Proposed Federal Gov’t Rule Adds Ovarian Cancer to 9/11 World Trade Center Health Program List of Covered Conditions

On June 13, 2012, the federal government will publish a proposed rule that will add ovarian cancer to the list of conditions covered by the World Trade Center Health Program. It is anticipated that the proposed rule will take several months to finalize prior to becoming effective. The WTC Health Program was established by the James Zadroga 9/11 Health and Compensation Act of 2010, which provides health benefits and financial compensation to those harmed by the attacks of September 11th and its aftermath.

The World Trade Center Health Program (WTC Health Program) was established by the James Zadroga 9/11 Health and Compensation Act of 2010, which provides health benefits and financial compensation to those harmed by the attacks of September 11th and its aftermath.

The WTC Health Program provides services to responders, workers, and volunteers who helped with rescue, recovery, and cleanup at the World Trade Center and related sites located within the defined “New York City disaster area.” It also provides services for survivors who lived, worked, or were attending school in the area. The WTC Health Program will also be serving responders to the 9/11 attacks at the Pentagon in Arlington, Virginia, and the Flight 93 crash site in Shanksville, Pennsylvania

The WTC Health Program is administered by the National Institute for Occupational Safety and Health (NIOSH). After conducting a long-term study, NIOSH stated in a recent administrative filing that it favored a major expansion of the existing $4.3 billion WTC Health Program to include eligible individuals with 50 types of cancer, covering 14 broad categories of the disease. The specifics underlying NIOSH’s administrative decision will be published on June 13, 2012 in the Federal Register as a Notice of Proposed Rulemaking, entitled World Trade Center Health Program; Addition of Certain Types of Cancer to List of WTC-Related Health Conditions. Within the proposed rule, ovarian cancer (i.e., “malignant neoplasms of the ovary”) is listed as one of the enumerated cancer types.

Pursuant to NIOSH’s proposed rule, the WTC Health Program will provide medical testing and care for specific symptoms and illnesses related to being exposed to the disaster sites. The services will be provided by clinics and hospitals that have expertise in the diagnosis and treatment of 9/11-related health conditions.

It is important to note that NIOSH’s proposed rule does not represent a final administrative determination. The Notice of Proposed Rulemaking is subject to public review and a 30-day comment period. Once public comment is received, NIOSH will consider and address those comments as appropriate before issuing a final ruling. The proposed rule may change prior to finalization, or it may not be finalized at all.

If NIOSH determines that it is appropriate to issue a final rule to cover select cancer types, and a final rule is published, additional steps would be necessary before an eligible responder or survivor could receive care and treatment under the WTC Health Program. The physician diagnosing the cancer would be responsible for reviewing the individual’s exposure history to determine whether her cancer could be related to a 9/11 exposure; the individual’s diagnosis must then be certified by NIOSH before care and treatment can begin.

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U.K. NICE Issues New Clinical Guidelines Re Recognition & Initial Management of Ovarian Cancer

On April 27, 2011, the U.K. National Institute For Health and Clinical Excellence issued new clinical guidelines regarding the recognition and initial management of ovarian cancer.

On April 27, 2011, the U.K. National Institute For Health and Clinical Excellence (NICE) issued new clinical guidelines regarding the recognition and initial management of ovarian cancer.

In the first ever clinical guideline for ovarian cancer, NICE is calling for more initial investigations to take place in primary care settings, such as general practice (GP) surgeries, so that women can be referred to hospital specialists sooner and begin treatment. This guidance updates and replaces recommendation 1.7.4 in Referral guidelines for suspected cancer (NICE clinical guideline 27; published 2005).

NICE also produced a series of tools to help U.K. healthcare professionals put this new guidance into practice, including guidance documents for doctors and patients, podcasts, clinical case scenarios and a slide set. To view a complete list of all NICE-produced guidance materials available to doctors and patients, visit http://guidance.nice.org.uk/CG122.

The full text NICE ovarian cancer clinical guidelines are classified under the following six chapter headings:

  • Epidemiology
  • Detection in Primary Care
  • Establishing the Diagnosis in Primary Care
  • Management of Suspected Early (stage I) Ovarian Cancer
  • Management of Advanced (stage II-IV) Ovarian Cancer
  • Support Needs of Women With Newly Diagnosed Ovarian Cancer

The key priorities identified by NICE for successful implementation of the new ovarian cancer clinical guidelines by primary and secondary healthcare professionals include the topics addressed below.

Awareness of Symptoms & Signs

— Carry out tests in primary care if a woman (especially if 50 or over) reports having any of the following symptoms on a persistent or frequent basis – particularly more than 12 times per month:

  • persistent abdominal distension (women often refer to this as “bloating”);
  • feeling full (early satiety) and/or loss of appetite;
  • pelvic or abdominal pain; and/or
  • increased urinary urgency and/or frequency.

— Carry out appropriate tests for ovarian cancer in any woman of 50 or over who has experienced symptoms within the last 12 months that suggest irritable bowel syndrome (IBS), because IBS rarely presents for the first time in women of this age.

Asking the Right Question – First Tests

— Measure serum CA125 in primary care in women with symptoms that suggest ovarian cancer.

— If serum CA125 is 35 IU/ml or greater, arrange an ultrasound scan of the abdomen and pelvis.

— For any woman who has normal serum CA125 (less than 35 IU/ml), or CA125 of 35 IU/ml or greater but a normal ultrasound:

  • assess her carefully for other clinical causes of her symptoms and investigate if appropriate; and
  • if no other clinical cause is apparent, advise her to return to her general practitioner (GP) if her symptoms become more frequent and/or persistent.

Malignancy Indices

— Calculate a risk of malignancy index I (RMI I) score (after performing an ultrasound) and refer all women with an RMI I score of 250 or greater to a specialist multidisciplinary team.

— Risk of malignancy index I (RMI I): RMI I is a product of the ultrasound scan score (U), menopausal status (M) and serum CA125 level.

— RMI I = U x M x  CA125

  • The ultrasound result is scored 1 point for each of the following characteristics: multilocular cysts, solid areas, metastases, ascites, and bilateral lesions. U = 0 for an ultrasound score of 0 points, U = 1 for an ultrasound score of 1 point, U = 3 for an ultrasound score of 2–5 points.
  • Menopausal status is scored as 1 = pre-menopausal and 3 = post-menopausal. The classification of “post-menopausal” is a woman who has had no period for more than 1 year or a woman over 50 who has had a hysterectomy.
  • Serum CA125 is measured in IU/ml.

Tissue Diagnosis

— If offering cytotoxic chemotherapy to women with suspected advanced ovarian cancer, first obtain a confirmed tissue diagnosis by histology (or by cytology if histology is not appropriate) in all but exceptional cases.

The Role of Systematic Retroperitoneal Lymphadenectomy

— Do not include systematic retroperitoneal lymphadenectomy (block dissection of lymph nodes from the pelvic side walls to the level of the renal veins) as part of standard surgical treatment in women with suspected ovarian cancer whose disease appears to be confined to the ovaries (that is, who appear to have stage I disease).

Adjuvant Systemic Chemotherapy For Stage I Disease

— Do not offer adjuvant chemotherapy to women who have had optimal surgical staging and have low-risk stage I disease ([tumor] grade 1 or 2, stage Ia or Ib).

Support Needs of Women with Newly Diagnosed Ovarian Cancer

— Offer all women with newly diagnosed ovarian cancer information about their disease, including psychosocial and psychosexual issues, that:

  • is available at the time they want it;
  • includes the amount of detail that they want and are able to deal with; and
  • is in a suitable format, including written information.

Source:  Ovarian cancer: the recognition and initial management of ovarian cancer (CG122), Full Guideline, National Institute For Health & Clinical Excellence (NICE), U.K. National Health Service (NHS), April 2011.

Additional Information:

“Too Often We Underestimate The Power Of A Touch”*

One of the most comforting forms of support you can give a person with cancer is the use of touch. Family caregivers can significantly reduce symptoms in cancer patients at home through use of simple touch and massage techniques. These findings were recently reported at the 6th International Conference of the Society for Integrative Oncology.

Study Shows Family Caregivers’ Simple Touch Techniques Reduce Symptoms in Cancer Patients

One of the most comforting forms of support you can give a person with cancer is the use of touch.  Family caregivers can significantly reduce symptoms in cancer patients at home through use of simple touch and massage techniques. These findings were recently reported at the 6th International Conference of the Society for Integrative Oncology.

The study, sponsored by the National Cancer Institute, evaluated outcomes of a 78 minute DVD instructional program and illustrated manual in a sample of 97 patients and their caregivers. The multi-ethnic sample represented 21 types of cancer (nearly half with breast cancer) and all stages of disease. Caregivers included spouses, adult children, parents, siblings and friends. The project was conducted in Boston, Massachusetts, Portland, Maine, and Portland, Oregon using English, Spanish and Chinese languages.

“Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.”  — Leo F. Buscaglia, from his book entitled, Living, Loving & Learning.

William Collinge, Ph.D., MPH, President, Collinge and Associates. Dr. Collinge is a consultant, author, speaker and researcher in the field of integrative health care. He has served as a scientific review panelist for the National Institutes of Health in mind/body medicine, complementary therapies & health care services

According to the principal investigator, William Collinge, PhD, MPH, president of Collinge and Associates states, “Touch and massage are among the most effective forms of supportive care in cancer, but most patients cannot access professional practitioners of these methods on a regular basis. This study sought to determine whether family caregivers receiving brief home-based instruction could deliver some of the same benefits as professionals. It appears they can.”

In the study, couples were randomized to either an experimental group using the program, or an attention control group. Caregivers in the experimental group were asked to apply the instruction for at least 20 minutes, three or more times per week for a month. Those in the control group were assigned to read to the patient for the same amounts of time. Patients completed report cards before and after sessions rating their levels of pain, fatigue, stress/anxiety, nausea, depression, and other symptoms.

Results indicated significant reductions for all symptoms after both activities, indicating that companionship alone has a positive effect. However, while symptoms were reduced from 12-28% after reading, massage from the caregiver led to reductions of 29-44%. The greatest impact was on stress/anxiety (44% reduction), followed by pain (34%), fatigue (32%), depression (31%), and nausea (29%). Patients reporting an optional “other” symptom (e.g., headaches) saw reductions of 42% with massage. Caregivers in the massage group also showed gains in confidence and comfort with using touch and massage as forms of caregiving.

According to Collinge, “It appears that family members who receive simple instruction in safety and techniques can achieve some of the same results as professional practitioners. This has important implications not just for patient well-being, but for caregivers as well. Caregivers are at risk of distress themselves – they can feel helpless and frustrated when seeing a loved one suffer. This gives a way to make a difference for the patient, and at the same time increase their own satisfaction and effectiveness as a caregiver. It also appears to strengthen the relationship bond, which is important to both.”

The DVD program, titled Touch, Caring and Cancer: Simple Instruction for Family and Friends,  is expected to be released to the public during the week of November 22, 2009. The DVD program will be available in English, Spanish and Chinese. More information and video trailers are available at www.partnersinhealing.net.

Vodpod videos no longer available.

About Collinge and Associates

Collinge and Associates is an independent research and consulting organization based in Kittery, Maine. The group conducts research in complementary therapies for the National Institutes of Health, and does scientific review consulting for NIH and other organizations. Website: www.collinge.org.

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*Title Source:

The title was excerpted from the words of Leo F. Buscaglia that appear in his book Living, Loving & Learning. Buscaglia was a teacher in the Department of Special Education at the University of Southern California (USC) in the late 1960’s. During his tenure at USC, one of Buscaglia’s students committed suicide.  The incident had a great impact on Buscaglia and led him to establish a non-credit class titled, Love 1A. The class led to lectures and a manuscript loosely based on what was shared in those weekly classes. The manuscript led to the publication of a book entitled, LOVE:  What life is all about.  Shortly thereafter, Leo Buscaglia’s presentations were taped by the Public Broadcasting System (PBS) and shown on television.  The PBS television presentations touched the hearts of many television viewers.  Buscaglia is often referred to as the granddaddy of motivational speakers. During his lifetime, Buscaglia was a popular speaker on television talk shows and the lecture circuit.  There was one point in time when five of his books appeared simultaneously on The New York Times Best Sellers List.

Libby’s H*O*P*E*(tm) Adds New Cancer Video Archive Courtesy of Vodpod.com

Yesterday, Libby’s H*O*P*E* added a new cancer video archive to the weblog courtesy of Vodpod.com.  Currently, the archive contains approximately 90 videos that address many general cancer and ovarian cancer issues, as well as the personal voices of those affected by cancer. The new video archive is located on the homepage right sidebar.  All you have to do is “click and play.”

vodpod-logoYesterday, Libby’s H*O*P*E* added a new cancer video archive to the weblog courtesy of Vodpod.com.  Currently, the archive contains approximately 90 videos that address many general cancer and ovarian cancer issues, as well as the personal voices of those affected by cancer. The new video archive is located on the homepage right sidebar.  All you have to do is “click and play.”  The video arrangement is set to “random order” so that new videos appear on the homepage sidebar each time you visit Libby’s H*O*P*E*.

If you are aware of a general cancer/ovarian cancer video that is educational, heartfelt, inspirational, humorous, poignant, or is simply dedicated to the one you love, please provide us with the URL address of the video.  The URL video address can be sent to us by email (click on the “contact” button located at the top of the homepage), or by comment (post a comment under this post).  Upon receipt of the video URL address, we will add the referenced video to the new archive.  We appreciate your participation in adding to our video archive and hope you find the archive helpful.

Understanding Cancer: A TV News Magazine

Yesterday, we came across an informative online cancer TV news magazine entitled “Understanding Cancer.” Based upon its mission statement, the Understanding Cancer website provides:

  • Empowerment through reliable, understandable information about cancer and its treatment;
  • Inspiration through the stories of cancer survivors and their cancer journeys;
  • Information about community oncology practitioners who are dedicated to outstanding patient care;
  • Stress relief through a “Meditation Room;”
  • Tips for managing symptoms;
  • Tools for living life to its fullest;
  • Compassion and understanding;
  • Relaxation through its “Mindless Distractions” which include online games, and crafts;
  • And most of all…Hope!

If you would like to learn more about Understanding Cancer TV, click here to watch the Understanding Cancer Welcome video located under the H*O*P*E*™ Ovarian Cancer Video Archive posting dated July 10, 2008, or visit the Understanding Cancer website by clicking on the banner below.


www.UnderstandingCancer.tv