Patient Wisdom

Patient Wisdom

Although many in our community share tips on Facebook, not everyone uses Facebook. Plus, amazing recommendations get buried beneath new Facebook posts until the next time that same question is asked. So we decided to create an archive of advice for patients, by patients. 'Words of Wisdom' from almost 100 people with a hereditary colon cancer syndrome have been collected through an online survey. Click on a question below to read their valuable insight!

 

If you would like to submit answers to any of the Patient Wisdom questions, please click here to take our survey. 

General

1. In what ways have you DEFIED your syndrome and lived your life to the fullest? ANSWERS

2. How have you overcome what was originally a challenge? ANSWERS

3. What advice would you like to pass along to those who are newly diagnosed? ANSWERS

4. When your syndrome gets you down, how do you get inspired? ANSWERS

 

Family Matters

5. Given the potential for passing on your genetic condition, what consideration have you given towards having children? ANSWERS

6. Can you share any tips for convincing reluctant family members to be screened? ANSWERS

7. What tips can you share for discussing genetic conditions with children? ANSWERS

 

Genetic Testing and Genetic Counseling

8. How has genetic testing benefited you and your family? ANSWERS

9. What age were you tested? Would you recommend that age? ANSWERS

10. How did you benefit from working with a genetic counselor? ANSWERS

 

Your Medical Team

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

12. Do you have advice on getting an insurance referral to see an expert? ANSWERS

13. How have you benefited from being a part of a patient registry? ANSWERS

14. What influenced your decision to participate in a clinical trial? Would you do it again? Would you recommend that others consider a clinical trial? Why? ANSWERS

15. Do you have any advice on asking for a second opinion or another doctor? ANSWERS

16. How do you prepare for a doctor's appointment to ensure the best care? ANSWERS

17. Do you take anyone with you to your appointments? Why? ANSWERS

18. How do you advocate for your health when you meet with your doctor? ANSWERS

19. Are there any alternative medical practices you would recommend? If yes, why? ANSWERS

 

Your Support Team

20. Where do you turn for support? ANSWERS

21. How has a support group helped your physical, spiritual, or emotional health? ANSWERS

 

Your Diagnosis

22. Did you have any symptoms that were overlooked or misdiagnosed? What were the signs and symptoms that finally led to your diagnosis?  ANSWERS

 

Treatments and Surgeries

23. Do you have advice to help others expedite their diagnosis? ANSWERS

24. Do you have any advice regarding a particular surgery or treatment? ANSWERS

25. How did you decide on which treatment or surgery to have? Do you have any advice on preparing mentally, emotionally, or physically for surgery? ANSWERS

26. What do you wish doctors had told you before your surgery that you had to learn the 'hard way’?  Do you have any advice on adjusting to your new body? ANSWERS

 

Diet and Nutrition

27. Do you adhere to a special diet? Why, and how has it helped? ANSWERS

28. Have you had success with any dietary supplements? How do you stay hydrated? ANSWERS

29. What do you do to help reduce your chances of polyp growth? ANSWERS

30. What’s your best tip for reducing trips to the bathroom? ANSWERS

31. What’s your best tip for colonoscopy preparation? (Humor is always welcome!) ANSWERS

 

If you would like to submit answers to any of the Patient Wisdom questions, please click here to take our survey.