Name and Shame
Name and Shame

MAYO CLINIC REVIEW

Complaint
#5YEK7

This complaint was posted on NAS on 24th Mar, 2022 and is a permanent record located here: https://www.nameandshame.com/mayo-clinic-5YP1F/horrible-experience-id5yek7 .

NameandShame Author
SjUicbu
24th Mar, 2022

A horrible experience

While we have had many exceptional experiences at Mayo Clinic both with their physicians, surgical skills and professionalism, this incident at Mayo Phoenix was appalling and left us scared to work with Dr. Mohamed Sonbol in support of our lives in the Medical Oncology department. My husband was diagnosed with a horrible disease that has high levels of morbidity – Pancreatic Cancer. This diagnoses has been very difficult to deal with from the start for the whole family. From the start, this fellow MD treated us respectfully and we felt he gave us his support as an MD. My husbands FDA approved 1st line treatment appeared to be working where over time it failed “Folfirinox”. After this, my husbands CA19-9 had sky rocketed from 112 at the time of initial diagnosis at Mayo to 900 after this first line concluded. Also, the FDG uptake levels increased by over 25%. We were offered a second line treatment of Gemcitibine, Abraxane and Cisplatin. The success rate of this treatment is roughly 15% positive outcomes. We expressed our concerns with the chosen treatment and in fact after only one week of administration, the tumor began to spread to the bowel and the CA19-9 marker reached 1000. An alternate regiment was not given. We sought out alternative care and my husband completed a line of SBRT treatment elsewhere. Afterwards, our goal was to allow Mayo to monitor results month to month and allow us the opportunity to meet with an esteemed surgeon at Mayo Rochester named Dr Truty. He has altered the lives of so many people and given them years to live and provided his patients with the hope of long term survival. We were hoping that perhaps my husbands tumor would be deemed resectable and if not, live to enjoy life without constant chemo treatments that prevented him from any form of quality of life and then move into a clinical trial with an immunotherapy drug that would give us hope or moved to a new line of treatment after perhaps up to 2 years that got approved simply as a timing factor of evolution of medicine. We returned to Dr Sonbol for observation post the radiation therapy and the visit was just horrifying. He indicated that he “would no longer act as the quarterback on our behalf” between the surgeon at the Rochester location and Phoenix location. We asked how this spoke to quality of care as a wholistic approach in the best interest of the patient? We were happy to meet with Dr Truty to discuss his assessment on resectability, but the way we were spoken to raised the hair on our necks and we would have expected a wholistic patient approach between the two sister locations. He continued to chastise us about having “too many cooks in the kitchen” and going to the other institution which met our needs and completed the SBRT treatment. He insinuated that we should leave Mayo Phoenix and get further treatment elsewhere. We as patients have the right to seek multiple opinions and use other avenues which may lead to life changing events with this horrible disease. His tone and demeanor left us trembling and very uncomfortable. While we have no desire to leave Mayo and choose to remain in AZ, we expect the highest quality of care and hope this new attending physician is reprimanded and a new Medical oncologist assigned to our critical care. We cannot guarantee that we will not travel to other institutions as they all have varying clinical trials and may serve our purpose to save the life of my husband. We do however, expect the physician at Mayo researching trials on clinicaltrials.gov and working with us to save a life. Yury and Renee A.


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