Viewpoint | August 28, 2013  (from The Journal of Medicine)

Overdiagnosis and Overtreatment in Cancer:  An Opportunity for Improvement

Laura J. Esserman, MD, MBA¹; Ian M. Thompson, Jr, MD²; Brian Reid, MD, PhD³

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Over the past 30 years, awareness and screening have led to an emphasis on early diagnosis of cancer. Although the goals of these efforts were to reduce the rate of late-stage disease and decrease cancer mortality, secular trends and clinical trials suggest that these goals have not been met; national data demonstrate significant increases in early-stage disease, without a proportional decline in later-stage disease. What has emerged has been an appreciation of the complexity of the pathologic condition called cancer.

The word “cancer” often invokes the specter of an inexorably lethal process; however, cancers are heterogeneous and can follow multiple paths, not all of which progress to metastases and death, and include indolent disease that causes no harm during the patient’s lifetime. Better biology alone can explain better outcomes. Although this complexity complicates the goal of early diagnosis, its recognition provides an opportunity to adapt cancer screening with a focus on identifying and treating those conditions most likely associated with morbidity and mortality.  Read more…..in “Recent Articles”

      It has been approximately a year since I started this website/blog and it continues to be a work in progress.   This website/blog was produced with much thought, time and effort with the goal of helping and generating awareness among cancer patients and their families.  There are still sections that need to be developed, and in recent months I had to put it aside for personal reasons, but now I am back and moving ahead.  For the most part I am satisfied and proud with how this website/blog is evolving.

      Determined that no one should feel helpless and be paralyzed with fear regarding what to do and where to go for help, I created this site. Unfortunately both my parents succumbed to cancer and needlessly suffered.  In hindsight, if only I knew now what I didn’t know before their lives could have ended differently and more peacefully – but regrettably it is too late.   I learned a great deal and want to share my experiences of what my parent’s went through, particular for my mother since I was her caregiver. She passed away a year ago and it still seems like only yesterday. I want to help others, in similar situations, to benefit from my knowledge.

As it is, when one is given the diagnosis of cancer there is immediate shock, dismay, disappointment and disbelief.  I remember when our family learned that my mom had Stage 4 Lung Cancer, following my dad’s death the year before, a sort of paralysis set in my mind.  I couldn’t believe that after losing my dad, my mother was going to have to go through it as well.  All our family was scared.  There is a feeling of helplessness and depression – you want to do something, find the right answers, go only to the best doctors. There is a rush to do research, ask people what they know.  Time is ticking away and yet all the information seems overwhelming and you can’t absorb it all.

Supportive Care Exchange was established so cancer patients and their families will have a central place they can turn to – for resources, research articles, and personal stories.  I continue to do research and look for important up-to-date research and articles that I believe will be important for cancer patients.  The research I find comes from credible sources:  The Institute of Medicine (IOM), The Journal of American Medicine (JAMA), National Institutes of Health (NIH), cancer associations and newspapers reporting on the latest research and developments.

So many times I wish I found the articles sooner, then perhaps my parents would have had better quality of life at the end, with knowledge comes power.  At this point in time I can only help others from “being in the dark” and knowing all their options.  It amazes me how so many oncologists – including my own parent’s doctors – kept my parents “uninformed” and told them only what they felt was necessary.  They should have known what would have happened if they didn’t opt for treatment, since in their cases treatment only exacerbated their situation, and served no purpose.

For many cancer patients treatment is not always the best course of action.  As in my parent’s cases treatment was unnecessary and only caused great suffering at the end.   It is my belief that cancer treatment is not appropriate for the elderly (See my comments in The Forum regarding this).  The majority of people in the oncologist’s waiting room are elderly people (from what I experienced with my parents).  If the elderly decide not to continue treatment – there goes the oncologist’s income.  Cancer is a business and it’s all about revenue!  I sometimes wonder if a cure for cancer will ever be found because of this!

The viagra levitra cialis public deserves clean, continuous and affordable supply service. If you see specific untypical signs, the call to go to a physician at the cheap viagra from canada earliest opportunity. This will help the component to obtain the viagra tablet for sale medication without visiting a physician. For instance, there are foods canadian levitra which treat erectile dysfunction. I welcome others to share their own personal stories or research and share it with everyone on this site.  My ultimate goal is to create an interactive community of patients and their families, medical professionals, caregivers, nurses and home care aides, pharmacists, social workers – people who can share their stories with one another.  There can be anonymity – no one needs to disclose any personal information – just share your experiences, research and resources so that others can benefit from it.  The motto of this site is:  Sharing is Caring!  It’s a horrific time when a person and his or her loved ones finds out he or she has cancer.  No one need ever be alone.  Let’s help one another. Please go to the “Forum” on this site – share your advice and comments there.

I would like to thank all those who have supported me in my efforts and appreciate all the positive feedback.  Now you too can become proactive and take the next step and become a member of an interactive, sharing and caring community – known as the “Supportive Care Exchange.”  Not enough is done in this regard.  The focus on cancer is in prevention and a cure.  While this is important, the supportive care of cancer patient deserves greater attention; it is about helping patients deal with their symptoms, and try to improve their quality of life.  It shouldn’t have to be about suffering. Research has shown that palliative care is very important and should not be discounted at the early stage of diagnosis.  Many, including doctors, do not truly understand what it is all about and see it as “giving up” instead of being about supportive care. I hope to find more articles on “Palliative Care” and provide patients with resource information.  This is an area that needs more development and focus.

As more people begin to age their risk of getting cancer is much greater after the age of 65.   More and more articles are being written about how the costs of cancer care are very high and many are questioning the over treatment and over diagnosis of cancer.  I am including here very important articles reported in the New England Journal of Medicine (IOM-Institute of Medicine) and the Journal of American Medicine (JAMA) – about the “Crisis of Cancer Care” and how  the medical community needs to reevaluate and reexamine the current cancer treatments.  The articles provoke thoughts and bring up concerns over the quality of care that is provided to cancer patients: “Overdiagnosis and Overtreatment in Cancer:  An Opportunity for Improvement,”  ”Do Physicians Have an Obligation to Disclose the Uncertainty About Harms or Just the Harms?”  ”The Value of Sharing Treatment Decision Making With Patients Expecting Too Much,” “IOM Report:  Aging US Population, Rising Costs, and Complexity of Cases Add Up to Crisis in Cancer Care,” “It Is Possible Quality Measurement During Serious Illness,” “Women With Breast Cancer Who Opt for Contralateral Prophylactic Mastectomy May Overestimate Future Risk.”  These articles can be found in the “Relevant Articles” section of this website.

Please let me know what topics of research you are interested in.  I am doing my best to find the type of information I believe will help cancer patients and their families make informed decisions.  Keep supporting me!   Participate in the Forum!  Spread the word about the Supportive Care Exchange!

Thank you all,

Cheryl Silverman, Founder of Supportive Care Exchange

When someone you have known and loved all your life passes away, sometimes the loss and grief is so great that there is a tremendous feeling of emptiness.   Nothing can take away the pain of loss but we all find ways to cope and move on.  Read here how both Cheryl Silverman (the founder of this blog), and Sandra Mangarella (her sister) found a way to cope with the loss of their mom and dad (who passed away less than 2 years prior to their mom)……They believe they received a message from their parents?   Read the beginning of “The Egg Story:  A Story of Love and Hope”  here.  It continues in the Personal Stories (of Frieda Silverman) in this blog/website, Supportive Care Exchange.

“Was our mother giving us a message from beyond?”

The Egg Story

by Sandra Mangarella
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“My father passed away from prostate cancer in April 2010.  A few months later I met  with a psychic, Concetta Bertoldi, whose book , Do Dead People Watch You Shower,  had made a big impression on me.   I made an appointment two years in advance to meet with her, the timing of which was fortuitous  given that I had previously lost my dad.   I didn’t know what to do with a psychic, having never gone to one before.  She told me that I was an old soul and that my father commented (from beyond) that he could always talk to me about things that he couldn’t talk to anyone else about.  Those two things hit home right away. My father was my buddy.  He and I argued over politics and current events, so much so, that my mom used to yell at us to stop.  I had decided that after my visit, not only I would have an open mind about things, but I would also need something that would make me a true believer.”

Check out the rest of the story in the  “Personal Stories” section of Supportive Care Exchange.   Read about Frieda Silverman, as well as other cancer patients, their families, and so on.

Please be sure to share your story with us – on our blog.   There is comfort in sharing.  Sharing is caring!

This exciting news was reported in the New York Post published on March 27, 2013.

Researchers might have found the Holy Grail in the war against cancer, a miracle drug that has killed every kind of cancer tumor it has come in contact with, the New York Post reported.

The drug works by blocking a protein called CD47 that is essentially a “do not eat” signal to the body’s immune system, according to Science Magazine.

Survivor. When mice with human tumors received doses of anti-CD47, which sets the immune system against tumor cells, the cancers shrank and disappeared.
Credit: Fotosearch

This protein is produced in healthy blood cells, but researchers at Stanford University found that cancer cells produced an inordinate amount of the protein thus tricking the immune system into not destroying the harmful cells.

With this observation in mind, the researchers built an antibody that blocked cancer’s CD47 so that the body’s immune system attacked the dangerous cells.

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“We showed that even after the tumor has taken hold, the antibody can either cure the tumor or slow its growth and prevent metastasis,” said biologist Irving Weissman of the Stanford University School of Medicine in Palo Alto, California.

One side effect of the treatment was that healthy cells were subjected to short-term attacks by the mice’s immune system, but the effect was nothing in comparison to the damage done to the cancer cells.

Weissman’s group recently received a $20 million dollar grant to move their research from mouse to human safety testing.
Read more in Science Magazine

http://http://news.sciencemag.org/sciencenow/2012/03/one-drug-to-shrink-all-tumors.html?ref=hp

The National Cancer Institute, which is part of the National Institute of Health, is a great resource for information on the latest developments regarding cancer.   Check out the “Helpful Resources” section on this website/blog.

Listed below are some of the latest developments, as reported by NCI:

 NCI in the News

18 Million Cancer Survivors Expected by 2022                         
Time (subscription required)

(Posted: 03/28/2013) - An aging population coupled with improved treatment methods mean more people will survive cancer. But at what cost? The American Association for Cancer Research released its second Annual Report on Cancer Survivorship, which shows that the current 13.7 million cancer survivors in the U.S. will likely swell by 31% to 18 million by the year 2022… “How to ensure that these patients lead not only long lives, but healthy and productive lives, will be a vital challenge to all of us,” said Julia Rowland, the director of the Office of Cancer Survivorship at the National Cancer Institute in a statement.

• Women who ate more soy survive lung cancer better, study finds
  NBC News

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(Posted: 03/26/2013) - Soy foods, long shown to help lower the risk of cancer, may also help people survive at least some forms of cancer better. They found that Chinese women who ate the most soy were also less likely to die of lung cancer, the No. 1 cancer killer across the world. For the study, Gong Yang and colleagues at Vanderbilt University Medical Center, Shanghai Cancer Institute, and the National Cancer Institute looked at data from a large study of Chinese women called the Shanghai Women’s Health Study.

• Widespread Flaws Found in Ovarian Cancer Treatment
  New York Times (subscription required)

(Posted: 03/12/2013) - Most women with ovarian cancer receive inadequate care and miss out on treatments that could add a year or more to their lives, a new study has found…The National Cancer Institute took a rare step, one it reserves for major advances. It issued a “clinical announcement” to encourage doctors to use the IP treatment, and to urge patients to ask about it.

• Study Sees More Breast Cancer at Young Age
  New York Times (subscription required)

(Posted: 02/27/2013) - The incidence of advanced breast cancer among younger women, ages 25 to 39, may have increased slightly over the last three decades, according to a study released Tuesday. But more research is needed to verify the finding, which was based on an analysis of statistics, the study’s authors said. They do not know what may have caused the apparent increase… The researchers analyzed data from SEER, a program run by the National Cancer Institute to collect cancer statistics on 28 percent of the population of the United States.

Read more in the Relevant Articles section.

Check out the National Cancer Institute website:    http://www.cancer.gov/newscenter/nciinthenews?page=3&RecordsPerPage=10&Offset=20

Please join The Bonnie Addario Lung Cancer Foundation on Tuesday, March 19th, 5:30 pm (PST) live at their offices 1100 Industrial Rd. Suite 1, San Carlos CA or via our live stream! CLICK HERE! We are honored to introduce you to Geoffrey Oxnard, MD, who will be our guest speaker. Dr. Oxnard is a medical oncologist and researcher at Dana Farber Cancer Institute in Boston. He has devoted his career to caring for and treating lung cancer patients and researching and implementing better ways of understanding and treating the disease. Current research includes a study of familial lung cancer due to inherited EGFR mutations and a study of young adult lung cancer, both of which are collaborations with the Addario Lung Cancer Medical Institute. For Dr. Oxnard’s full bio, CLICK HERE.

The Bonnie Addario Lung Cancer Foundation sponsors a monthly live and online support group welcomes patients, survivors, families and friends. It is their HOPE  is that during your time together, we will share stories, talk through difficulties, give advice that only someone who really knows can give, raise awareness and offer support. 

Tune in every third Tuesday of each month and join the conversation. To view past recordings in the LUNG CANCER LIVING ROOM archives with important information that can make a difference in your journey: Click here

For more information, contact The Bonnie Addario Lung Cancer Foundation www.lungcancerfoundation.org

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IMPORTANT REMINDER: let us know about these video broadcasts and support groups that can help provide cancer patients with the information they need.  We encourage cancer organizations, support groups, cancer advocates to let us know about your work so we can help deliver the message to others.  We need to communicate supportive care services to cancer patients and their families.  Let us share our knowledge with one another!

We are the world, we are a community!

Today I had the privilege of being invited with a select group of people, to attend the filming of a very special episode of The Katie Couric Show which focused on the fight against cancer.  A common thread united us; each one had been affected by cancer, in one way or another, whether directly or indirectly.  Some are current cancer patients and some survivors.  Others were there to honor the memory of their loved ones. We were identified by our StandUp2 Cancer shirts and grouped by color. I was encouraged to see a good number of yellow shirts which represented the survivors. I was there to honor both my parents who passed away from cancer recently.

“Every minute another person dies from cancer,” Katie announced as we all stood in silence, holding up battery-operated candles of remembrance.  It felt very empowering to be there.  There was strength in the numbers.  We were all in together.  As Katie stated, it is through our tremendous support and unity to make an impact and ensure that the fight against cancer will go on.  Changes can be made for the better, and no one must lose sight.

Often I have wondered, “Am I next?” given the propensity toward cancer in my family history, but after being there I felt a glimmer of hope.

This was a well-produced, moving, engaging and enlightening show.  It covered a gamut of topics ranging from preventive care to the latest developments in cancer treatment. The show included prominent doctors and celebrities who have been very involved in this important cause – each was eloquent and inspiring. I encourage you all to watch it next week.

After the show when Katie Couric conducted a question and answer session with the audience.  I sat there listening to the stories, amazed by the various ways people  became involved as advocates—in sharing their own stories through blogs, developing artistic outlets for cancer patients for improving their well-being, and establishing special groups (e.g. Widows of Cancer Patients). Each has found his/her own way to fight cancer and cope.
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My own concern is to provide better supportive care services for patients and their families before, during and after treatment.  Not enough is being done.  Hence, this blog – so we can all share experiences and help one another.

The Katie Couric “Spotlight on Cancer Show:  Action & Awareness” will be rescheduled on Friday April 5th, at 3 PM on Channel 7, ABC – New York City (check your local listings).  It was pre-empted on March 13th due to the announcement of the new pope.

Living with cancer blog is an E-newsletter, supported by Chemotherapy.com.  Many of the articles are written by Mayo Clinic Nurse Educator, Sheryl M. Ness, R.N.   She provides helpful, concise and practical information to help those “Living with Cancer.”  Also, check out the Mayo Clinic.com’s website for invaluable resource information. Subscribe to their Living With Cancer e-newsletter to stay up to date on cancer topics.

Read the article, from Living with Cancer on “Watch and Wait Cancers – Monitoring Has Benefits.”
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