Mayo Clinic Misdiagnosed & Denied Me Treatment for 2 Cancers
JACKSONVILLE, FLORIDA -- I was misdiagnosed and abandoned at Mayo Clinic Jacksonville, Florida after three (3) plus years as a patient there. I was denied treatment and follow-up care for two types of cancer after I was finally, correctly diagnosed. I have a family. I am a mother of four. I am a wife. I believe in God and Heaven and I have a lot to live for. I love my life and I want to live to see my youngest children grow up.
Visit www.ShameOnMayo.clinic as well to view my story & find cancer support resources.
I want to spread public awareness about GIST Cancer and Thyroid Cancer, share resources to help other cancer patients & ALL patients. ALL patients have the right to compassionate care, timely diagnosis and financial assistance if needed. Click on the “RESOURCES” Tab for information
My ordeal with illness and Mayo Clinic has been crushing but has not completely crushed me. I feel like a tiny ant under the heel of Goliath. I feel that my life had no value to some at Mayo Clinic and I was thrown away like a piece of garbage. But, I am blessed to have found the best of medical care and the utmost compassion from the doctors and staff at Memorial Sloan Kettering Cancer Center in New York, NY which restored my faith that there are medical professionals who have maintained their humanity and have good hearts. Read “CREDIT WHERE CREDIT IS DUE” below.
I want to warn others about Mayo Jacksonville’s administration’s pervasive culture of defensiveness, lack of compassion for me and their blatant, harassing collections protocol and denial of care to me. I know other patients that had very similar experiences but they need to speak up for themselves. There is an obvious, prevalent, pompous attitude with the administration and the financial services department. The physicians, whose attempts to provide patient care and treatment, are ruled with an iron fist by Mayo’s administration and financial services department. My oncologist, a sarcoma specialist, was forced to abandon me by the administration at Mayo Clinic.
This is my story
I was diagnosed with GIST Sarcoma (gastrointestinal stromal tumor), a rare, orphan cancer that does not respond to traditional chemotherapy nor radiation. I also was diagnosed with the common form of Papillary Thyroid Carcinoma but with the rare, aggressive Columnar Cell Variant. I was repeatedly dismissed and denied tests & care for the thyroid lumps that I asked Mayo to ultrasound and provide an endocrinologist for. I had an ulcerated, bleeding, cancerous tumor that hemorrhaged for five (5) years and nearly killed me a few times. (My hemoglobin went up the day after my GIST tumor was removed & has remained normal & the highest it’s ever been). I was under the very nose of a Mayo hematologist and oncologist for more than 3 years and had two undiagnosed serious cancers and he misdiagnosed me. Then he abandoned me and did not see me anymore. I would be seen by a different doctor or a Physician’s Asst. each time I went to Mayo. I never knew who I would see and was prescribed IV iron infusions in chemotherapy and they did not really know why I could not keep my blood counts up or really why they were administering infusions or why I was bleeding internally. I was hospitalized in Mayo with active GI bleeding proven by tests in the ER and in hospital and Mayo missed my bleeding tumor every time. The region of bleeding could be seen on a test but Mayo’s hospital doctors missed it. I went through countless endoscopies, colonoscopies, camera pill studies, nuclear medicine scans, angiogram with catheter, and many other procedures when a simple CT Scan revealed the tumor in my small intestine. It was right there the whole time. This entire experience was extremely stressful, frightening, humiliating and racked up needless debt. Note I was also hospitalized with hemorrhages in another local hospital several times over two years prior to being a patient at Mayo Clinic. I had a CT Scan there in 2007 and I may have a CT Scan at Mayo in 2009. I had countless types of scans at Mayo.
I was in absolute fear that I would one day die from hemorrhaging. I was in fact advised by my gastroenterologist at Mayo Clinic that “we have to find out where you are bleeding from. You might not make it the next time you hemorrhage. We could lose you”. I had in fact almost died in another hospital prior to being a patient at Mayo Clinic from two separate massive hemorrhages. NOTE: this Mayo gastroenterologist is an excellent, caring, good doctor. He was my only true advocate at Mayo Clinic and he wanted to help me.
He stated “I don’t think the way you are being treated here is right; I am going to discuss your case with the board at our next meeting”. This would not be the first time a Mayo physician with good values and a good heart would sit in front of me and apologize to me. After I was diagnosed with GIST Sarcoma, I was assigned to a new sarcoma specialist. He stated he was “sorry for what I had been through and he would be sure I had better care, that he wished he had met me three years prior as he would have suspected and looked for GIST Sarcoma, that I had every symptom of GIST Sarcoma”.
If this isn’t telling, I don’t know what is.
DAMAGE CONTROL – TERMINATING PATIENTS’ CARE & TREATMENT:
MY CARE AT MAYO CLINIC JACKSONVILLE, FL WAS COMPLETELY TERMINATED after I was diagnosed with the two cancers. I believe Mayo Clinic’s administration went into damage control and got rid of me to avoid potential legal repercussions. They know mistakes were made and they worked to get rid of me. My own oncologist, a sarcoma specialist, who was newly assigned to me in my last months at Mayo Clinic phoned me himself to “warn me that he had been approached by the administration that they were going to terminate my care due to a lack of mutual trust and my bill”. He stated “I want to be your doctor. I think it is wrong what they are doing. There is not a sarcoma specialist in this region but I will help monitor your CT scans for you if you like and I know a couple of oncologist in the area that I will call and talk with for you. I will ask the administration to reconsider.”
I never heard from my doctor again.
I was heartbroken, terrified and crushed that a healthcare organization would treat a patient like this. I had expected that Mayo Clinic would own their mistakes and ensure that I received better care which my new sarcoma doctor wanted to do. The ethical course of action for Mayo Clinic’s administration to have taken for me would have been to APOLOGIZE in addition to financial services working with me to reduce the bill rather than kick me to the curb knowing full well I had an UNTREATED cancer of the thyroid that would require surgery and radiation therapy and possible other therapies afterward. I am still undergoing treatment for the thyroid cancer for which I was denied by Mayo.
SPEAK UP FOR COMPASSIONATE CARE
IF YOU ARE A MAYO PATIENT and experienced similar circumstances know that you have rights as a patient. SPEAK UP! Do not allow Mayo Clinic to bully you. You deserve respect, COMPASSION and proper medical diagnosis and care. If you cannot pay your bill, you have the right to apply for financial assistance. These are things Mayo Clinic did not provide to me.
MAYO CLINIC’s PATIENT LIAISONS
I phoned patient liaisons several times while a patient at Mayo Jacksonville. I expressed my fears and concerns that I was not getting better. I shared my humiliating experience with a very rude, abrasive, pompous doctor in their gynecology department who misdiagnosed me and recommended a needless procedure and/or surgery. I also complained about the harassment I experienced with financial services. I also asked to speak with the President William [snip] at Mayo Jacksonville who ignored me. Patient Liaisons did nothing to help me and did not advocate for me in any way that I am aware of. I believe that the Patient Liaisons served only to accumulate information and complaints from me which launched Mayo into defense mode and damage control then terminated my care.