Author Archive for: ‘The Bili Project Foundation’

Today is the Day!

TODAY IS THE DAY! World Cholangiocarcinoma Day is an international effort to raise much-needed awareness of cholangiocarcinoma, a devastating cancer that occurs in the bile ducts in or outside the liver. This poorly understood and under researched disease is increasing in incidence globally – we believe collaboration is the way forward! Let’s make a difference and SPREAD AWARENESS about this little known cancer. #WorldCCADay

A Bile Duct Cancer Story of Hope: Michael Lax

Michael Lax tells his bile duct cancer story of hope. In May 2014, Michael was diagnosed with Cholangiocarcinoma. After undergoing surgery, in January 2015, Michael was declared cancer free.

World Cholangiocarinoma Day 2016

WorldCCADayWorld Cholangiocarcinoma Day is an international effort to raise much-needed awareness of cholangiocarcinoma, a devastating cancer that occurs in the bile ducts in or outside the liver. This poorly understood and under researched disease is increasing in incidence globally – we believe collaboration is the way forward.

The Bili Project Foundation is proud to be a partner in first ever World Cholangiocarinoma Day in an effort to raise awareness of this silent killer.

WANT TO GET INVOLVED?

Share the global awareness message on social media, and with friends and family.

We need your help to raise much needed awareness of cholangiocarcinoma. Become part of the collective voice of those advocating for patients with this devastating cancer. Join with us in telling the world that cholangiocarcinoma is a cancer that can’t be ignored.

KEY POINTS

  • Many don’t know what cholangiocarcinoma is, and that lack of awarenesss is a major problem.
  • Most with cholangiocarcinoma are diagnosed too late for potentially curative surgery – ways to
    earlier diagnosis are desperately needed.
  • We need to stand together and tell the world that cholangiocarcinoma is a cancer that can’t be ignored.
  • We need to talk about cholangiocarcinoma.
  • Find out more about cholangiocarcinoma on the pages CCA: The facts and CCA: The statistics
    and on the websites of the World Cholangiocarcinoma Day partners listed on the Home page.
Visit wwww.worldcholangiocarcinomaday.org for more information.

*All information courtesy of WorldCholangiocarinomaDay.org

A Look at Hepatobiliary Cancer

Gloryanne Bryant, RHIA, CDIP, CCS, CDIP
AHIMA Approved ICD-10-CM/PCS Trainer

Hepatobiliary cancer is a challenge in medicine because it is very hard to detect and is the leading cause of biliary tract obstruction, after gallstones.  These cancers are notoriously difficult to diagnose, molecularly and genetically highly heterogeneous, and refractory to standard therapies. Hepatobiliary cancers are the 7th leading care of cancer death in the United States and the 3rd leading cause of cancer deaths worldwide.  Hepatobiliary cancers are on the rise in the U.S. with increasing numbers of cases projected.

Risk Factors: Some of the known risk factors for Hepatobiliary cancer are as follows:

  • Long-term infection with hepatitis B or hepatitis C
  • Heavy alcohol use
  • Obesity
  • Type 2 diabetes
  • Inherited metabolic disease
  • Exposure to toxins such as arsenic, aflatoxins, vinyl chloride, and thorium dioxide
  • Anabolic steroids

Signs/Symptoms: The warning signs and symptoms which sometimes resemble other medical conditions or problems occur with Hepatobiliary cancers. Signs and symptoms include:

  • Jaundice
  • Abdominal pain
  • Poor appetite
  • Weight Loss
  • Itching
  • Pale stools
  • Dark Urine
  • Fever

Diagnosing: Diagnostic tools for Hepatobiliary cancers may include:

Endoscopic retrograde cholangiopancreatography — ERCP is a procedure used to create images of the digestive tract. During an ERCP procedure, doctors insert a thin, lighted tube into the mouth and down through the stomach to produce an image of the surrounding organs and glands.

Magnetic resonance cholangiopancreatography — MRCP is similar to an MRI, except that it uses specialized software to target the pancreas and bile ducts and create detailed images.

X-ray, CT, MR and PET scans are often needed to show the location and extent of the cancer.

Also used are blood samples for tumor makers including alpha-fetoprotein (AFP) cancer antigen 19-9 (CA 19-9) and cancinoembryonic antigen (CEA) may be tested to guide the diagnostic evaluation.

To confirm a diagnosis, doctors will need to remove a small piece of tissue from a tumor for testing. Often, a biopsy sample can be collected during an ERCP procedure, if one is performed.

Treatment:  Depending on the location of the tumor, where the cancer originated, the stage of the cancer, and the overall health of the patient, several techniques may be used, either independently or together, to attempt to slow tumor growth or relieve pain. The following are options that may be considered:

  • Brachytherapy
  • Radiotherapy
  • Chemotherapy
  • Liver transplantation

External beam radiation therapy is also a treatment option that involves a series of daily outpatient treatments to accurately deliver radiation to the area at risk.

Surgery may be necessary to remove the cancerous tissue as well as any nearby non-cancerous tissue. Surgery may also be used to relieve any blockage of the bile duct or to relieve symptoms.

Stent placement is another treatment choice that will help drain bile that builds up on the area. The stent also helps to bypass the blockage that causes symptoms such as pain or yellowing of the eyes and skin. A stent may be placed temporality until surgery can be performed to remove any cancerous tumor(s) or a permanent stent may be placed.

For coding professionals understanding disease processes and having knowledge of clinical indicators is a foundational competency for accurate clinical coding. Learning and enhancing our knowledge and skills are basic to quality clinical data that can help with research, reimbursement and population health.

References and for more information: http://www.thebillproject.org; http://www.treatcancer.com/hepatobiliary-cancers/http://www.ucsfhealth.org/newsletters/inside_surgery/summer_2012/new_hepatobiliary_service/index.html

Sue Acquisto at the Ruesch Symposium

The Bili Project Foundation’s very own Sue Acquisto will be speaking at the Ruesch Patient Symposium at Georgetown University this coming December 2015. The Ruesch Symposium is a 3 day event happening annually. Click HERE to view the full schedule of events. Patients are encouraged to attend.

Sue Acquisto will be speaking during the Disease Specific Breakout Sessions on Liver and Biliary Cancers on December 5th from 10:30AM-11:30AM. She will also be on a panel discussing Measuring Value and Outcomes on December 5th from 12:30 PM-2:00 PM.

The Ruesch Center for the Cure of Gastrointestinal Cancers Mission: Combining expertise in molecular medicine, translational research, and a patient-centered philosophy, the Ruesch Center will realize the dream of individualized curative therapies through research, care, and advocacy.

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4th Annual Vince Acquisto Memorial Golf Tournament

More than 85 golfers tee’d it up at the 4th Annual Vince Acquisto Memorial Golf Tournament on Monday, October 12, 2015, at Blackhawk Country Club. The winning foursome in the scramble format, with a best ball score of 56, were Susan Acquisto, Dr. Bob Kerlan, Ed Moses and Joy Stephenson-Laws.

After the round of golf, more than 110 dinner guests enjoyed a cocktail hour featuring a silent auction featuring golf memorabilia and wine. The foundation raised a total of $14,643.00 which will go towards continued efforts in finding a cure for hepatobiliary cancers.

If you would like to download any of the photos below, click on the photo and it will redirect you to that photo on Flickr or CLICK HERE to go directly to the album. 

Check out  photos from the tournament in the album below.

2015 4th Annual Vine Acquisto Memorial Golf Tournament

Our Patient Count is Growing!

Currently, as of September 11, 2015, there are 211 patients with banked samples in the UCSF Hepatobiliary Tissue Tumor Bank. As mentioned before, the Foundation believes that the ongoing maintenance of such a bank, specifically for Hepatobiliary tumors, will significantly enhance the ability to accurately diagnose and treat patients with these deadly diseases.

The graph below summarizes the patient enrollment data for the Hepatobiliary Tissue Bank. The graph begins from the HBTB activation month and year (August 2012) and charts through September 2015. When the HBTB was activated it started out with 25 cases that were migrated from a pre-existing collection – a clinical trial that began years before the tissue bank opened. The UCSF Medical team definitely has made significant strides in obtaining samples to continue research efforts in finding early detection methods and treatments towards a cure for hepatobiliary cancers.

HBTB Patient Enrollment 9.11.15

 

The collaboration map below shows the institutions across the nation who are working and collaborating together on several projects involving hepatobiliary cancers. The newest collaborator to join in as an HBTB Specimen/Data Collaborator site is Ohio State University. The various projects include genome wide association studies and retrospective studies wherein UCSF accesses the repository of specimens and data in the bank. This sharing of data and specimens allows UCSF, a regional cancer center along with these highly respected cancer hospitals and institutions to work together to advance hepatobiliary cancer research.collaboration map KK_September2015

189 Patients and Counting

Currently, as of July 2015, there are just over 189 patients with banked samples in the UCSF Hepatobiliary Tissue Tumor Bank. The Foundation believes that the ongoing maintenance of such a bank, specifically for Hepatobiliary tumors, will significantly enhance the ability to accurately diagnose and treat patients with these deadly diseases.

The graph below summarizes the patient enrollment data for the Hepatobiliary Tissue Bank. The graph begins from the HBTB activation month and year (August 2012) and charts through June 2015. When the HBTB was activated it started out with 25 cases that were migrated from a pre-existing collection – a clinical trial that began years before the tissue bank opened. The UCSF Medical team definitely has made significant strides in obtaining samples to continue research efforts in finding early detection methods and treatments towards a cure for hepatobiliary cancers.

HBTB Cases 2012-2015

The collaboration map below shows the institutions across the nation who are working and collaborating together on several projects involving hepatobiliary cancers. The various projects include genome wide association studies and retrospective studies wherein UCSF accesses the repository of specimens and data in the bank. This sharing of data and specimens allows UCSF, a regional cancer center along with these highly respected cancer hospitals and institutions to work together to advance hepatobiliary cancer research.

collaboration map KK

One Step Closer – Showered with Love in Illinois

Early this year we told you about Lisa Simpson who lost her brother Nicky John to bile duct cancer 21 short days after diagnosis in April of 2014 and how she wanted to do something in his honor to raise awareness. Co-Founder Sue Acquisto of The Bili Project Foundation traveled to Illinois to meet Lisa, Ruth Kramp and their team of BILIever volunteers in person to thank them for the tremendous work they did in bringing awareness to Bile Duct Cancer. Sue received such a warm welcome upon arrival and was presented with a check in the amount of $15,375.59 which they raised from the two fundraisers organized earlier this year. Sue commented, “This group of volunteers who have had personal losses and challenges in their life are an inspiration, they worked together tirelessly with the support of their community businesses to raise this money in support of The Bili Project Foundation.” She expressed to this group of BILIevers, how grateful the foundation is and that every dollar they raised will go towards our continued efforts in raising awareness and finding a cure for this disease.

To see photos from the two fundraisers Lisa planned and organized click here.

Bili Check IMG 54Bili check with group IMG 61Cutting Bili Cake IMG 68group pic of participants

Save the Date: 4th Vincent Acquisto Memorial Golf Tournament

It’s that time of year again. Make sure you save the date to attend this years tournament in Danville, CA.

Click here for additional tournament details and download the registration form here.

VAMGT-Save-the-Date_2015

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