Diagnosed with pancreatic neuroendocrine tumors (pNET) in 2013 and in first remission since 2019, I have become a public advocate and virtual coach. I reside in the USA. I was born in Ghana, West Africa and has also resided and worked in Zimbabwe, Botswana and the United Kingdom.
After a career in management consulting at Deloitte, I worked in multiple administrative roles at the University of Chicago and the University of Wisconsin-Madison. In addition, I previously served as the vice-president of the African Association of Madison, a non-profit organization that fosters advancement of people of African descent. I have also served as a public safety review advocate in the office of the Mayor, Madison, Wisconsin.
Currently, I devote my energies to a variety of civic projects including but not limited to virtual coaching, supporting the African Diaspora, and serving as a public advocate with multiple health focused organizations (Group Health Cooperative of South Central Wisconsin Advisory Council and the UW Health University Hospital and clinics).
MY JOURNEY SO FAR.
On February 24, 2013, during a visit to the UW Health Emergency Room with symptoms typical of pneumonia (cough with phlegm, fever, chills, and difficulty breathing I was diagnosed with community acquired pneumonia and an abdominal mass.
The abdominal mass was suspected to be cancerous, so I was referred to an oncologist at UW Carbone Cancer Center. My oncologist ordered a biopsy which came back presenting a neuroendocrine tumor (NET).
NET cells are spread throughout the human body, but are mainly found in the small intestine, pancreas, and lung bronchioles, and are often low grade and slow growing.
I had a distal pancreatectomy in 2013 and a tumor the size of a golf ball along with my spleen, gallbladder, bile duct were removed. It is estimated that the tumor had been growing in my pancreas for over a decade.
pNET has no cure, the average time of progression for recurrence in my case is a 50% chance in 5 years.
To cope with the psychological stress of pNET, activities of daily living must be deliberately stress free. I manage stress by walking and weightlifting workouts at my local YMCA. When not in treatment, my day is filled with the activities mentioned earlier. However, I am most proud of the time I get to spend with my loving and dedicated spouse, KL and our teenage daughter and my extended family, who continue to make themselves support me through this journey.
FIRST RECURRENCE.
During a routine surveillance imaging in June 2017 a recurrence of the pNET was discovered. After consultation with my oncologist and my surgeon at Froedtert & the Medical College of Wisconsin, a total pancreatectomy was scheduled. Total pancreatectomy meant removal of entire pancreas, portions of my small intestine and stomach. After many sleepless nights and consultation with family, friends, and my medical team, I engaged in the pre-op process.
Always fighting alongside, me, is KL, my spouse of over 20 years. KL is an excellent researcher and has read extensively about NETs. She read about the Holden Comprehensive Cancer Center at University of Iowa (UI), established in 1999 and a center of excellence for studying and treating NETs. UI is a leading center for Peptide Receptor Radionuclide Therapy (PRRT). With that insight, KL suggested a visit to UI for a second opinion before taking on the total pancreatectomy!
UI was an “out of network” institution and the insurance company declined to authorize the visit. With KL’s initiative, persistence and knowledge, an appeal was made, and the visit was approved. In fact, we literally received the approval by email as we drove west on US-151 heading to Iowa for the appointment!
During the consultation, the team of neuroendocrine specialists used a flowchart showing management and treatment options of care. What really brightened me up was the lock analogy.
The "lock" is a type of receptor on neuroendocrine tumors. The locks have keys, or hormones, that can bind to the receptors and slow the growth of the tumors. The oncologists explained "I only need 10 percent of these tumor cells with receptors to have an effect from the hormone and slow down the tumor growing", I had more than required tumor count of 10% and easily met the threshold for PRRT.
MIRACLE WITHIN GRASP.
On January 26, 2018, the U.S. Food and Drug Administration approved, Lutetium 177 DOTA-TATE (Lu-177) to treat somatostatin-receptor-positive gastroenteropancreatic neuroendocrine tumors including foregut, midgut and hindgut tumors in adults. Lu-177 is used for PRRT and in April 2018, the UW Health begun using PRRT to manage and treat NET cancers
PRRT is not a cure for NET. The aim of this therapy is to slow or stop progression of NET growth and decrease symptoms associated with the hormones released by the NET. At the time of my treatment, studies found that patients treated with PRRT had a mean progression free survival of 44 months.
IN SHORT, PRRT BUYS TIME. At least for me and my family PRRT delivered on its promise to “buy time”.
SECOND RECCURENCE.
In December 2022, during a routine surveillance, disease progression was detected. The NET had started to grow-second recurrence.
After consultation with my team, I returned to Froedtert & the Medical College of Wisconsin, for a total pancreatectomy.
Without a pancreas, I am a type 1 diabetic. I struggle with glucose management but thanks to a continuous glucose monitor (CGM) my blood sugar is in range 62% of the time.
THE GOAL IN SHARING MY STORY… I WANT YOU TO KNOW HOW YOU CAN HELP.
It is amazing how fast research is producing drugs/treatments to slow the growth of cancer cells and in some cases CURE.
“F U N D research 4 the patient of T O M O R R O W” is my appeal to you.
At the beginning of this journey, in 2013, Lu-177 was not available in the US as an approved treatment for NET cancers. The gold standard in the US was to surgically remove the tumor and have the patient live life with outcomes that negatively impacted normal activities of daily living.
HOW YOU CAN HELP.
Please click on WAYS TO HELP on the menu bar. You would find links to organizations that provide care for cancer patients and/or are working hard researching cures for this chronic disease. During this stressful journey, KL has had to make dozens of emotional and time-consuming phone calls, text, and emails to let family and friends know of my journey.
This exhausting experience led to finding CaringBridge, a powerful connection platform that continues to facilitate family support and encouragement, during this journey with cancer.
CaringBridge is a 501(c)(3) nonprofit organization, founded in 2002 to provide support when it’s needed most.
In times of need, the greatest source of strength, comfort and courage is the love of family and friends. Please donate to CaringBridge.
THANK YOU FOR READING THIS FAR. ---
THE LONG GAME
- February 2013 - ER visit with symptoms of pneumonia
- February 2013 - Diagnosed Neuroendocrine Tumor with a primary in the pancreas (PNET)
- July 2013 - Distal Pancreatectomy
- March 2014 - Diagnosed Hurthle Cell Carcinoma
- April 2014 - Thyroidectomy
- July 2014 - PET/CT Scan
- October 2014 - PET/CT Scan
- October 2014 - Thyroidectomy
- January 2015 - PET/CT Scan
- April 2015 - PET/CT Scan
- July 2015 - PET/CT Scan
- October 2015 - PET/CT Scan
- February 2016 - PET/CT Scan
- May 2016 - PET/CT Scan
- December 2016 - PET/CT Scan
- June 2017 - PET/CT Scan
- June 2017 - PNET Recurrence
- December 2017 - PET/CT Scan
- February 2018 - PET/CT Scan
- May 2018 - 1st Peptide Receptor Radionuclide Therapy (PRRT)
- July 2018 - 2nd Peptide Receptor Radionuclide Therapy (PRRT)
- August 2018 - Gallium-68 (Ga-68) PET/CT Scan
- September 2018 - 3rd Peptide Receptor Radionuclide Therapy (PRRT)
CaringBridge is a nonprofit social network dedicated to helping family and friends communicate with and support loved ones during a health journey. Learn more about CaringBridge.
