Reining in Renal Cancer
June 09, 2009 – Karen Patterson
Conquering Cancer & the Classroom
June 09, 2009 – Scott Williams
Targeted Therapy: Hope or Hype?
June 09, 2009 – Laura Beil
Message from the Editor
June 09, 2009 – Debu Tripathy, MD
Letters from Our Readers
June 09, 2009
All Is Not Lost
June 09, 2009 – Lacey Meyer
Medical Devices Face Stricter Regulations
June 09, 2009 – Jo Cavallo
Good Grilling
June 09, 2009 – Lena Huang
A Life Beyond Cancer
June 09, 2009 – Renée La Forest
Prostate, Brain & Kidney Cancers
June 09, 2009 – Elizabeth Whittington
Revisiting the Seasons of Survival
June 09, 2009 – Kenneth D. Miller, MD
Program Keeps Tabs on Childhood Cancer Survivors
June 09, 2009 – Lacey Meyer
With a Friend Like Will Ferrell...
June 09, 2009 – Lacey Meyer
www.armyofwomen.org
June 09, 2009 – Elizabeth Whittington
Q & A: Prostate Cancer Screening
June 09, 2009 – Len Lichtenfeld, MD
Ovarian Cancer Survivors Course
June 09, 2009
The Financial Advocate
June 09, 2009 – Kathy LaTour
Interventions Needed to Get Survivors Moving
June 09, 2009 – Lena Huang
ASCO Updates
June 09, 2009 – Staff Reports
No I.D.
June 09, 2009 – Katy Human
Disjointed Custody
June 09, 2009 – Charlotte Huff
Fighting Fatigue
June 09, 2009 – Lena Huang
Reconstruction Do-Overs
June 09, 2009 – Kathy LaTour
Hard Times
June 09, 2009 – Joanne Kenen
Currently Viewing
What About CUP Patients?
June 09, 2009 – Katy Human
Hair Loss Snapshot
June 09, 2009 – Lacey Meyer
Surgical Strategies
June 09, 2009 – Karen Patterson
Taking a Closer Look
June 09, 2009 – Karen Patterson
From Cancer Warrior to Basketball Player
June 09, 2009 – Deirdre Carey
Resources
June 09, 2009
Sticker Shock
June 09, 2009 – Laura Beil
Smarter Trials for Smarter Drugs
June 09, 2009 – Laura Beil
How to Find a Cancer Trainer
June 09, 2009 – Lena Huang
P.S. A Word About Implants & Some Unanswered Questions
June 09, 2009 – Kathy LaTour
Resources
June 09, 2009
Cancer Research Receives Infusion of Federal Funds
June 15, 2009 – Lacey Meyer
Improved Care Needed for Patients Receiving Heart-Toxic Drugs
June 15, 2009 – Melissa Weber
Chicken Soup for the Soul: The Cancer Book
June 15, 2009 – Kathy LaTour
Childhood Cancer Survivorship Programs
June 16, 2009
Web Exclusive: Clinical Trials for CUP
June 16, 2009
Web Exclusive: Solving a Medical Mystery
June 16, 2009 – Debu Tripathy, MD
Web Exclusive: An Infection Out of Nowhere
June 16, 2009
Excerpt: Stronger
June 17, 2009 – Natalie Flechsig
Web Exclusive: The Voice on the Other End of the Phone
June 18, 2009 – Dianne Ericson
Web Exclusive: A Peaceful Spirit
June 18, 2009 – Toby Bressler, RN, BSN, OCN
Web Exclusive: Fertility Guidelines Not Meeting Needs of Patients
June 22, 2009 – Elizabeth Whittington
Web Exclusive: When Survivors Should Exercise Caution
June 22, 2009 – Lena Huang
Web Exclusive: Searching for New Targets
June 23, 2009 – Elizabeth Whittington
Web Exclusive: Developing a Strategy
June 25, 2009 – Elizabeth Whittington
Web Exclusive: Helpful Advice
June 25, 2009 – Elizabeth Whittington
Web Exclusive: Types of Kidney Cancer
June 25, 2009 – The American Cancer Society
Web Exclusive: A Q&A with an Extraordinary Healer
June 30, 2009 – Kathy LaTour
Web Exclusive: Find a Clinical Trial That's Right for You
July 09, 2009
Web Exclusive: Find a Clinical Trial That's Right for You
July 09, 2009

What About CUP Patients?

Unknown primary cancers are not well-known or well understood, which can frustrate patients.

BY Katy Human
PUBLISHED June 09, 2009

Cancer of unknown primary isn’t exactly rare—an analysis of National Cancer Institute data shows that more than 30,000 new cases are diagnosed annually in the United States, about the same as for pancreatic cancer. But unknown primary cancers are neither well-known nor well understood, which can be frustrating for patients seeking information and support.

It can be disorienting to have cancer yet not belong to a group supported by an annual 5K or other fundraiser. “It’s just bizarre,” says Lori Young, 39, from New Market, Alabama, who was diagnosed two years ago with cancer of unknown primary (CUP). “You can’t just say, ‘Oh, it’s breast cancer, it’s colon cancer. You have to instead go through this whole process of explaining, ‘It’s in my liver, but it’s not liver cancer. They don’t know where it came from … .’ People just look at you like you’re making it up.”

Young, who is undergoing a second round of chemotherapy, couldn’t find an in-person support group focused on CUP. “Online turned out to be my best resource, finding other people on blogs and cancer sites,” she says. It can be a relief to talk with someone who “understands the language. It helps to not feel like you’re speaking a foreign language.”

Byron Holstine, Jr., 37, who lives in Thornton, Colorado, says he also turned to the Internet for information from the National Cancer Institute (www.cancer.gov), the American Cancer Society (www.cancer.org), and others such as Cancer.net. Support and information are also available through Jo’s Friends (www.cupfoundjo.org), a nonprofit started by a man in England who lost his wife to CUP.

Holstine was diagnosed with CUP in 2004, after four brain surgeries to remove what his doctors assumed was a benign pituitary tumor that kept growing back. Eventually, radiation knocked back the tumor in his brain, but now Holstine is fighting off unidentified metastases scattered around his chest wall. He’s been through bouts of radiation, chemotherapy, more surgeries—and a divorce in the middle. 

“For me, some friends have been my support group, and my parents, my mom especially,” Holstine says. For more support, he carefully follows news about promising cancer treatments. “I know there are some phenomenal things coming to a head now in terms of treatment. You focus on that, and you focus on saying, ‘This is not a death sentence.’ ”

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