| Sunday, September 4, 2011 |
| 'My Sister's Keeper' |
'My Sister's Keeper' a movie that waves many unhidden enmotions for me. A film based on Cancer. A film that shows how a family deals an uncontrolled situaton with immense hope.A sister's dedication to give a thread of hope to her elder sister. Ailing Kate has a hope in Anna. Anna has hope in its wish. Mother has a hope in care. Father has a hope in Family and Brother hopes for all. Its a brilliant movie. I shed tears sometime. I feel that something is attaching myself. Something I am going to miss. Anna and Kate, the protagonists, two sisters, two bodies and one feeling. I am moved by the depiction.
Cancer, is not a word to undestand. It may be debatable that its cure and care is depend on your wealth and faith, but surely its heart rendering that many families has lost many lovely souls.
I dont know how to keep pain in positive words, I dont know how to console a person, who is losin faith in life, but I know that one day its surely 100% curable.
I must suggest everyone to see this flick and understand that relations matter utmost.
Yours
Bhavya
Send your doing's to aware.cancer@gmail.comLabels: Cancer, Film, My Sister's Keeper, Relations |
posted by Bhavya @ 6:12 AM   |
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| Monday, December 27, 2010 |
| Pallium India's Newsletter -1 |
From ths week, we share you the Pallium India Newsletter, its an efforts to aware more about the ongoings.
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December 2010 Newsletter
A Carer, Your Support and Forgiveness
Last week, “Suma” committed suicide.
Suma (not her real name) was a 26 year old postgraduate diploma holder in computer science, but had been unable to go to work because she had to care for her mother in their precarious thatched hut, perched on a strip of land that, according to Government records, did not belong to them.
Suma had given up her life to look after the mother. If there was a support system to help care for people like her mother, Suma could have had a good career, built a life and still looked after her mother. But it was not to be. The medical system bled the family and forced them into abject poverty. Neighbours found the mother dead, with Suma hanging right above her.
We palliative care workers are too often overwhelmed by stories like this. We reach them too late, or when we do, our support is nowhere near enough. And, not infrequently, we are forced to reject people who need us most, because they live too far away or simply because their social or other problems are beyond our ability to solve. Some of us burn out, unable to cope with the suffering. Some of us go on, because so many of you out there wish us well and support us.
This Christmas season, we share our pain with all of you for feeling so impotent that we were not able to support Suma and her mother enough.
Suma, you lived a brave and meaningful life while it lasted. We pray for your forgiveness for not being supportive enough.
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Palliative Care Workshop at Rajiv Gandhi Cancer Centre
One of the greatest failures of the Indian palliative care scene is poor integration into routine health care.
The little palliative care that is in the country, is too often limited to end of life situations, so that patients often have to go through a lot of suffering during months or years of potentially curative treatment. But things are changing, though slowly.
Rajiv Gandhi Cancer Centre at New Delhi has been having a home visit program for a long time and is now seriously considering integration of palliative care into their routine services.
(Dr Dewan addressing the workshop, above.)
As a first step, on December 10th 2010, they organised a one-day workshop on palliative care, which Pallium India had the privilege of participating in.
Mrs Jyotsna Govil, one of the founders, and Dr Dewan, Medical Director, were the chief organizers.
Their enthusiasm was infectious, and we look forward to working with them on their noble mission.
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CanSupport 10th Annual Foundation Course in Palliative Care
Dr. Ambika Rajvanshi, Director of Home Care at CanSupport sends us an invite from CanSupport and Institute Rotary Cancer Hospital, AIIMS to their:
10th Annual Foundation Course in Palliative Care
21-23 January, 2011 at India International Centre, New Delhi
Course Objectives
To introduce the principles of palliative care to a multi-disciplinary group of doctors, nurses, counselors, social workers and volunteers
To equip participants with knowledge and skills to improve pain and symptom control of patients under their care at home, hospital or hospice
To enable participants to improve their communication skills and handle difficult issues, such as breaking bad news and coping with loss and grief
To demonstrate the need and viability of multi-disciplinary team approach in providing palliative care to patients
Course Details
The course is a concentrated, multidisciplinary introduction to the growing specialty of palliative care. Although the focus is on patients with advanced cancer, the principles discussed are applicable to the care of all patients with life-limiting illnesses. It is a practical structured course aiming to tackle the subject of palliative care in the Indian context. Besides expert trainers from CanSupport and Institute Rotary Cancer Hospital, AIIMS, the faculty will consist of national and international experts in palliative care. (Delhi Medical Council accreditation of 19 CME hours)
Course Fee: Rs. 1000/-
Last date for registration: 10 January 2011 (Limited Seats)
Get full registration details on the CanSupport website…
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CanKids Capacity Building Workshop, New Delhi
CanKids, in association with INCTR and Pallium India, is held their 2nd Capacity Building Workshop in New Delhi recently.
CanKids 2nd Capacity Building Workshop for Pediatric Cancer Support Services & Pediatric Palliative Care – 14-17th December 2010, New Delhi, India
Trainers included:
Dr Anjay Babu Sadasivan, CanKids Pediatric Palliative Care Physician & Palliative care consultant – GCCI, New Delhi
Dr. Amita Mahajan, Senior consultant & Pediatric Oncologist – Apollo Hospital & CanKids Vice president, Technical
Dr Sindhu Nair, Oncologist and Palliative Care Physician, Global Cancer Concern India
and the CanKids Training Team
More information on the CanKids website…
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Access to Pain Relief is a Human Right
Please Sign the Declaration of Montréal
The International Association for Study of Pain (IASP) had organized a “Global Pain Summit” on 3 October 2010 at Montreal, Canada. The chairman of Pallium India was a member of its steering committee.
The summit had announced “The Montreal Declaration“, which has now been accepted by the IASP council. Essentially, the document declares access to pain relief as a human right, and spells out the components of that right.
You can view the declaration at the IASP website and sign the declaration either as an individual or on behalf of an organization.
Please support the cause by signing it.
It will take only a minute of your time!
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JCNC Health & Wellness Fair
Pallium India-USA was invited to participate in a Health and Wellness Fair at the Jain Center of Northern California, in Milpitas on 13th November 2010. The event was organised jointly with the South Asian Heart Center.
The topic was Palliative Care and Advance Health Care Directives for the US based South Asian population.
Quite a lot of people expressed interest with two pages of our guestbook filled with names of people who want to know more about Pallium India – many of them want to consider volunteering.
Many thanks, you wonderful people. Expect an email from us soon!
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Places Available for APHN Palliative Care Certificate at Flinders University
Ms Wei-Yee from Asia Pacific Hospice Network (APHN), writing on behalf of APHN Chair Dr Cynthia Goh:
The 2011 intake of the APHN Diploma/Graduate Certificate in Palliative Care of Flinders University still has vacancies.
The course fee for selected candidates from India will be at a subsidised rate of USD2,000.
The course application form and funding information can be downloaded from the APHN website…
Wei-Yee goes on to say that additional funding is also possible from Help the Hospices.
If you have questions, plesae contact Wei-Yee by email: aphn@aphn.org
See our previous blog entry on: APHN Diploma Of Palliative Care / Graduate Certificate In Palliative Care
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Pediatric Pain Master Class Scholarships
Dr Frank Ferris has informed us of a wonderful scholarship opportunity open to physicians from developing countries, offered by The Foundation of Children’s Hospitals and Clinics of Minnesota and Children’s Institute for Pain and Palliative Care (CIPPC).
Dr Ferris says, “Dr. Friedrichsdorf and his team are very committed to advancing pediatric palliative care in low and moderate resource countries.”
APPLICATION DEADLINE: JANUARY 15, 2011
Scholarships to applicants from developing countries for the Pediatric Pain Master Class, Minneapolis, MN, USA (June 11-17, 2011) plus a one-week clinical practicum (June 6-9, 2011) with the Pain and Palliative Care team. [PDF]
Funded by The Foundation of Children’s Hospitals and Clinics of Minnesota, the Children’s Institute for Pain and Palliative Care (CIPPC) is offering two competitive scholarships for physicians from developing countries currently working in the field of pediatric pain and/or palliative care.
The recipients of this scholarship will be selected based on leadership abilities, commitment to moving the field of pediatric pain and palliative care forward, and attending to underserved pediatric populations. The goal of this scholarship program is to identify medical professionals who are in a position to improve acute and chronic pain management for children both in their institution and beyond (region or country).
This 2-week International Scholarship includes:
Airfare to and from Minneapolis/St. Paul
Hotel accommodation and meals
1-week practicum with the Pain & Palliative Care Team at Children’s Hospitals and Clinics of Minnesota (June 6-9, 2011)
100% course tuition for the Pediatric Pain Master Class, Minneapolis, MN, USA (June 11-17, 2011)
Ongoing mentorship
Click here for full details & Application Guidelines… (PDF)
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Two out of three Brits want to die at home…
The DEMOS report, Dying for Change, finds that two out of three Britishers would prefer to die at home, but actually 60% of them die in hospital today. And that is in a country in which the concept of palliative care was born and bred and which is in the forefront in the international palliative care scene.
The report mentions that UK needs 500 billion pounds a year to provide sufficient support at home. Is that not a lot of money? It sure is, but think of the huge amount of money it will save from needless hospital costs!
Dying for Change
The institutionalised ways we cope with dying do not align with how most people aspire to die. Most people want to die with family and friends nearby, cared for, free from pain, with medical support available when needed. Yet most people will die in hospitals and care homes, often cut off from friends and family, dependent on systems and procedures that feel impersonal, over which they have little control and which too often offer them little dignity. We spend large sums of taxpayer’s money – at least £20 billion a year – on services that leave too many people feeling confused, frustrated and distressed too much of the time.
The UK should be able to provide people with better ways to die. The pamphlet argues for improvements to existing services: making end of life advance care plans the norm; training more in the medical profession in palliative care; and more greatly integrating the care services provided by the public, private and voluntary sectors. It also suggests radical innovations: a new infrastructure of home hospices, the creation of a compassionate care benefit and a properly trained volunteer support network providing palliative care – a perfect opportunity for the Big Society. The challenge is to help people to achieve what is most important to them at the end of life. Dying for Change describes how that challenge can be overcome.
When we consider developing countries like India, even if the health care system does not care about the feelings of dying people and their families, it should at least consider the reduction in health care costs!
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Palliative Care at the 30th India International Trade Fair 2010
Volunteer palliative care group, Delhites’ National Initiative in Palliative Care (DNipCare), has been exhibiting at the India International Trade Fair 2010 in the Health Ministry pavillion.
The 30th India International Trade Fair is being held at Pragati Maidan, New Delhi and runs from 14-27 November, 2010 – more information here…
From the DNipCare blog:
Shri Ghulam Nabi Azad, Honourable Union Minister for Health & Family Welfare appreciated DNipCare by his jotting down in the Visitor’s book, “I am extremely happy the way DNipCare is providing home to home service. I wish the organization best of luck”.
It is the first time in the history of India International Trade Fair that Palliative Care concept has been given a chance to propagate to the masses. We are grateful to the Ministry of Health & Family Welfare and also to all our wellwishers who encouraged us in our mission for the ailing patients.
– Visit the DNipCare blog for more pictures…
Congratulations, DNipCare! And thank you Mr Suresh Thaliyaril for sending the information to us.
We’ve blogged about DNipCare before: Indian Express: Weekend Visits
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Institute of Palliative Medicine: WHO Collaborating Centre
Dr Suresh Kumar, Director of the Institute of Palliative Medicine (Calicut) informs us of a new designation from the World Health Organization:
Dear All, Happy to inform you that Institute of Palliative Medicine has been designated as a World Health Organization Collaborating Center (WHOCC) in Palliative Care. IPM becomes the fifth WHOCC in Palliative Care in the World and the first one in the Developing world. We hope that this important designation to a center in India can be used to strengthen the evolving national palliative care initiative in the country.
Regards,Dr Suresh KumarDirector, WHO Collaborating Center for Community Participation in Palliative Care and Long Term Care
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HIV/AIDS, India and Our Collective Conscience
Do you see a scar going round the neck?
That scar should be on our collective conscience.
“Ramesh” (not his real name) is just 25. The industrialization of our brave new India drove him from his agricultural land in rural Karnataka and made him a truck driver. When he got pain in his tummy and eventually was given a diagnosis of HIV, that world rejected him. Pain, HIV and the rejection together forced him to try to hang himself. “I did not succeed even in that,” he says ruefully.
How many thousands of desperate men in every state in India are like him, in pain and suffering, rejected by the medical system and the society?
Enormous advances have been made in India in developing a care system for those with HIV, but that system does not yet embrace pain relief or palliative care.
“Ramesh” is one of a small minority of people with HIV and pain who get care and pain relief. He has been taken in by Asha Jyoti, a care centre run by “Samraksha“ in Kushtagi, Northern Karnataka.
Over the last two months Pallium India has been collaborating with Samraksha to bring in routine pain assessment and symptom control as part of the routine care at Asha Jyoti.
There is a long way to go yet at Asha Jyoti, but a good beginning has been made, and an amazingly sincere team is doing a wonderful job.
But how long will it be before pain relief and palliative care become essential components of HIV care in India?
Watch more video testimonials on Samraksha’s Youtube channel which includes Paramesh’s on Asha Jyoti in Kushtagi.
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Sea of Poppies
The issue of opioid availability is such a huge concern for palliative care people that all their antennae go up when they hear the word ‘poppy’.
Well, you will not regret it if you pick up “Sea of Poppies” by Amitav Ghosh (Penguin Books, 2008) – a book short-listed for the Man Booker Prize in 2008.
Set on the Gangetic plains and the wide ocean during the days of the British Raj, it is indeed a masterpiece. Read it and it will take you inside the Opium and Alkaloid Factory in Ghazipur. And the poppy is indeed a major character in the book,
Like all the gifts that Nature gives us – fire, water and the rest – it [opium] demands to be used with the greatest care and caution.
Wise words indeed. We palliative care people in the developing world particularly need to remember this. In our enthusiasm to improve access to opioids, do we sometimes forget to ensure that it is stored, dispensed and monitored with caution?
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The Avastin Debate
One of the fundamental ethical principles of medical practice is “Justice” – the fair allocation of available resources. So, should the National Health Service of UK offer Avastin, a drug that can possibly prolong survival in cancer?
When the National Institute for Clinical Excellence (NICE) announced that it would not approve funding for Avastin, it set off a predictable firestorm of protests from concerned groups.
The Guardian points out that a rational discussion should take into consideration a recent report in the New England Journal of Medicine which showed that early access to palliative care improved survival by as much as three months in people with lung cancer.
It also showed that access to early palliative care increases the likelihood of people getting precisely what they want out of their final months and reduces suffering, depression and burden on their family at the same time enabling them to live longer.
Interesting, is it not, that despite this evidence, there are people to fight for Avastin, but not for the much less expensive option of early access to palliative care!
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New Section: Your Health
Pallium India is honoured to partner with American Cancer Society (ACS) in disseminating an excellent resource on cancer “prevention to palliation with an additional focus on their caregivers”.
The material, created by an expert ACS team of medical editors from India and the US under the guidance of a National Advisory Board (India), falls into two categories:
KEEP YOURSELF HEALTHYA series of documents about healthy behaviours and prevention & early detection for breast, cervix, and oral cancers and
IF YOU HAVE CANCERDocuments addressing common issues such as side affects, pain, lab tests, etc. that patients and their caregivers are concerned about when undergoing cancer treatment.
Access these precious documents FREE from our new ‘Your Health’ page…
The PDF files are available in English, Hindi and Gujarati. Please share them with your colleagues, friends and family.
If you have taken a good look at the WHO’s definition of palliative care, you would recollect that it includes “prevention of suffering”.
Why should we wait till a cancer has progressed to the incurable stage and then only provide tender loving care? Let us do what we can to prevent suffering.
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Medicated into Poverty
We have, on this blog, talked about the high costs of modern medical treatment and its impact on society.
The 2009 edition of the Oxford Textbook of Palliative Medicine says,
… a study in rural Kerala, South India, of those below the poverty line, the main reason for the poverty in nearly 30 percent of cases was the cost of medical treatment.
Well, India does not seem to have monopoly on the matter. The UK’s Independent newspaper reports in “Counting the cost of a drugs revolution” that Western medicines are making China’s ancient medical practices increasingly redundant, but their high price tag is also pushing millions further into poverty.
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A Beautiful Death – Facing the Future with Peace
Cheryl Eckl shares her poignant story in “A Beautiful Death – Facing the Future with Peace”, her book on facing death, grief and loss with confidence, peace and grace,
I wrote this book because I was moved to share what I learned from facing death.
In 2004 I was living a dream. I had been married to Stephen, the love of my life, for 14 years. But when he was diagnosed with terminal cancer, I suddenly found myself on an unexpected and unwelcome journey with no road map.
At first I did my best to keep him alive, to preserve our life together, to give us more time to love each other. When it became horribly clear that he was not going to make it, I had to change my focus from his survival to easing his pain and helping him through the dying process as authentically as he had lived.
A Beautiful Death is our story of love and loss, of learning and letting go, of my doing absolutely all I was capable of for the one I loved. And of believing that, while nothing could save him, everything I did could contribute to a better end.
I wrote this book to explain to myself what happened so I could bear to go on with my life alone. And I wrote it for you as proof that not only can you handle whatever challenges life sends you, but you can also become more present to life’s joys in the process.
Dying is something we will all do in this life, and it is likely to be difficult; but what matters is who we are being while we’re doing it. Stephen taught me that and that’s the story I fashioned from the journals I had kept during our 18 years together.
Throughout Stephen’s illness, I found that reading about how other people faced death gave me courage and confidence that I could walk up to that final doorway with my beloved. I hope that reading A Beautiful Death does the same for you.
Cheryl offers plenty of helpful advice on her blog…
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A Letter: Parent to Parent
Here is a letter from a parent who suffered prolonged pain and finally loss of a child – to any parent whose child has been given a difficult diagnosis or who has lost a child. The writer is Ms Dianne Gray of Elisabeth Kübler Ross Foundation.
Dear Parent,
First, my most sincere condolences on the diagnosis of your child.
Second, hold on to your to hat, your heart, your mind, and most of all, get ready for the ride of your life.
You will no longer see life as expendable, and you will never be able to go back to a time when the candles of a birthday cake mean looking forward with hope or with an eager anticipation of joyous beginnings.
I know because, like you, I was once the parent of a child who was newly diagnosed with an incurable disease. The most honest advice I can give is this: Let the dishes pile up in the sink (though mold is just plain gross) and let the fresh air in, because there is no time like the present to enjoy your child’s laughter and smell his or her skin. Kick your shoes off, eat popcorn in bed, then have a good hard cry. First for your child, then for yourself.
Honestly, not only is your child’s life ending, but your lifetime dreams have just been “put to sail”, so to speak. Feel sorry for yourself, because you deserve it. Then get up, and make the most of the incredible life lesson that you have just received. It’s called, “Life is Short.” You will never, ever, take a day or an hour with your child or any other loved one, for granted again.
Trust me, there are millions of drugs sold every day to people who are filled with a life lacking gratitude or an appreciation for those around them. You will not be in line for those, though at times you will feel like you need some sort of pharmaceutical assistance to get through the day. Shockingly, you probably will not need them because your drive to protect and love your child will act as a drug itself.
Most important, listen to your gut, your intuition. You know what I’m talking about. Some of you already knew before you were told by your child’s physician, that you were in deep, deep “doo-doo” as they say, when it came to the topic of your child’s health. On those days when you look into your child’s eyes, and you “know” something is wrong, listen. No one knows your child as well as you do. You have probably been “connected” way before the moment of his/her diagnosis, so trust your intuition and take seriously your role as your child’s advocate, mouthpiece, and protector.
Finally, remember that you are loved by a community that is by far larger than you can possibly imagine at this moment. The “club” of parents who have had sick kids is many and we are mighty. We may not carry on our backs a placard that says “mother of dying or dead child”, but we are there and we love you though we don’t know you. We are in line at the grocery store and the mall. We are in the elevator, at the gas station, and on airplanes sitting next to you. We ache for you and somehow, we know of your unspeakable burden.
Reach out for help sometimes when it seems completely ridiculous or terrifying to do so. You never know who will standing beside you. It may even be me.
Blessings as you continue your journey,Dianne Gray
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As We Close Out 2010…
No matter how much we read about suffering or watch other people suffering, it is only when we ourselves suffer that we know what pain is.
This Christmas season, let us take a pledge to be sensitive to the suffering of others.
Life does not require us to make good, it asks only that we give our best at each level of experience.
Wishing You All a Happy New Year. We Look Forward to Your Continued Support and Encouragement in 2011.
Thank you for reading & subscribing to our newsletter!Please share this with your colleagues & friends.Don't forget to check our blog and follow our Twitter @PalliumIndia.
Editorial Board: K Govindan Kutty, A Salahuddin Kunju, C Mohanan, Dr Michael Minton, Rakesh Menon & M R Rajagopal.
Please send us feedback about the newsletter here...
PALLIUM INDIA (A REGISTERED CHARITABLE TRUST) Address: II Floor, S.U.T. Speciality Hospital, Plamood, Trivandrum 695004, Kerala, India Phone: +91 471 244 0306 (office) & +91 938 729 6889 (mobile) Fax: +91 471 244 0306 Email: info@palliumindia.org Web: palliumindia.org
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Send your doing's to aware.cancer@gmail.comLabels: Cancer, Palliative Care, Pallium India |
| posted by Bhavya @ 12:14 PM |
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| Tuesday, October 13, 2009 |
| A way to help |
Hello All,
After returning from Global Cancer summit, I am much aware of the concern, world has. 'Cancer is Curable', this the motto. 26 Indian NGO's are there, they are working passionately for the cause.
This information is about one NGO, who is working from New Delhi.
Hope this works for betterment of the cause.
Aware Cancer
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INDIAN CANCER WINNERS’ ASSOCIATION
A mission to “Win over Cancer”
(A Unit of I Can Win Foundation) Regd. Office: D-10/54, Sec-7, Rohini, New Delhi– 110085
Tel: +9111-27933358. Email: http://in.mc952.mail.yahoo.com/mc/compose?to=icanwinassociation@gmail.com
http://www.icanwinassociation.blogspot.com/
http://www.winovercancer.com/
President : Dr Pawan Gupta M.Ch. Oncosurgeon; mob: 9811290152
Vision:
To change the way cancer is perceived by the society
Dear Winners',Greetings from Indian Cancer Winners' Association and best Wishes for the festive season ahead.With your help I CAN WIN Association has been able to change peoples' perception towards cancer. The associations endeavour to win over cancer creating awareness and early detection is possible only with your active participation.We are making more WINNERS, by changing lives helping in staying well with a positive spirit.I thank you on joining the campaign "WIN OVER CANCER",
I invite you for your comments and suggestions on our blogspotto keep this movement up and about
http://icanwinassociation.blogspot.com/search/label/ACTIVITIES
Just in case you are not already a member/friend/volunteer/donor, the form is attached for your ready utilization.
POSITIVE ABOUT LIFE - I CAN WINregardspawanDr Pawan Gupta MS, M.Ch, FSOG, FAISPresident Indian Cancer Winners' AssociationSr. Consultant Cancer Surgeon-- INDIAN
CANCER WINNERS ASSOCIATION“A mission to Win over Cancer ” (A Unit of I Can Win Foundation) Regd. Office: D-10/54, Sec-7, Rohini, New Delhi– 110085Tel: +9111-27933358. http://in.mc952.mail.yahoo.com/mc/compose?to=icanwinassociation@gmail.comhttp://www.icanwinassociation.blogspot.com/(Donations are exempt from Income Tax under Section 80G of the IT Act 1961)National Chapter:President:Dr Pawan Gupta M.Ch.Delhi 9811290152Vice President-Mr R.K.Goel MBA Ghaziabad 9810705342Dr Manish Wadhwa MD Faridabad 9811661298Secretary-Mr Suresh Prakash MBA Ghaziabad 9891948444 Faridabad Chapterhttp://icanwinassociation.blogspot.com/2009/07/i-can-win-faridabad-chapter-office.htmlPresident -Dr B.C.Gupta MD Faridabad 9810373490Secretary-Dr Prashant Gupta MD Palwal 9813389010 Moradabad ChapterPresident-Mr Yogendra Agarwal 9412244844Secretary-Mr J.S.Agarwal 09837050906Ghaziabad Chapter:President-Mrs Prabha Gupta 9650295190Secretary-Mr MAnish Goel 9999994737 Gurgoan Dr Amitabh Singh M.Ch. 9910302483
-- INDIAN CANCER WINNERS ASSOCIATION“A mission to Win over Cancer ” (A Unit of I Can Win Foundation) Regd. Office: D-10/54, Sec-7, Rohini, New Delhi– 110085Tel: +9111-27933358. http://in.mc952.mail.yahoo.com/mc/compose?to=icanwinassociation@gmail.comhttp://www.icanwinassociation.blogspot.com/(Donations are exempt from Income Tax under Section 80G of the IT Act 1961)National Chapter:President:Dr Pawan Gupta M.Ch.Delhi 9811290152Vice President-Mr R.K.Goel MBA Ghaziabad 9810705342Dr Manish Wadhwa MD Faridabad 9811661298Secretary-Mr Suresh Prakash MBA Ghaziabad 9891948444 Faridabad
Chapterhttp://icanwinassociation.blogspot.com/2009/07/i-can-win-faridabad-chapter-office.htmlPresident -Dr B.C.Gupta MD Faridabad 9810373490Secretary-Dr Prashant Gupta MD Palwal 9813389010 Moradabad ChapterPresident-Mr Yogendra Agarwal 9412244844Secretary-Mr J.S.Agarwal 09837050906Ghaziabad Chapter:President-Mrs Prabha Gupta 9650295190Secretary-Mr MAnish Goel 9999994737 Gurgoan Dr Amitabh Singh M.Ch. 9910302483
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Send your doing's to aware.cancer@gmail.comLabels: Cancer, NGO |
| posted by Bhavya @ 6:27 PM |
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| Friday, January 25, 2008 |
| Ketan's Writings on Cancer |
Hi All,
Pasted are series of articles on cancer and people dealing with them that I have written and were published in Times Of India
Regards
Ketan
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HOPE FLOATS
When They Say You’re Going To Die
What goes on inside the minds of people with terminal illnesses. Ketan Tanna goes that side
On Thursdays, 37-year-old Ankita Anil Gurav used to wake up at five in the morning. She had to be ahead in the queue for tokens issued by the outpatient department of the Tata Memorial Hospital in central Mumbai. The token enabled her only son, 12-year-old Aniket to get his dose of chemotherapy. Only 20 tokens were given every day and they were exhausted by 7:30 am, minutes after the counter opens.
Life had been tough for Ankita but some choices are easy to make. The Gurav family sold almost all its possessions for the treatment of the boy and were ready to sell the oneroom home if necessary. But they did not curse their fate. “We don’t feel angry with god. We know that our son has an uncertain span of life. God has given us life. He has his plans for us,” said Aniket’s father, Anil Gurav who gave up his job as a diamond polisher to spend more time with his ailing son.
A few weeks ago, the family had gathered at the Make A Wish Foundation to celebrate a simple moment of joy. The Foundation had gifted Aniket a 5-in-1 music system. The boy, with a cloth tied over his mouth to avoid infection, tinkered with his new gift, forgetting the intense pain that had impaired his sense of sight and speech. “I want to be a pilot once I grow up,” he said feebly. On January 2, Aniket died.
Death terrifies us all. But there are many who live with it as an immediate prospect. How do they deal with it? How do children, especially, deal with it?
Children are aware of the concept of death but somehow they isolate themselves from the fate and very often make deep future plans. That’s why, with great effort, seven-year-old Arjun Jalandhar Naik folds his fingers to make an imaginary pistol. Because of surgeries, Arjun can barely speak. “I want to be an inspector,” he mumbles. It has been four months since Arjun and his father have been uprooted from their home in Vasco, Goa to the sterile rooms of the Tata Memorial Hospital. “I can’t dictate terms to god. What he has planned for us has to have a meaning. It is important that we go through what he has planned,” says the boy’s father Jalandhar Naik. Arjun’s grandmother calls from Vasco and the kid asks his grandmother how she is in Konkani and reassures her that he is fine. His father begins to cry.
In the palliative care department of the hospital, scores of cancer patients await their turn with crumbled bits of paper and files. Vasant Kadam, who says he is 50, though his file says he is 45, can barely speak. He has throat cancer and every time he tries to speak, there is wheezing sound. A pipe is attached to a hole made in his throat. Kadam has to press a small button on the tube so that he can speak properly. “I know that I am very ill. But I am not blaming god. I am just asking him to give me some time so that I can see my daughters settled.”
The left eye of 62-year old Kabir was burnt during radiation and what is left of it is one deep hollow socket. The right eye just about functions. Endless rounds of treatment since 1995, when his eyeballs started getting enlarged, saw him down painkillers on a regular basis only to discover that the medicines were causing more damage. Radiation and chemotherapy followed. Kabir says he is not disheartened. “I try to live a normal life. The more you think of your difficulties, the more you are bound to feel miserable. All I can say to those who do not have illnessse or have been given disease free bodies is please don’t complicate your lives over trivial issues,” he says, smiling.
The head of Tata Palliative Care department Dr M A Muckaden says that the common thread that runs through most of the patients is their ability to meet life head on despite having a limited lifespan. “I’m amazed at how they cope with their life when I see other human beings crumble at small problems,” she says. TNN
THE PILOT WHO FLEW AWAY: Twelve-year-old Aniket, who had dreamt of flying, passed away on January 2
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Outstation cancer patients can put up here for free
Ketan class Tanna meets the man who has put his spare flat to good use.
Mumbai: Cancer is a cruel and expensive disease. It drains you physically and exhausts you financially. And for the thousands of families who travel to Mumbai for treatment, one of the most challenging hurdles is to find a cheap and safe place to stay while the patient is being treated. Which is why a threebedroom flat in Kandivli is like an answer to a prayer.
A few years ago, businessman Suresh Agarwal, 47, realised that accommodation for outstation families was a crying need. For the last two years, his spare flat in Kandivli’s Lokhandwala area has been hosting cancer patients and their relatives who have not been able to get accommodation at Tata Memorial Hospital or Hinduja Hospital.
On an average, four patients are allowed to stay in the flat for up to three months. The flat is furnished and has a proper kitchen where the patients or their family members can cook as well.The lodging is free, and all that is needed is a letter from the doctor treating the patient. So far, 45 patients have used this generous facility.
It’s not just free boarding that Agarwal provides. Last week, he organised a musical show called Amit Kumar Night that raised Rs 35 lakh for Hinduja Hospital. Around two years ago, another musical event called the Vinod Rathod Night had raised Rs 15 lakh for the hospital.
Agarwal, who runs a plastic factory in Daman, knows too well the havoc cancer can cause to family life. His younger brother Sushil, now 45, was diagnosed with lung cancer in 1987. His brother-in-law, too, developed lung cancer in 1992 and later the wife of his brother-in-law was diagnosed with ovarian cancer.
What followed were almost daily visits to Hinduja where he became friends with the doctors and the management of the hospital. Even after his brother and relatives recovered, Agarwal continued to visit the hospital. On one such round, he noticed a frail person sobbing in the waiting area. He found out that the man’s treatment had been stopped midway as he was unable to pay.
It was then that Agarwal decided that he had to do something. After consulting the management, Agarwal decided to create a corpus so that each time there was a needy patient, the corpus could be used. It has helped many patients.
The Agarwal family has its roots in Assam. Soon after Sushil was treated successfully, they started getting requests for help from cancer patients from that state. “An empty flat near my home spurred me into offering it free to needy cancer patients,’’ says Agarwal.
Dr Asha Kapadia, head of the oncology department at Hinduja Hospital, says, “I wish we had more people like him.’’ Suresh Agarwal can be contacted on 98200 65184.
ketan.tanna@timesgroup.com
WARM WELCOME: More than 40 patients have so far used the accommodation facility offered by Suresh Agarwal
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She helps them keep pain at bay
Ketan Tanna I TNN
Life is what one makes of it. Knocked by life’s hard lessons, some turn cynical and others simply crumble. Bandra resident Usha Nagpal, 68, had a good life with a caring husband, three children and four grand children. She assisted her financier husband till 2000, when he had a heart attack and decided to wind up the firm. After nursing her husband back to life, Usha found herself with plenty of time on her hands. Her children were grown and leading their own lives.
An opportunity to do something useful presented itself in 2004, when a friend told her that the Tata Memorial Hospital was looking for people to train as volunteers for palliative care, which is pain treatment administered to patients in the terminal stages whose cancer is no longer responsive to curative treatment. Usha enrolled.
But life had more complicated plans for her. Two days into the course in what seemed like an ironic stroke of fate, her husband Narain Nagpal was diagnosed with malignant prostrate cancer. Despite the worrying news, Usha persevered with the course, encouraged at every step by her children and husband. But since her husband needed her time and attention, she decided not to immediately join the hospital as a volunteer.
In the new year, Mohan Nagpal was better. Usha called up the hospital to ask if she was still wanted. Of course, was the answer. Ever since January 2005, Usha has been working with the palliative department, counselling patients and encouraging them to improve the quality of their lives. She talks to them about yoga, meditation, music therapy, group sharing and Reiki, all of which are available at the OPD on different days of the week. She also helps train family members in wound care and other symptom management.
Initially, Usha found the paediatric unit daunting. “It was heartbreaking to work there, more so because one had to deal with the parents of the children. What does one say to children who have not even seen life but have so many hopes and aspirations which in all probability will remain unfulfilled? What does one say to the parents whose children may never grow up?’’ she asks.
One case really hit her hard. A lower middle class mother who was in her late twenties was sent to the palliative care department. She knew she was dying. Her husband knew she was dying. But all she could think of was her two little children. In the last stages of her life, the young mother was forced to separate her children
and send them to two different families since her daily wage-earning husband would not be able to care for them on his own. “She sobbed bitterly while sending away her children but we knew and she knew that there was no other option,’’ recalls Usha. “It was a particularly difficult case and I can never forget the pain of that mother.’’ A few days after giving her children way, the woman died.
Such tragic cases only strengthen Usha’s resolve to continue working as a volunteer, and she continues to go to the hospital at least twice a week. “I will never leave the hospital,’’ she says quietly. “I want to keep at it as long as I am wanted.’’
(Usha Nagpal can be contacted on 9819588567)
AGAINST ALL ODDS: Usha Nagpal is a volunteer at Tata Memorial Hospital with patients in the terminal stages of
ketan.tanna@timesgroup.com
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Fruits, vegetables and a war against cancer
Ketan Tanna | TNN
Life was good for Shaila Bhagwat. Married to a senior executive, this teacher’s life was closely tied to her husband’s transferable job that took her to different corners of the country. But days after arriving in Mumbai in 1999, her husband was diagnosed with lymph node cancer.
During her husband’s treatment at Hinduja Hospital—which meant spending five hours there, five days a week, she came in touch with other cancer patients. What stood out was the fact that most of them, struggling as they were with radiation and chemotherapy, barely gave any importance to their diet. Eating right was the least of the worries among cancer patients, especially those who belonged to the poor and the middle classes. Moved by the suffering of those around her during her daily visit to Hinduja, Shaila decided that she wanted to do more with her life. She decided to help cancer patients with the aspect they ignored the most—diet.
“I had a standing job offer from a prestigious Mumbai school, but I did not want to be constrained by time. I was welloff. My two grownup daughters were also able to take care of themselves. My husband had recovered and I had plenty of time. That is how my journey began,” she says.
For the last eight years, Shaila, now 57, has been a familiar face at the radiation oncology department of Hinduja Hospital. Twice every week, she can be found in the waiting area, talking to patients, asking about their problems and guiding them. Her emphasis is on advising the patients on what they need to eat and how to make food an ally in fighting cancer.
Radiation and chemotherapy, not to mention a heavy dose of drugs, rob the patients of their energy, says Shaila. The desire to eat also vanishes. The body becomes weak and it takes a lot of effort to go through the drudgery of everyday life, she adds.
A postgraduate in microbiology, Shaila decided to fortify her knowledge in nutrition and enrolled herself in a course conducted by SNDT University. This was enhanced by voracious reading on the internet and extensive interaction with doctors and friends.
Though there is a general diet in place for cancer patients, Shaila often prepares more specific food charts. There are times when poor patients cannot afford to eat the recommended fruits or medicines. For such patients, an alternative is given.
In case of oral cancer, patients are advised on the right combination of daily liquid diet. There have been times when well-off patients overhear Shaila counselling the poor and they anonymously pay for the drugs and fruits needed by those who cannot afford them. Besides drugs and diet, daily exercises and yoga can heal the body faster, says Shaila.
Suman Jadhav, a 60-yearold who was recently diagnosed with cervical cancer, found hope in Shaila in the corridors of the hospital. Her daughter Lalita says the first few days were tough. “But Shailatai gave us time, guided us on what to eat, how to do yoga and how to cope with the disease. (Contact Shaila Bhagwat on 022 26058214)
ketan.tanna@timesgroup.com
A FRUITFUL LIFE: Shaila Bhagwat’s efforts give hope to many
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Ketan Tanna
Special Correspondent,
The Times Of India,
Mumbai.
Phone: 91-22-22735240
Mobile:91-9821034500
Email:ketan.tanna@timesgroup.com
or ketan@ketan.net
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Websites
Work: www.thetimesofindia.com
Personal: www.ketan.net
Send your doing's to aware.cancer@gmail.comLabels: Articles, Cancer, Ketan Tanna, TimesofIndia |
| posted by Cancer Awareness @ 4:37 PM |
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| Friday, January 11, 2008 |
| ACS Report on Global Cancer Death Rate |
Dear Friends,
I am transmitting it just in case it has not come to your attention. Below is the link to the Report:
http://www.cancer.org/docroot/NWS/content/NWS_1_1x_ACS_Report_Puts_Global_Cancer_Death_Rate_at_76_Million.asp
I consider that it has immense utility to effectively implement the advocacy of cancer control in your respective regions.
Also, please do consider its utility as a telecast brief or a press note in the local media to heighten the public awareness and to seek its support to your initiatives.
Your feedback regarding its coverage through the local media to the Society shall be much appreciated.
You are welcome to seek any clarification.
With best regards,
Dr. Rakesh
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Dr. Rakesh Gupta, MS, FAIS,
Consultant (India),
Cancer Control Strategies- Workplaces,
American Cancer Society,
B- 113, 10 B Scheme, Gopalpura Byepass,
Jaipur. Pin 302 018. India.
T & F). 91-141-2763135;
Mobile- 91-93516 24313
skype) dr.Rakeshgupta
FOR MORE INFORMATION, CONTACT:
Andrew Becker
American Cancer Society
Phone: 212-237-3899
Email: andrew.becker@cancer.org
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FOR RELEASE 12:01 AM ET
December 17, 2007
New American Cancer Society Report Predicts
Increase in Global Cancer Cases and Deaths
“Global Cancer Facts & Figures” Cites Increasing Tobacco Use, Adoption of Western Diets in Developing Countries Among Causes
ATLANTA, December 17, 2007—A new American Cancer Society report estimates that there will be more than 12 million new cancer cases and 7.6 million cancer deaths (about 20,000 cancer deaths per day) worldwide in 2007. The estimate comes from the inaugural edition of Global Cancer Facts & Figures, the latest addition to the American Cancer Society’s family of Facts & Figures publications. The report estimates that 5.4 million cancer cases and 2.9 million deaths (53%) will occur in economically developed countries, while 6.7 million cases and 4.7 million deaths (70%) will occur in economically developing countries. These projections were calculated by applying the International Agency for Research on Cancer (IARC) Globocan 2002 cancer incidence and mortality estimates to population demographic trends reported by the United Nations.
In economically developed countries, the three most commonly diagnosed cancers in men are prostate, lung, and colorectal cancer. Among women, they are breast, colorectal, and lung cancer. In contrast, the three most commonly diagnosed cancers in economically developing countries are cancers of the lung, stomach, and liver in men, and cancers of the breast, cervix uteri, and stomach in women. In both economically developed and developing countries, the three most common cancers are also the three leading causes of cancer death.
In developing countries, two of the three leading cancers in men (stomach and liver) and in women (cervix and stomach) are related to infection. Approximately 15 percent of all cancer cases worldwide are infection-related, with the percentage of cancers related to infection about three times higher in developing than in developed countries.
“The burden of cancer is increasing in developed countries as deaths from infectious diseases and childhood mortality decline and more people live to older ages when cancer most frequently occurs,” said Ahmedin Jemal, PhD, American Cancer Society epidemiologist and co-author of the report. “Developing countries are facing a ‘double burden’ as cancers due to infectious agents remain a problem while people are also increasingly adopting ‘western’ sedentary lifestyles with higher consumption of tobacco, saturated fat and calorie-dense foods, reduced physical activity, and changing reproductive patterns.”
The International Agency for Research on Cancer (IARC) estimates that in 2002 there were approximately 24.6 million people (2.46 crores) worldwide who had been diagnosed with cancer in the past five years. Survival rates for many cancers are lower in economically developing countries than in developed countries largely due to the unavailability or inaccessibility of early detection and treatment services. For example, the five-year breast cancer survival rate in the U.S. is approximately 81 percent but in Sub-Saharan Africa, it is only 32 percent.
Special Section: The Tobacco Pandemic
The publication includes a special section on tobacco, the leading preventable cause of death worldwide. An estimated five million people worldwide died from tobacco use in the year 2000. Of these deaths, about 30 percent (1.42 million) were due to cancer, with 850,000 lung cancer deaths (~60%) alone. Globally, tobacco was responsible for about 100 million deaths (10 crores) during the 20th century, and it is projected to kill more than 1 billion (100 crores) people in the 21st century, with the great majority of these deaths occurring in developing countries. The report notes that halting the rapid spread of tobacco consumption in developing countries is an urgent global health priority.
The World Health Organization (WHO) estimates that approximately 84 percent of the smokers in the world live in countries with a developing or transitional economy. In China alone, there are 350 million smokers, more than the entire population of the U.S.
If current smoking prevalence patterns continue, there will be two billion smokers worldwide by the year 2030, half of whom will die of smoking-related diseases.
The American Cancer Society is dedicated to eliminating cancer as a major health problem by saving lives, diminishing suffering and preventing cancer through research, education, advocacy and service. Founded in 1913 and with national headquarters in Atlanta, the Society has 13 regional Divisions and local offices in 3,400 communities, involving millions of volunteers across the United States. For more information anytime, call toll free 1-800-ACS-2345 or visit www.cancer.org.
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Send your doing's to aware.cancer@gmail.comLabels: ACS, Cancer, DEATH |
| posted by Bhavya @ 4:30 PM |
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| Saturday, November 3, 2007 |
| The final days of Kevi... |
A concern social activist Ningreichon was the last person who was near Kevi. She is a young activist based in delhi. She is also from Nagaland. This account was written by her. Its a story of Kevi. Her last days, her smile and her final fate.....
These lines tell the spirit of Kevi...
("She added how the doctors are still contemplating her case because they are 'afraid' to operate on her "they are scared that I will not survive" and she laughs!)
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Friends
Thank you all for your concerns.
Sorry for takin time to let you all know what is with Kevis case.
The parents are also informed about you all and they send their greetings and wishes to you all who makes their burden lighter. The inhuman people around like those in Max "super speciality" hospital who are just the antithesis of what it claims "caring for you… caring for life"; the slogan they use that betrays many there are also people like you all who cares. We don't know who Kevi Angami is but humanity comes calling in the yet another form and this time in the face of kevi and for those of us who cannot tolerate atrocities and injustice kevi is seen in the faces of many; faces whose voices are silenced, faces who have been betrayed by systems they cannot fight against(corporates in this case!) May we never fail when such faces appears.
kevi is out of Max hospital but not without great humiliation. Some friends who happened to know the owner intervened. They did not charge the remaining amount other than the money that was paid(1,35000) . The fact that these friends are lawyers helped immensely and my assumption is that one strong point that speaks of the grave injustice meted to kevi which is legally and ethically wrong was the fact that max hospital stopped her medication for 2 weeks yet did not let her go. They were not treating her but just adding on to her pain and the medical bills. A hello in Max and the likes cost 500 and euphemistically they call it 'consultation fee'. Consultation when the patient nor the parents were informed about what all is happening. I am not able to put what all they went through. It just drives ones mad just listening to their story. The soft spoken and tired father narrates what the admin head said 'if you are poor why did you come to such a place'. The father said he was so hurt and it only goes on to say nothing can put some sense into such people but I am happy that the father said ' some people love money, some people love life'….. May the woman and the band of criminals learn that life is not just about money and making money.
The endless hours of paperwork went on till sunday morning. We were told that AIIMs would not admit the case so the option was to go to some private hospital after making some rounds mahinder in green park said they will admit her. kevi was taken around 3am there but after they saw her condition they refused to take her in. This is despite the fact that they were told about the case beforehand.
At that wee hour options were running out..but but even if the door is closed the window is wide open..wider than the door.
We woke a doctor friend who works in safdarjung hospital. kevi was admitted in the same hospital Sunday morning at around 5.00. She had a colostomy the following evening. It is not a beautiful sight and she is in pain but
Medically it is a 'hopeless' case but she has not given up hope. Every ounce left in her is defying and fighting against medical proclamation.
While she was kept waiting in the hospi she called her fren to tell her that she is now in safdarjung and that she hands over 'the money' to her mother the next day because they have no money. She added how the doctors are still contemplating her case because they are 'afraid' to operate on her "they are scared that I will not survive" and she laughs!
She is the 25 year old Kevi Angami who is too strong for wimps in max hospital to handle.
PS:YOu can write to her as well and I can take a print out and pass it on to her. May she be comforted knowing that all of you are with her
chon
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" I am the escaped one, after I was born they locked me up inside me but I left. My soul seeks me, through hills and valley, I hope my soul never finds me." Fernando Pessoa
Send your doing's to aware.cancer@gmail.comLabels: Cancer, India, Kevi Angami |
| posted by Bhavya @ 7:50 PM |
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| Tuesday, July 31, 2007 |
| In U.S., many cancer patients get lost in a maze of uneven care |
Sunday, July 29, 2007
Karen Pasqualetto had just given birth to her first child last July when doctors discovered she had colon cancer. She was only 35, and the disease had already spread to her liver. The months she had hoped to spend getting to know her new daughter were hijacked by illness, fear and a desperate quest to survive. For the past year, she and her relatives have felt lost, fending for themselves in a daunting medical landscape in which they struggle to make sense of conflicting advice as they race against time in hopes of saving her life.
"It's patchwork, and frustrating that there's not one person taking care of me who I can look to as my champion," Pasqualetto said recently in a telephone interview from her home near Seattle. "I don't feel I have a doctor who is looking out for my care. My oncologist is terrific, but he's an oncologist. The surgeon seems terrific, but I found him through my own diligence. I have no confidence in the system."
It was a sudden immersion in the scalding realities of life with cancer. This year, there will be more than 1.4 million new cases of cancer in the United States, and 559,650 deaths. Only heart disease kills more people.
Cancer, more than almost any other disease, can be overwhelmingly complicated to treat. Patients are often stunned to learn that they will need not just one doctor, but at least three: a surgeon and specialists in radiation and chemotherapy. Diagnosis and treatment require a seemingly endless stream of appointments. Doctors do not always agree, and patients may find that at the worst time in their lives, when they are ill, frightened and most vulnerable, they also have to seek second opinions on biopsies and therapy, fight with insurers and sort out complex treatment options.
The decisions can be agonizing, in part because the quality of cancer care varies among doctors and hospitals, and it is difficult for even the most educated patients to be sure they are receiving the best treatment. "Let the buyer beware" is harsh advice to give a cancer patient, but it often applies. Excellent care is out there, but people are often on their own to find it. Patients are told they must be their own advocates, but few know where to begin.
"Here it is, a country with such a great health system, with so many different breakthroughs in treatment, but even though we know things that work, not everybody who could benefit gets them," said Dr. Nina Bickell, an associate professor of health policy and medicine at the Mount Sinai medical school in New York.
Death rates from cancer have been dropping for about 15 years in the United States, but experts say far too many patients receive inferior care. Mistakes in care can be fatal with this disease, and yet some people do not receive enough treatment, while others receive too much or the wrong kind.
"It's quite surprising, but the quality of cancer care in America varies dramatically," said Dr. Stephen Edge, the chairman of surgery at the Roswell Park Cancer Institute in Buffalo. "It's scary how much variation there is."
Government and medical groups acknowledge that the quality of care is uneven. In 1999, a report by the Institute of Medicine in Washington said, "For many Americans with cancer, there is a wide gulf between what could be construed as the ideal and the reality of their experience with cancer care." The institute noted that there was no national system to provide consistent quality.
In March, cancer organizations tried to address the problem by issuing the first set of quality measures that can be used to judge whether hospitals are giving patients up-to-date care for breast and colon tumors, two of the most common cancers.
The list of measures calls for treatments that seem so basic even to a layperson that it is shocking to think any hospital would skip them. For instance, it says that women under 70 who have lumpectomies for breast cancer should also have radiation, and that doctors should consider chemotherapy for people with colon cancer that has spread to their lymph nodes.
Edge, who worked on the measures, said, "While they're fairly simple and straightforward, and they seem very basic, it's quite surprising how many people do not get the care that's recommended."
Treatment guidelines approved by experts already exist for 70 to 80 types of cancer (http://www.nccn.org/), but the new measures are the first to be formally endorsed by cancer organizations to assess whether hospitals are performing up to par. The measures were developed by the American College of Surgeons' Commission on Cancer, the American Society of Clinical Oncology and the National Comprehensive Cancer Network, and are available online at www.facs.org/cancer/qualitymeasures.html.
It took more than two years, Edge said, before experts even agreed on these basic principles. The first goal is to give doctors and hospitals a chance to see how they stack up to national standards. Eventually, the measures may be used by regulators and payers, including Medicare, he said.
First Sign of Trouble
Karen Pasqualetto is slight and dark-haired, with a soft voice that belies how tough she is. After giving birth by Caesarean section last July, she noticed a lump under her ribs. It was the size and shape of a banana. Doctors noticed it but did nothing. She was sent home and was told it was probably a bruise. Within a week she was back in the hospital, terribly ill — swollen with fluid, vomiting, so anemic she needed a transfusion and suffering from severe abdominal pain. Tests found colon cancer that had already spread, or metastasized, to her liver — stage 4, the final chapter of the disease.
"The doctor came in with a tear in his eye," she recalled. " 'It's bad.' Those were his exact words. 'You have maybe six months.' "
Surgery was not recommended because the liver tumors were too extensive. She was referred to an oncologist, who offered "palliative" chemotherapy, given strictly to ease symptoms, not to try for a cure.
"His attitude was that it wouldn't really make a difference," Pasqualetto said.
Palliative treatment was all her health plan would cover. But she had read enough about the disease to know that the proposed regimen did not include the full program of drugs typically recommended for stage 4.
Look for other opinions, her family urged. Her husband had a new job that provided better health coverage, and they switched to a different insurer.
"I think I'd be dead if I'd stayed with the first provider," she said.
Pasqualetto, a self-described Type A go-getter, knew better than most how to find information. She has a law degree and worked for several technology start-ups. She had made enough money to quit that career and do something she loved, teaching sixth grade at a Catholic school in Seattle.
She rejected the first oncologist after one visit and consulted the well regarded Seattle Cancer Care Alliance and Swedish Cancer Institute. Both recommended aggressive chemotherapy. Surgery might be possible, they said, if the drugs would shrink the tumors enough. She chose an oncologist at the Swedish institute Dr. Philip Gold, who brushed aside her six-month death sentence and assured her that people with stage 4 colon cancer could live three to four times that long.
"His message to me as a patient was, 'I have a lot of tricks up my sleeve, this is what we start with, and if it doesn't work I have this, and then I have a clinical study,' " Pasqualetto said. "The feeling I got was, there was hope, and a plan of attack."
Eleven months later, after 22 courses of treatment, she gave Dr. Gold credit for keeping her alive and giving her extra time with her daughter, Isabel.
Location, Location, Location
Where patients are treated can make all the difference. Some doctors and hospitals may not see enough cases to stay sharp, especially when it comes to rarer kinds of tumors, complicated operations or advanced stages of the disease — all areas in which studies have shown that experience counts. This factor may leave people in rural areas or smaller cities, and poor people, at a distinct disadvantage.
Communication also plays a crucial part: some patients may not understand that surgery alone is not enough and that they also need chemotherapy or radiation or both.
Even when treatment guidelines are based on solid evidence, hospitals or doctors may not stick to them. But sometimes, the science is not clear, and experts do not agree on the best course — or even on whether there is a best course.
"In cancer, there is frequently no one best doctor and no one best treatment," said Dr. John H. Glick of the Abramson Cancer Center at the University of Pennsylvania.
When patients consult him for second opinions or to transfer their care to his center, Dr. Glick estimated that he and his colleagues concur completely with the original doctor in about 30 percent of cases. But in another 30 to 40 percent of cases, they recommend major changes in the treatment plan, like a totally different chemotherapy regimen or the addition of radiation. Sometimes his team makes a completely different diagnosis.
In about another 30 percent of cases, his team recommends minor changes in chemotherapy, or additional tests. "We interpret things differently, maybe because we have more experience," Dr. Glick said. "We see hundreds of patients with Hodgkin's disease. A community oncologist may see only a couple."
Warning Signs Overlooked
Looking back, Karen Pasqualetto thinks she had cancer symptoms that were dismissed by doctors in 2003 or 2004 — at least two years before the disease became horribly obvious. She noticed blood in her stool, a classic warning sign of colon cancer. But it lasted only a few days, and such bleeding can also be caused by minor ailments like hemorrhoids. Many doctors do not even think of colon cancer in a young person with no family history of the disease, and her doctor said anal fissures had probably caused the bleeding. There is no way now to know whether that was correct. No sigmoidoscopy or colonoscopy was done to examine the inside of her colon or rectum. Other warning signs were also missed or ignored: anemia and blood in her stools during pregnancy and in the hospital after giving birth .
Ninety percent of colorectal cancers occur in people 50 and older — the reason screening generally starts at 50 — but that still leaves more than 15,000 new cases a year in younger people, some of whom have no symptoms.
The sad paradox of colon cancer is that it is often preventable — but not prevented. It is one of only two cancers (the other is cervical) for which screening tests can find cancers or precancerous growths early enough to cure the disease or even prevent it with surgery alone.
Only 39 percent of colon cancers are detected early. The disease is still the second leading cause of cancer death in the United States (lung cancer is first), with about 154,000 new cases and 52,000 deaths expected this year.
Doctors say the main reason the death toll remains so high is that not enough people are screened. Screening is unpleasant: it requires stool tests or scopes inserted into the rectum. It should start at age 50 for most people, earlier for those with risk factors like a family history of colon cancer. But many people refuse the tests or put them off. Some cannot afford colonoscopy, which costs $2,000 to $4,000; not all insurers cover it, even for people over 50.
Whatever the reason, only about half of those who should be tested actually are. Deaths could be cut in half, experts say — meaning 26,000 lives a year could be saved — if all those who need screening were to receive it. It is possible that screening tests have saved President George W. Bush from developing cancer. He has had colon polyps removed on several occasions, including last Saturday, when five were snipped out. Most polyps do not become malignant, but they are removed when found because nearly every colon cancer starts out as a polyp.
Screening has no advocate like a patient who has been through it all — surgery, radiation and chemotherapy, or slash, burn and poison, as some people call it — for a tumor that might have been easily cured if it had only been found sooner.
"If people knew what they had to go through with colorectal cancer, they wouldn't hesitate to have this silly little colonoscopy," said Rebecca Michalovic, who has rectal cancer that was diagnosed in 2003. Michalovic, 60, has had the works: radiation, three operations and a half-dozen ferocious drugs. Despite it all, the cancer has spread to her lungs. Even so, she continues to work full time as a counselor and administrator at Daemen College in Amherst, New York But one drug after another has stopped working, and she is down to the last two. She was 56 and had always been healthy when the disease was diagnosed, after she noticed a bit of rectal bleeding. She had never been checked for colorectal cancer.
"I should have done it," Michalovic said.
Elation and Then a Setback
One aspect of Karen Pasqualetto's care has particularly troubled her. She was told that the first few months of chemotherapy had shrunk the liver tumors enough to make them operable, and surgery was scheduled for last January. She was elated, figuring that removal of the tumors was her best shot at staying alive. But in December a hospital review panel known as the tumor board refused to approve the surgery.
"I was adamantly told it was off the table, and I don't know why," Pasqualetto said. Even she, the feisty patient, felt powerless.
"Who is this tumor board, and do they hold the keys to my life?" she asked.
"You feel a total lack of control when you're in a position like mine," she said.
Her oncologist, Dr. Gold, who is chairman of the tumor board, said it was a group of doctors who met informally to review cases and decide what treatment would help a patient most. In Pasqualetto's case, the board thought chemotherapy would accomplish more than surgery.
"Patients don't always hear what you're telling them," Gold said.
The decision haunts Pasqualetto because it soon became clear that her tumors had been at their smallest in January. By March, they were growing again, defying the chemotherapy. She feared she might have lost her best chance.
In May, she said: "I didn't even think I'd make it to today. The baby is starting to talk. I feel happy to be here for that moment. Next thing, maybe I'll get to see her walk."
Last month, she watched her daughter take her first steps.
But she had a severe allergic reaction to a new cancer drug in which she had placed a great deal of hope. With that reaction, another opportunity was gone. It was a huge setback.
The same day she had the reaction, a surgeon who had reviewed her case said he thought he could help her.
"It was almost like life and death in one day," she said. "I know my chances are dwindling."
The surgeon was Dr. Michael Choti, at Johns Hopkins, whom her sister had found through a patients' advocacy group, the Colon Cancer Alliance. He specializes in colon cancer that has spread to the liver. Though the surgery would be difficult and more than one operation might be needed, he told her that she seemed young and strong enough to withstand it.
She was torn. Her oncologist in Seattle hinted that it might be too late to operate, and that surgery could even make matters worse by spreading tumor cells around inside her body. She trusted him, and the thought of leaving his care frightened her.
But she clung to the hope of becoming "cancer free," and though surgery offered only a slim chance of that, she believed it was her only chance.
"It would almost be easier if there was somebody telling me what to do," she said. "But there's nobody saying, 'This is what you should do.' "
Missing the Right Treatment
Studies suggest that significant numbers of patients miss out on cancer treatments that could prevent recurrence, prolong survival or save their lives.
Among women with breast cancer, 15 to 25 percent who should have radiation do not receive it, and 20 to 30 percent do not take the anti-estrogen drugs that are a mainstay for most patients, Dr. Edge said.
Women miss out for various reasons.
"Because they don't get referred to the right doctor," he said. "Or the doctor doesn't explain things well and they get afraid of side effects. Or they don't have insurance and the drug costs $200 a month."
Race and ethnicity come into play in ways that are not understood. A study published last year in the Journal of Clinical Oncology by Dr. Bickell and other researchers assessed how likely a woman who had surgery for breast cancer was to miss out on other needed treatments — drugs or radiation — at several high-quality teaching hospitals. If she was white, she had a 1 in 6 chance of failing to receive the treatment; black, 1 in 3; and Hispanic, 1 in 4.
A second study published last month by the same group suggested that breakdowns in communication played a part: a third who did not receive the recommended treatment had refused it, and another third missed out because of "system failures," meaning it was recommended but, for some reason, never happened (and in another third, doctors ruled out the treatment for medical reasons).
With pancreatic cancer, one of the deadliest types, people at early stages have a chance of surviving only if they have surgery. But a study released in June by the American College of Surgeons found that 38 percent of patients who were eligible for surgery were not even offered it.
With ovarian cancer, a deadly disease for which inadequate surgery has been proved to shorten a woman's life, many do not receive the correct operation, which may require the removal of tumors from the intestine, diaphragm, liver, spleen and bladder.
"A third of the women in the United States are not getting the right surgery, not even close," said Dr. Barbara Goff, a gynecologic oncologist at the University of Washington in Seattle. "We have so many resources, but we still do so poorly with ovarian cancer."
For complex operations, numerous studies have shown higher success rates if the hospital and doctor have a lot of experience. But Dr. Goff and other researchers have found that 25 percent of ovarian cancer patients are operated on by surgeons who see only one case a year, and 33 percent in hospitals that treat fewer than 10 cases a year. Too many women are operated on by gynecologists or general surgeons, Dr. Goff said, adding that ovarian cancer operations should be done by gynecologic oncologists, who train specifically in cancer surgery. But she also said that many women do not know what kind of surgeon they need, or they cannot get to that surgeon.
In addition, although a major study in 2006 showed that pumping chemotherapy directly into the abdomen, instead of dripping it into a vein, added an average of 16 months to women's lives and the National Cancer Institute endorsed the technique, some oncologists still do not offer it.
Uneven quality persists even in colon cancer, one of the most common types. Dr. Jane Weeks, a professor of medicine at Harvard, said half a dozen studies had found that in stage 3, when tumor cells have spread to lymph nodes, only about 65 percent of patients are given chemotherapy — even though it has been proved beneficial and is recommended for about 80 percent of patients.
Numerous studies have suggested that men with prostate cancer face the opposite problem — too much treatment, which wastes resources and money and needlessly subjects men to the pain and risks of surgery or radiation.
Prostate cancer, particularly in older men, often grows so slowly that men can be treated with "watchful waiting," which means monitoring the cancer and treating it only if it starts to grow rapidly or turns more aggressive.
But a study last year of records of men treated from 2000 to 2002 found that among 24,405 with cancers considered to be of relatively low risk, 10 percent were overtreated with radical surgery, and 45 percent with radiation.
The surgeon's expertise is crucial in prostate cancer. A study published this month in The Journal of the National Cancer Institute found that the cancer was less likely to come back in patients whose doctors had performed 250 or more operations. Their recurrence rate was 10.7 percent, compared with 17.9 percent in men whose doctors had performed the operation only 10 times.
A Plan for Action
On June 17, a Sunday, Karen Pasqualetto, her husband and Isabel caught a red-eye flight to Baltimore. Pasqualetto made a point of bringing Isabel, 11 months, to her first appointment with Dr. Choti, hoping that the baby's blue eyes and cheerful grin would remind him just how high the stakes were and inspire him to try even harder to save her.
She emerged from the meeting a bit wistful. Though Dr. Choti had not criticized her previous care, he did say he would have operated much sooner, after a few months of chemotherapy.
In an interview, Dr. Choti said that Pasqualetto was a borderline case because the liver tumors were so extensive, and he could understand why the doctors in Seattle had decided not to operate.
Laughing as Isabel tottered around a hotel room in Baltimore, Pasqualetto looked so healthy it was hard to believe she was not. Only her stubbled scalp, mostly hidden by a bright pink ball cap, gave her away.
"I have fears about dying and about getting sicker, but I don't explore them, except maybe 10 percent of the time," she said. "The rest of the time, I just think it will all work out. I don't know what that really means."
If all the tumors could be removed, she might not even need more chemotherapy.
"Think of what a perspective I'd have on life," she said. "I don't allow myself to go there."
'A Complex Operation'
"They got them all," Pasqualetto's husband, Chris Hartinger, said shortly after her operation ended on June 21. "It turned out to be five tumors."
Four were in her liver. The one in her colon was the size of a tangerine. Dr. Choti operated for eight hours, removing 12 to 18 inches of intestine and about 70 percent of her liver.
The day after surgery, Dr. Choti said, "I think we got away with quite a complex operation."
The tumors were gone, but metastatic disease can be tough to beat in the long run.
"Roughly a third of patients will remain cancer free for a long time," Dr. Choti said. "About half will still be alive after five years. In a minority, there's a long-term cure. In some, we turn it into a chronic disease, if you will. She may recur, and we might be able to reoperate. We can prolong survival significantly."
A few days after surgery, Pasqualetto was walking laps around the hospital corridors, thinking about things she had not allowed herself to consider, plans she had not dared to make, like whether Isabel would someday like to have a horse.
"I can't believe it," she said. "This is pretty exciting."
But weeks later, at home again, she found herself back in the trenches, unsure of what the next step in her care would be. Her oncologist refused to see her until he spoke with the surgeon, and yet neither of them had called the other. Meanwhile, she was trying to decipher a worrisome report indicating that a CT scan had found minute lesions on her spleen.
"It's like I'm flapping in the wind," she said.
Far From Typical
Karen Pasqualetto is exceptional not only for her determination and confidence in dealing with problems that would intimidate many other people, but also for her financial wherewithal. So far her treatment has cost more than $400,000, almost all of it covered by health insurance from Starbucks, where her husband works in disaster-response planning.
When she joined a cancer support group, she recalled, "It was amazing to me the different experiences people were having based on what they could afford or who their provider was. I was able to say, 'If the provider won't pay, my family will. I don't care, I'm going for a second opinion.' "
In the support group, it saddened her to hear other patients with advanced disease take the word of a single oncologist, because she believes that if she had done that, she would already be dead. She has come to think that survival may depend on money and access, and, she said, on "your own drive and motivation — are you Type A? — your education and your ability to sort through the medical world and the insurance world terminology."
Pasqualetto's doctors have accepted her insurance payments, but if they had not, she said, "I would find resources. I would get people to pay. I do have resources. I have access to people who wouldn't sit by and let me die because of $200,000."
By Denise Grady
http://www.iht.com/
Send your doing's to aware.cancer@gmail.comLabels: Cancer, US |
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