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November 10 is World NET Cancer Day

Disclaimer:  This is not my typical blog but would like to bring some awareness to neuroendocrine cancer and I have copy/pasted many facts from  https://www.facebook.com/netcancerday/

5-7 out of every 100,000 are diagnosed with #netcancer each year- Ashley Baker Taube was first diagnosed in 2012.

50% of #netcancer patients have secondary growths at diagnosis- Initially, Ashley was told she had 1 tumor and that it could be removed completely by having a procedure called the Whipple surgery.  After surgery it was found that Ashley had clean margins, scans were clear and that she was “cured.”

60-80% of patients are diagnosed with #netcancer at advanced stage showing the need for symptom awareness. At diagnosisAshley was stage 2B, not an advanced stage but it had spread to her lymphnodes.

Misdiagnosing is common. On average #netcancer patients see 6 healthcare professionals over 12 visits before a correct diagnosis –Ashley saw 4 healthcare professionals and had 7 visits before a diagnosis. Through the course of her treatment Ashley averaged a visit every three weeks and saw over 40 different healthcare professionals.

Symptoms of #netcancer are often similar to more common conditions: IBS, asthma, diabetes. Ashley’s only symptom was itching for a month due to bile backing up in her system. Later she would develop diarrhea, fatigue, and jaundice.

#netcancer can arise throughout the body in organs that contain #neuroendocrine cells such as the stomach, bowel, lungs, and pancreas. Ashley’s primary neuroendocrine tumor was in the head of her pancreas. Not to be confused with pancreatic cancer or adenocarcinoma.

Nearly all #netcancer are considered to be malignant as they grow uncontrollably and spread. – Ashley’s cancer was malignant and spread with her reoccurrence being diagnosed early December 2015. In March 2016 she was told that the cancer had grown and that there was spots detected in her “tumor bed” (original location) and near her aorta, with questionable spots on her liver.

More than 80% of #netcancer patients stopped working as a result of their cancer. Ashley quit working as a teacher but continued to be a full-time mom, wife, friend, mentor and competition cheer coach.

Patients treated in a #netcancer specialist center feel more empowered and knowledgeable about their treatment and care – Ashley was grateful for the doctors and specialists that took care of her and showed her compassion throughout her treatment at Emory and Moffitt Cancer Center .

The incidence of #NETs is low, but #netcancer patients are everywhere. Thankfully, many live long & happy lives #netcancerday. Ashley Baker Taube lived more in her 6 years since initial diagnosis than most people live in a lifetime. I miss her everyday but I continue to be grateful for the time I did get with her, the care she received, and the miracle that is our son Baker who was born 2 years after Ashley’s initial fight with this horrible disease.

#netcancer if you don’t suspect it you can’t detect it #netcancerday

Mike Taube

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