2011 August Newsletter

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The Angels walked in support of children with cancer
The very popular annual Angels Walking For Cancer took place at the Johannesburg Zoo on 7 August and as always it was a very colourful affair. The crowd enjoyed great entertainment and had a wonderful day while supporting a very worthwhile cause.

LIVESTRONG serves people affected by cancer and empowers them to take action against the world’s leading cause of death. LIVESTRONG – is a leader in the global movement on behalf of 28 million people around the world living with cancer today. Known for its iconic yellow wristband, LIVESTRONG has become a symbol of hope and inspiration to people affected by cancer around the world. Since its inception, the organisation has raised more than $400 million for the fight against cancer. www.LIVESTRONG.org.


Early morning smoking riskier for cancer
Smokers who light up right after they wake up in the morning may be at greater risk for lung, head and neck cancers than those who wait longer before having their first cigarette of the day, a new study finds. The study appears in the journal Cancer. "These smokers have higher levels of nicotine and possibly other tobacco toxins in their body, and they may be more addicted than smokers who refrain from smoking for a half hour or more," said Joshua Muscat, of Penn State College of Medicine in Hershey, in a journal news release. "It may be a combination of genetic and personal factors that cause a higher dependence to nicotine." In the study, researchers compared 4,775 lung cancer patients with 2,835 smokers who didn't have cancer. They found that those who smoked 31 to 60 minutes after waking up were 1.3 times more likely to develop lung cancer than those who waited at least an hour before lighting up. Meanwhile, those who smoked within 30 minutes of waking up were 1.79 times more likely to develop lung cancer. In a separate analysis, the investigators compared 1,055 smokers with head and neck cancer with 795 smokers without the disease. Those who smoked 31 to 60 minutes after waking up were 1.42 times more likely to develop cancer than those who waited more than 60 minutes to have a cigarette. Smokers who had their first cigarette within a half hour of waking up were 1.59 times more likely to develop head and neck cancer. The findings suggest the desire to have a cigarette immediately after waking up may increase smokers' risk for cancer, the researchers concluded. As a result, these smokers would benefit from smoking cessation programs that specifically target this early morning behavior and the greater risks involved, they added. The U.S. Centers for Disease Control and Prevention provides more information on the health effects of smoking.

We do it all the time at our CanSurvive Cancer Support Group!
Join us on the second Saturday of each month for a cup of tea/coffee, a chat and an interesting talk. 9h00 at 18 Eton Road, Parktown

073 975 1452
email: [email protected]

Medi-Clinic supports PLWC
People Living With Cancer and the CanSurvive Cancer Support Group Committee wish to thank Medi-Clinic for their ongoing support, they have allowed us to use their facilities and provided refreshments for the CanSurvive Cancer Support Group for almost two years and this is much appreciated. We value the support and generosity of Medi-Clinic and their commitment to improving services rendered to cancer patients and their families.

Sechaba’s Sizwe Cancer Awareness Week
Sechaba Medical Solutions, administrators of Sizwe Medical fund held a very successful awareness week for their staff in the major centres. Goody bags were handed out which contained leaflets aimed at educating staff about the various cancers and who patients could contact for help and advice.


to leave your body. Many questions may run through your mind as you plan your first ventures outside of your home. Can you go back to work after colostomy? Can you ride your bike if you have an ileostomy? Will everyone figure out you've had urostomy surgery just by looking at you? You can do many of the same activities you enjoyed before your colostomy or other ostomy surgery. http://www.mayoclinic.com/health/ostomy/SA00072/?utm_sourc e=LivingwithCancer&utm_medium=email&utm_campaign=Targe tedNewsletter

Find it on the Web
Empowered patients
When Heidi Sitcov’s father was diagnosed with a gastrointestinal stromal tumor and referred to a hospice with just three months to live, her immediate response was to seek out a physician and system that could provide her father with coordinated care. A key component of that care included use of electronic health records (EHRs), where his cancer diagnoses, treatments, and treatment plans would be available for his entire provider team to access and utilize in his continued care. It was that decision that turned her father’s three-month prognosis into nearly four additional years of quality living. http://www.healthit.gov/buzz-blog/ehr-case-studies/daughtercredits-ehrs-giving-time-father/

Adolesent and Young Adult Cancers
The latest issue of the NCI Cancer Bulletin is now available at http://www.cancer.gov/ncicancerbulletin. The Bulletin features Adolescent and Young Adult Cancers (AYAs), and deals with such problems as “Late effects pose lasting problems” and “Confronting psychosocial challenges of cancer”.

Ostomy: Adapting to life after colostomy, ileostomy or urostomy
The Mayo Clinic staff help you to learn all you can about life with an ostomy. Use this information to boost your self-esteem and help you adapt to your ostomy. It takes time to become comfortable with an ostomy — a surgically created opening in your abdomen that allows waste or urine

Articles and letters submitted for publication in VISION are welcomed and can be sent to: [email protected]



Riding to help fight cancer

This brand new organisation, Cancer.vive, consists of an amazing group of cancer survivors and sufferers who want to make a positive difference in the lives of people suffering from the same illness as them. From the 16 September until the 24 September this extraordinary group of people will be crossing the country on Triumph motorcycles with the aim to raise funds, educate, create awareness, identify and develop support systems; not only for people living with cancer, but also their families and friends. The focus of this specific journey will be on the so-called “shy” cancers (breast, cervical, ovarian, prostate and testicular cancer) the cancers that for many are difficult to talk about and often go undetected because of lack of knowledge, fear, stigmas, cultural taboos and more. The importance of early detection and necessary treatment will also be strongly emphasized. Many of the women and men going on this journey are living proof that if you know what to look for and get the proper treatment in time you will be able to live a full and healthy life. To spread the good news in cities, towns and remote and rural villages is no easy task, and it can only be done with the generosity and help of

companies and individuals that take this important matter to heart. In the words of Adéle du Plessis from Revlon (the main sponsor of the Cancer.vive ride): Don’t shy away from the reality of cancer! The ride starts from the University of Johannesburg on Friday 16 September and there will be more details of the event and of the route the bikers will take on the website: www.cancervive.co.za.

More about Cancer.vive

Cancer.vive aims to create awareness of suvivorship of this disease. Honouring those who have lost their battle and most importantly raise funds and awareness to fight the disease through education.

Our Mission
We are a group of cancer survivors celebrating the life we have been given by showing people that there is life after cancer. We do this through creating awareness for all types of cancer, by raising funds for cancer education and the facilitation of cancer support groups in South Africa.

Our Vision
Cancer.vive aims to become the most dynamic and colourful group of cancer survivors, who lead by example in projects by celebrating life through their hands-on and personal participation in communities, educating people about cancer and creating support structures and hope for cancer patients.



Engaging in Health Care
Jessie Gruman, four time cancer patient and founder and president of the excellent Center For Advancing Health, recently gave a talk to the Institute for Clinical Systems Improvement (ICI) entitled “The evidence for and experience of engaging in health care. The audience comprised primarily of doctors, nurses, physician practice employees, health plan (insurance) executives, and hospital staff. To the medical professionals she had this to say: "We repeatedly hear that: • People can’t figure out how to get their test results. • They are puzzled about whom to call after hours or on weekends. • They think that because the receptionist uses a computer that they also have an electronic health record that can be automatically electronically transmitted to other clinicians. • They are baffled about whom they should talk to regarding billing and insurance problems. “A couple years ago, in response to these findings, we developed a model guide for patients and caregivers that identified the basic information people need to interact over time with a given medical practice or setting. The model includes items such as: • • • • Contact: phone, fax, email, website Location: address, public transportation, parking Medical records: what to bring, how to obtain Special needs: mobility, language, hearing, vision • • • •

East Rand Bikers for Boobs
On 20 August at 08h00 the Bikers for Boobs will ride to promote awareness of Breast Cancer. Quad bikes, off road bikes fancy bikes bakkies, beach buggies any one is welcome, for those who won’t be able to do the offroad track, we can go on the tar track LOL! The meeting place is in the veld in Rondebult Road, Freewaypark (between Sunward Park and Freewaypark) and the route leads to Heidelberg(Die Skip) where a boerewors roll and a cold drink is included. Entries are R130 per driver and R70 per passenger. More information from Adelle Kleynhans Mclean on 082 5599005 or email [email protected] or [email protected]. Their web page is www.pinkbettyboop.co.za.

New therapy options for patients with melanoma
More than 25,000 physicians, researchers, and health care professionals from more than 100 countries attended the 2011 American Society for Clinical Oncology annual meeting. (Image courtesy of ASCO) The much-anticipated findings from two phase III clinical trials of new therapies for patients with metastatic melanoma did not disappoint those in attendance at the American Society of Clinical Oncology (ASCO) annual meeting in Chicago. The trials confirmed that the molecularly targeted agent vemurafenib and the immunotherapy agent ipilimumab (Yervoy) offer valuable new options for a disease in which effective treatments have been lacking. Promising data on melanoma were also seen in a small clinical trial that identified a potential approach to preventing a key side effect of agents with the same molecular target as vemurafenib, a mutated form of the BRAF gene. (See the box at the bottom of the page.) And other lab-based studies identified potential biomarkers that may predict which tumors are more likely to respond to vemurafenib and ipilimumab. After decades of almost no progress, this new research represents a welcome and long-awaited change, remarked Dr. Lynn Schuchter leader of the melanoma program at the University of Pennsylvania Abramson Cancer Center. The full report can be seen at: http://www.cancer.gov/ncicancerbulletin/061411/page2

Payment: How, what, when and who to contact Tests and test results: Which labs, how results communicated Afterhours and emergency care: When and how Prescriptions: Refills, who to call about side effects and adverse events • Care companion: invitation to bring one “By giving us and our families this information, you communicate three important messages: • First, that we are welcome and that you want us to be comfortable. Learn from successful hotels and treat us like guests. • The second message is that you want us to make the best possible use of the care and services you are providing. • And the third message is that you are accountable for what you offer: You have printed it here in black and white that this is how your hospital or practice or clinic operates and you will live up to the commitments you have made. “The sooner we know what the expectations are, the sooner we understand what our role is, the better prepared we will be to assume that role. The belief that we will figure this out ourselves ultimately wastes our time and yours. Like a guide, a pact conveys important messages. You are saying to us that: • • • We are part of the team. We have significant, complex responsibilities that you have helped us understand and define. And you will help us learn how to do them.

“By having this conversation based on a written document, you signal that our participation is critical and you are holding yourselves accountable for helping us to participate competently. "You need to know how important this is to us: By directing your attention purposefully to our concerns, you help us to do the work we must do to live for as long and as well as we can – with all the grace we can muster, all the support we can find and all the dignity we deserve." The full text of Jessie’s speech is available at: http://e-patients.net/archives/2011/06/jessie-gruman-at-icsi.html



For the caregivers ...
Those of you who care for your loved one, who are caregivers, I know that sometimes you are extremely tired. Sometimes when you're up three nights in a row, with your partner's uncontrolled diarrhoea creating a situation where you change the sheets, help him/her into the shower and get clean eight or ten times it's a “hard day's night"- especially when you can't get them to eat or drink, yet there is still diarrhoea. I walked away a few times from the table muttering "I'm not in control; I'm not in control" to myself when nothing was palatable to him....we're only human. We are not saints, so sometimes we're frustrated and exhausted, but I would give anything for more time with my husband: something I can never have. Every one of those moments when you are so worn out that you can hardly move, ill yourself, have more things to do than any human can do, are times when you may want to pause and tell yourself that we never know when things can change over the course of a few days. My husband went to the ER on Friday and died at 1 am the following Thurs, without us being told ahead of time that our time was THAT short. We knew there was no cure for his cancer, but we hoped for months, not the weeks that we had. I just want to say please appeciate every moment that you get with the one you love. Time is fleeting for us all. Some patients may live 20 years - I hope you do! Being the one left behind is harder than you can ever imagine until you're having to live that reality. – Anon. Survivors can help you navigate your way through diagnosis, treatment and the time after treatment ends, which can be the hardest period. As Sheryl M Ness of the Mayo Clinic says: “People in these roles often want to give back by providing

You don’t need to face cancer alone!
We are here to help
You are invited to join us at our Cape Town Cancer Support Group held at Vincent Pallotti Hospital in the GVI Oncology unit
Time: 18h00 – 19h30 See the calendar on page 7 for dates or contact the PLWC helpline on 076 775 6099 WE LOOK FORWARD TO MEETING YOU

support and guidance to others who may be just at the beginning of their cancer experience. This is an empowering experience where the person helping oftentimes gets back as much as they give. For the person receiving the support, it's just so good to be with someone who knows exactly how they're feeling.”



Around the World
Lung cancer in former smokers may be prevented
Celecoxib may emerge as a potent chemopreventive agent for lung cancer, according to a recent study in Cancer Prevention Research, a journal of the American Association for Cancer Research. Celecoxib, a COX-2 inhibitor, was tested among patients who were former smokers and showed a significant benefit in bronchial health as measured by the Ki-67 labeling index, a marker of cellular proliferation or growth, as well as a number of other biomarkers. The findings follow a previous report published in the Journl that showed a similar effect on Ki-67 among former smokers and current smokers. "Taken together, these findings strongly suggest that celecoxib can be used as a chemopreventive agent in these high-risk groups," said Jenny Mao, M.D., a professor of medicine at the University of New Mexico and section chief of pulmonary and critical care medicine at the New Mexico VA Health System. Mao cautioned that large phase III trials are still needed to confirm the findings. Source: American Association for Cancer Research

Dates to remember
29 August 3 September 7 September 9 September Cape Town PLWC Support Group Bosom Buddies Mad Hatters Tea Party R4R General meeting/Support 14h00. Speaker Dr Charlotte Ingram Zip Zap Circus event, Cape Town 19h00 2/3 September CANSA Roodepoort, Relay for Life.

10 September Cancer Support Group, Parktown 0900 16 September Cancervive st University of Jhb. Start of Awareness Ride. Contact Thea 083 602 3102 16-24 Sept Cancervive Awareness Ride (Jhb-CT) see www.cancervive.co.za Bosom Buddies meeting R4R General meeting/Support 10h00 Cancervive SPAR, W.Cape Ladies Day. Contact Elsabe 021 690 0179 LiveSTRONG Day Cancer Support Group, Parktown 0900

26 September Cape Town PLWC Support Group 1 October 1 October 1 October 2 October 8 October

9-15 October Journey of Hope Breast Cancer Motorbike Run - Contact number: 082 840 3633 19 October 30 October 31 October R4R Breast Cancer Tea. Speaker: Dr. Ashwin Hurribunce CHOC Walk, Zoo Lake, Parkview, Johannesburg Cape Town PLWC Support Group

Spanish researchers discover a novel and potent antioxidant
A team of researchers from the Institute of Molecular and Cell Biology (IBMCP) a joint centre of the Universitat Politècnica de València and CSIC, the Spanish National Research Council have identified a novel and potent natural antioxidant occurring in tomato plants. It is a phenolic substance that is synthesised by the tomato plant when it is subjected to biotic stress. Until now, it was completely unknown. The UPV and CSIC have registered the national and international patents of the new antioxidant and the laboratory procedures used to isolate and synthesise it chemically. IBMCP researchers point out that the antioxidant power of the new compound is much higher ,14 times higher to be precise than, for example, that of resveratrol, a well-known antioxidant, found in red wine, which can delay cellular aging. In addition, it is 4.5 times more potent than vitamin E and 10 times more potent than vitamin C. This substance could have multiple applications. For example, in the food industry it could be used as a preservative in food for human consumption and in animal fodder, because of its action as a retarder of lipid oxidation. This powerful antioxidant would prevent changes such as fats and oils becoming rancid, which diminishes food quality extremely. It could also be used as a supplement to functional products. The IBMCP research team explains that when a plant is stimulated by a stressor, the plant reacts and activates mechanisms that alter the levels of certain compounds. "Many phenolic compounds are produced by plants in response to biotic or abiotic stress; these

12 November Cancer Support Group, Parktown 0900 16 November R4R General meeting/Support 10h00. Speakers: Sr Frances Hozan & Dr Sue Walter 26 November Bosom Buddies year end function 0900 28 November Cape Town PLWC Support Group 30 November R4R Year End Lunch 10 December Cancer Support Group, Parktown 0900

CONTACT DETAILS : People Living With Cancer and CanSurvive Cancer Support Group, Johannesburg: 073 975 1452, [email protected] People Living With Cancer,Cape Town: 076 775 6099, [email protected], www.plwc.org.za Bosom Buddies: 0860 283 343, www.bosombuddies.org.za Campaign for Cancer: www.campaign4cancer.co.za CANSA Johannesburg Central: 011 648 0990, 19 St John Road, Houghton, www.cansa.org.za Reach for Recovery (R4R) : Johannesburg, Antoinette Reis, 011 648 0990 or 072 849 2901 Reach for Recovery: Harare, Zimbabwe contact 707659. MBTM: [email protected], www.mbtm.co.za Pink Drive: [email protected], www.pinkdrive.co.za Cancer Centre - Harare: 60 Livingstone Avenue, Harare Tel: 707673 / 705522 / 707444 Fax: 732676 E-mail: [email protected] www.cancerhre.co.zw


compounds have multiple effects, including antioxidant activity", said Vicente Conejero, the director of the research group. Article URL: http://www.medicalnewstoday.com/releases/231620.php

Worthwhile quotes
If you’re going through hell, keep going!” Sir Winston Churchill Thomas Jefferson once said, “Who then can so softly bind up the wound of another, as he who has felt the same wound himself?” One important thing to remember is that the end is not written yet for those who are still here. Some people have the mistaken idea that living longer just brings them another day closer to recurrence or death from their disease. Instead, living longer improves the odds for a patient to continue living. In other words, each day may actually add time to the prognosis. Robin Martinez, Survivor and Patient Advocate. used cartridges with replacement solutions at much higher doses. In fact, the devices are not limited to delivering nicotine. The paper notes that instructions for filling cartridges with marijuana hash oil can be easily accessed on the Internet. • The safety of inhaling propylene glycol over an extended period of time has not been studied in humans. • E-cigarettes may serve as a "bridge product" that smokers use in places where traditional tobacco smoking is prohibited, thus perpetuating their addiction and use of real cigarettes. Additionally, they may be used as a 'starter' product for young people considering smoking, especially since the cartridges can be purchased over the Internet with tempting flavoring like grape and chocolate. Article URL: http://www.medicalnewstoday.com/releases/231482.php

Safety concerns regarding new nicotine delivery products
Devices marketed as "electronic cigarettes" are in reality crude drug delivery systems for refined nicotine, posing unknown risks with little new benefits to smokers, according to tobacco control experts. In a "Perspective" published in the New England Journal of Medicine, researchers from the Legacy's Steven A. Schroeder National Institute for Tobacco Research and Policy Studies explore the current regulatory climate around electronic cigarettes ("e-cigarettes") and their safety. The authors, Nathan K. Cobb, MD, a pulmonologist and assistant professor at Georgetown University Medical Center, and David B. Abrams, PhD, executive director of the Schroeder Institute, also question future implications for physicians, policy makers and e-cigarette users. E-cigarettes are constructed to mimic real cigarettes in size and appearance, but contain no tobacco and are not cigarettes at all. In reality they are delivery devices for refined nicotine, having more in common with inhalers used to treat asthma or other delivery devices for both approved and illicit drugs. Though individual brands vary in construction, the products generally produce a propylene glycol mist containing nicotine along with flavorings and other chemicals. Currently, three interrelated products are being sold: the delivery device itself; cartridges that can contain up to 20 mg of nicotine; and refill kits that allow consumers to fill used cartridges with replacement nicotine solution. Some refill bottles, easily obtained over the Internet, contain enough nicotine to kill an adult if accidentally ingested. The US Food and Drug Administration (FDA) announced earlier this year, that it would regulate e-cigarettes as "tobacco products" and not as "drug-delivery devices." This, the authors note, "upend[ed] the status quo" by having the effect of allowing the sale of unregulated refined nicotine directly to consumers, unless and until the FDA takes further action. While most devices and nicotine fluids are produced by small manufacturers, Cobb and Abrams note that the fact that leading cigarette manufacturers Philip Morris International and British American Tobacco recently purchased sophisticated nicotine inhaler technologies may be an indication that both companies are developing next generation nicotine delivery devices of their own. Cobb and Abrams discuss several safety concerns: • Testing of cartridges reveals poor quality control, variability in nicotine content among brands, and deviations between label claims and cartridge content. • The devices do not reliably deliver nicotine, and have not been sufficiently evaluated in scientific studies the way the FDA requires of other drugs and devices used for smoking cessation. Smokers attempting to use e-cigarettes as quitting aids will most likely find them ineffective due to the fluctuating nicotine content and unpredictable delivery. • Manufacturers sell cartridges with a range of up to 20 milligrams of nicotine. However, refill kits allow consumers to fill

Eggs may help prevent cancer
One of nature's most perfect foods may be even better for us than previously thought. Eggs are well known to be an excellent source of proteins, lipids, vitamins and minerals, but researchers at the University of Alberta recently discovered they also contain antioxidant properties, which helps in the prevention of cardiovascular disease and cancer. Researchers from the Department of Agricultural Food and Nutritional Science at the university examined egg yolks produced by hens fed typical diets of either primarily wheat or corn. They found the yolks contained two amino acids, tryptophan and tyrosine, which have high antioxidant properties. After analysing the properties, the researchers determined that two egg yolks in their raw state have almost twice as many antioxidant properties as an apple and about the same as half a serving (25 grams) of cranberries. However, when the eggs were fried or boiled, antioxidant properties were reduced by about half. A little more than half if the

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. The views expressed are not necessarily those of People Living With Cancer or those of the Editor.



PinkDrive at work
ThePinkDrive truck was at the recent 702 walk to to offer help and examinations to competitors and spectators wanting to know more about breast cancer. The pictures below were taken when PinkDrive honoured Nelson Mandela Day by going to an informal settlement in Irene on 18 July and doing free clinical breast examinations and education to those less fortunate, who do not have the luxury of medical facilities. The PinkDrive medical staff educated women about the importance of early detection and performed clinical breast examinations on approximately 54 women who has never had the facilities of having this done in the past.

eggs were cooked in a microwave, It's a big reduction but it still leaves eggs equal to apples in their antioxidant value,"said Wu. In previous research, Wu found that egg proteins were converted by enzymes in the stomach and small intestines and produced peptides that act the same way as ACE inhibitors, prescriptions drugs that are used to lower high blood pressure. Article URL: http://www.medicalnewstoday.com/releases/230604.php

gists, we are acutely aware of the radiation dose our patients receive and make every attempt to minimise this exposure. iDose allows us to tailor our CT scanning protocols to each individual patient.”

Overcoming cognitive effects of chemotherapy with the help of Tai Chi
According to the American Cancer Society, studies have indicated that a significant number of patients who receive chemotherapy also experience cognitive declines, including decreases in verbal fluency and memory. Now, a University of Missouri health psychologist has found evidence that indicates Tai Chi, a Chinese martial art, might help overcome some of those problems. "Scientists have known for years that Tai Chi positively impacts physical and emotional health, but this small study also uncovered evidence that it might help cognitive functioning as well," said Stephanie Reid-Arndt, assistant professor and chair of the Department of Health Psychology in the School of Health Professions. "We know this activity can help people with their quality of life in general, and with this new study, we are encouraged about how Tai Chi could also help those who have received chemotherapy. I also hope this encourages more people to think about Tai Chi positively on a broader scale in their lives." Tai Chi involves practicing slow motion routines and is based on several principles, including mindfulness, breathing awareness, active relaxation and slow movements. The emphasis on slow movement makes Tai Chi particularly suited to a wide range of fitness levels, which makes it very relevant for those who have had chemotherapy and might be experiencing physical limitations as a result, Reid-Arndt said. Article URL: http://www.medicalnewstoday.com/releases/227756.php

New tech reduces radiation exposure
Ulster Hospital has become the first hospital in Ireland and one of the first in the UK to introduce pioneering new technology, which dramatically reduces the amount of radiation to which patients undergoing a CT scan are exposed. The new CT imaging technology, known as 'iDose', reduces radiation exposure by up to 50%. According to the hospital, the public has recently become more aware of the risks associated with diagnostic radiation. Ionising radiation has been linked to a low but recognised risk of cancer, so radiologists have been working towards reducing the transfer of such radiation to patients during scans. The new CT scanner hardware, which represents an investment of £100 000, allows patients the assurance that they are exposed to 50% less radiation than was previously the case, thus addressing patient concerns about future potential health consequences deriving from exposure to radiation.” It's hoped the new technology will greatly improve the patient experience, and ease concerns amid increased public awareness of the risks surrounding diagnostic radiation. Dr Peter Ball, a consultant radiologist who was instrumental in the implementation of iDose in the Ulster Hospital, added: “As radiolo-


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