Patient Wisdom

Patient Wisdom

Question 11: How did your level of care change once you started being seen by a medical team that specializes in hereditary colon cancer syndromes? 

 

Factoid:  There are many specialists throughout the world. Find a one near you on our list of providers. ​

Night and Day. I had a large 50mm polyp discovered in Miami and had a 2nd opinion at Mayo Clinic in MN. Miami Drs recommended removing 1/2 my colon and said it probably was genetic, whereas Mayo was more aggressive and removed the polyp without surgery, tested it for Lynch right away. After more polyps were found, [genetic testing] was recommended. - Brooke Porretti

 

My doctor knew the specific treatment protocols. It made me feel more at ease working with someone who knows what can be expected from this particular disease. - Emily Wilson

 

Our doctor knows the disease so intimately that it helps us to know that Ashlee is getting the best care possible. She has a rare disease, and at a degree that no one has much experience with at her age, so she is a learning curve for all. I love going in and not having to explain her illness to docs. - Tiffany Costello

 

It is key to team with FAP specialists. In the beginning, I tried to use local doctors. However, after 18 months of that, I made the decision to team with the Cleveland Clinic. What doctors don't know will hurt you! Work with the experts. Otherwise, in many cases, you become your own doctor and have to make sure you get all your tests done correctly. - Michelle Sutter

 

My initial GI doctor for the routine colonoscopy immediately recognized I needed specialized expertise for my polyposis. I was referred to UNC Hospital's High Risk Clinic. My GI doctor, my surgeon, and my genetic counselors are all highly skilled and nationally recognized for their FAP expertise. I have always felt my healthcare is in good hands. - Frank Rider

 

I saw specialists at Children’s hospital until I had my colon removed at the Mayo Clinic. I now am solely seeing people at Mayo. Both places have been very helpful with treatments and options. - Anonymous

 

Care became much more focused and thorough. - Kelly Livingston

 

[My level of care] significantly improved, and my anxiety level decreased, because I knew I was in the best possible hands. - Georgia Hurst

 

They are so knowledgable and know what test are needed without me having to ask or do research on my own. - Allison Brewer

 

I was lucky because I had a family doctor, Dr Jose Callueng (God rest his soul), who, in 1988, suspected I had FAP and put me in touch with Dr Charles King at Shands in Gainesville FL. I have had the best care between my local GI, Dr Gregory Mackay, Dr James DiSario, and the staff at the Huntsman Cancer Institute, as I was in their clinical studies. - Betty Starr

 

Due to the complexities of the condition, and family history, my relatives and I only saw the top colorectal surgeon in the major hospital. The medical team was very accommodating to squeeze in all our appointments in one day as we drove 1.5 hours to clinic. It's nice to talk to someone who doesn't look at you as though you have two heads. - Anonymous

 

I didn't have to continually educate my doctors! Mind you, I bring 'challenges' to them and we discuss it openly and honestly. Sometimes I teach them things and [sometimes] they teach me. I trust my Mayo Doctor completely and he [trusts] me. - Charlie Henricks

 

I went from a less than a year death sentence to an open end of staying positive. With yearly tests of the stomach, esophagus, [and] thyroid I should be fine for many more years! - Sandra Redlands

 

Regular check ups, and access to experimental (think cutting edge of medical advancement) treatments. Also, it's nice having a doctor/team that knows how to answer all my questions. - Morgan

 

We went to a neighboring city to receive the best care. When we attempted to receive care where we live, we were met with frustration, as the doctors were not able to diagnose us or provide adequate care. Once we found our team at a cancer facility in a different city, we were very relieved and the doctors there truly saved our lives. -  Suzanne Pilon

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