Buddies has a tollfree number - it is

The researchers note that honokiol is well known for its medicinal properties. The compound has been used in traditional Chinese and Japanese medicine for the treatment of anxiety and stress for hundreds of years.

0800 033 337 All cancer patients now have access to free cancer support and can ask any questions about cancer and treatment of cancer; the emotional issues related to the cancer journey; questions about side effects of treatment; assistance with accessing resources like wigs, prosthesis, home nursing and hospice. Problems relating to access to treatment or services delivery issues can also be reported .

In recent years, however, studies have indicated that honokiol also holds some anticancer properties, with researchers finding it prevents or reduces tumour growth in models of breast, skin, prostate and nonsmall cell lung cancers.

For their study, Dr. Katiyar and colleagues set out to see whether the

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VISION, JULY 2015 magnolia compound may be effective against head and neck cancers.

A protein called epidermal growth factor receptor (EGFR) is overexpressed in around 90% of all cases of squamous cell head and neck cancers, the researchers say, making the protein a promising drug target.

One drug already approved by the US Food and Drug Administration (FDA) for treatment of head and neck cancers - Cetuximab - targets EGFR, as do some small molecule inhibitors, such as gefitinib (Iressa), that are currently under investigation for this use. But Dr. Katiyar and colleagues say there are some downsides to such drugs.

"The poor response rates, toxicity and resistance of these drugs or inhibitors have limited their use as therapeutic agents for HNSCC [head and neck squamous cell carcinoma]," he explains. "Therefore, development of less toxic and less resistance-associated alternative treatment options is urgently needed."

CUSA ultrasound device, the kidney continues to be perfused with blood during the surgical procedure. As our study shows, the new surgical technique allows renal function to be fully maintained, even though we can achieve the same oncological and surgical results as we do with clamping the organ. This has enabled us to resolve one of the major surgical problems of the last two decades." http://www.medicalnewstoday.com/releases/296691.php?tw

Chemotherapeutic coatings enhance tumourfrying nanoparticles Researchers at Duke University have devised a heat-induced nanoparticle drug delivery system to make a promising nanoscale cancer treatment even more deadly to tumours.

As such, the team assessed the effects of honokiol when introduced to human cell lines of a number of head and neck cancers, including cancers of the oral cavity, larynx, tongue and pharynx. The compound was also tested on mice that had tumours of these cancers implanted.

The invention allows an extremely thin layer of hydrogels (think contact lenses) to be deposited on the surface of nanoshells - particles about a hundred nanometers wide designed to absorb infrared light and generate heat. When heated, these special hydrogels lose their water content and release any molecules (such as drugs) trapped within.

In both the human cancer cell lines and mouse models, the researchers found honokiol was able to bind to and reduce expression of EGFR, which stopped the growth of cancer cells.

By depositing the hydrogels on tumour-torching nanoshells and loading the new coating with chemotherapeutic drugs, a formidable onetwo punch is formed.

What is more, the researchers found honokiol binds more strongly to EGFR than the drug gefitinib, suggesting it may be a more effective treatment strategy against head and neck cancers.

The next step for the new cancer treatment is tests in live animals.

While those experiments are in progress, human trials are still at least a couple years away.

http://www.medicalnewstoday.com/articles/295962.php?tw

http://tinyurl.com/q4no9nk

New surgical technique preserves kidney function following tumour removal

Does radiation from X-rays and CT scans really cause cancer?

In order to preserve the kidney's wide range of functions, every effort is made not to remove the entire kidney, but rather just a portion of it in the event of renal cell carcinomas. A surgical method that preserves long-term renal function has now been carried out successfully for the first time in the Department of Urology at the MedUni Vienna and Vienna General Hospital.

In recent years, there has been widespread media coverage of studies purporting to show that radiation from X-rays, CT scans and other medical imaging causes cancer. But such studies have serious flaws, according to a recent article in the journal Technology in Cancer Research & Treatment, including their reliance on an unproven statistical model. The corresponding author is Loyola University Medical Centre radiation oncologist James Welsh, MS, MD.

A surgical ultrasound device is used that was previously used for liver cell carcinomas. In the pilot study, recently published in the highly respected journal World Journal of Urology, this method has now been applied successfully at the Department of Urology at the Medical University of Vienna for the first time to the surgical treatment of complex renal tumours.

Patients benefit twice from the new technique: during the operation itself, the risk of bleeding and complications is lower. In the long term, renal function is preserved and there are no long-term consequences of renal impairment.

Until now, "cold ischaemia" has been used during the removal of renal tumours. With this method, the blood vessels supplying the kidney are clamped and the kidney is cooled. This is essential since the kidney bleeds very heavily when incised - and in humans, around 15 to 20 per cent of the entire blood supply is located in the two kidneys. "Cold ischaemia", however, has a serious disadvantage: the clamping of the vessels damages the renal vessels, significantly increasing the long-term risk of renal impairment.

This does not happen in procedures using the CUSA (Cavitron Ultrasonic Surgical Aspirator) ultrasound device, as study leader Shahrokh Shariat, Head of the University Department of Urology at the MedUni Vienna and Vienna General Hospital, explains: "With the

"Although radiation is known to cause cancer at high doses and highdose rates, no data have ever unequivocally demonstrated the induction of cancer following exposure to low doses and dose rates," Dr. Welsh and co-author Jeffry Siegel, PhD, write.

Studies that have found a cancer link to medical imaging typically employ a model called "linear no-threshold" (LNT). In LNT, the wellestablished cancer-causing effects of high doses of radiation are simply extrapolated downward in a straight line to low doses. The LNT model assumes there is no safe dose of radiation, no matter how small.

But although LNT is used by regulators around the world, the model "is of questionable validity, utility and applicability for estimation of cancer risks," Drs. Welsh and Siegel write.

Contrary to the LNT model, there is compelling evidence that the human body has evolved the ability to repair damage from low-dose radiation. For example, the mutation rate caused by low-dose background radiation in the environment is 2.5 million times lower than the rate of spontaneous mutations in the body. So even if the LNT model were true, the small increase in mutations caused by low-dose radiation from medical imaging would be unlikely to overwhelm the body's defenses.

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VISION, JULY 2015 Studies purporting to find a cancer link to medical imaging radiation have other flaws besides the questionable LNT model. For example, two recent studies suggested possible increased cancer risks from low-radiation doses associated with pediatric CT scans. But these cancers likely are due to the medical conditions that prompted the CT scans, and have nothing to do with the radiation exposure, Drs. Welsh and Siegel write.

While many people focus on the purported risks of radiation in medical imaging, "the more significant and actual risks associated with not undergoing an imaging procedure or undergoing a more invasive exploratory surgery are generally being ignored in both the scientific literature and the popular media," Drs. Welsh and Siegel write. http://www.medicalnewstoday.com/releases/296158.php?tw

Immunotherapy may boost chemo outcomes in pancreatic cancer Researchers report that adding a novel immunotherapy to gemcitabine extends survival in patients with pancreatic cancer, particularly those with metastatic disease, and maintains and might improve quality of life.

The experimental immunotherapy, known as IMM-101 is a suspension of heat-killed Mycobacterium obuense that induces CD8+ T-cell responses.

The combination of IMM-101 plus gemcitabine improves outcomes and quality of life, and has a favourable adverse-event profile, according to investigator Angus Dalgleish, MD, professor of oncology at St. George's University of London, United Kingdom.

This finding is particularly important because the patients receiving immunotherapy were older and had more severe disease, which would attenuate its potential impact, he noted addressing the 17th World Congress on Gastrointestinal Cancer.

The mode of action of IMM-101 is important. "It wakes up the innate immune response, although it's not a vaccine per se," he told Medscape Medical News. It boosts "the gamma delta cells, and that leads to an awakening of CD8+."

Interest in IMM-101 was sparked when studies demonstrated that it can reduce the metastatic burden. In fact, before his team conducted this study, "I'd treated some patients with IMM-101," Dr Dalgleish reported.

"I was using the agent in melanoma. We'd done some laboratory research that indicated there was real synergy with gemcitabine, so I started using this in pancreatic patients," he said. http://tinyurl.com/qxn9nsk

Lung cancer patients who stop smoking live longer

their first contact with TACS (71) had reduced mortality rates compared to patients who continued to use tobacco. The median survival for patients who reported they had stopped smoking was 28 months compared with 18 months for those who continued to use tobacco.

The survival advantage for those who stopped smoking was adjusted for demographics, disease stage and other health characteristics.

"To our knowledge, this is one of the first studies to examine the impact of tobacco cessation on survival among lung cancer patients who participated in a mandatory assessment and automatic referral to a tobacco cessation service," says senior author Mary Reid, MSPH, PhD, Director of Cancer Screening and Survivorship at Roswell Park.

Results also suggested that there may be a survival benefit even if a patient has not completely quit tobacco use, but continues to attempt to quit after a cancer diagnosis. Mortality rates for those who relapsed were similar to current users. http://www.medicalnewstoday.com/releases/296754.php?tw

Medical benefits of cannabis separated from some unwanted side effects Scientists at the University of East Anglia, University of Barcelona, University Pompeu Fabra and several other European institutions have found a way to separate the medical benefits of cannabis from some of its unwanted side effects.

The research comes from the team that had previously discovered how the main psychoactive ingredient in cannabis, known as tetrahydrocannabinol or THC, reduces tumour growth in cancer patients.

Their latest findings, publishing on in the Open Access journal PLOS Biology, reveal how some detrimental cognitive effects of THC are triggered by a pathway which is separate from some of its other effects.

That pathway involves both a cannabinoid receptor and a serotonin receptor. When it is blocked, THC can still exert several beneficial effects - including pain relief - while avoiding impairment of memory.

The research was carried out in mice, but it is hoped that the breakthrough will pave the way for safe cannabis-based therapies that do not cause alterations in mood, perception or memory.

"This research is important because it identifies a way to reduce some of what, in medical treatment, are usually thought of as THC's unwanted side effects, while maintaining several important benefits including pain reduction", said Dr McCormick.

However, he warned that patients should not be tempted to selfmedicate, "patients should not use cannabis to self-medicate, but I hope that our research will lead to a safe synthetic equivalent being available in the future."

DISCLAIMER: This newsletter is for information purposes only and is not

Tobacco cessation provided significant survival benefit for lung cancer patients who quit smoking shortly before or after diagnosis, despite the severity of the disease. Results of the Roswell Park Cancer Institute study were published in the Journal of Thoracic Oncology.

intended to replace the advice of a medical professional. Items contained in Vision may have been obtained from various news sources and been edited for use here. Where possible a point of contact is provided. Readers should conduct their own research into any person, company, product or service. Please consult

Roswell Park has a unique Tobacco Assessment and Cessation Service (TACS) that conducts a standardised tobacco use assessment for lung cancer patients treated in the Thoracic Centre, and automatically refers patients who smoke to a dedicated tobacco cessation counseling service. Using data from TACS, 250 patients participated in the study. Those who had recently stopped smoking (50), or quit after

your doctor for personal medical advice before taking any action that may impact on your health. The information and opinions expressed in this publication are not recommendations and the views expressed are not necessarily those of People Living With Cancer, Cancer Buddies, CanSurvive or those of the Editor.

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