22: PTC: 10 Best Practices

While we do not offer advice, the following are from the research in collecting information about Post-transplant higher risk of cancers,  best practices in dealing with that risk from medical professionals we interviewed and patient feedback on what worked in their personal PTC lives.

Note: For full versions of any of the INTRO video clips below, go to the full library of ONLINE resources at https://www.triowebptc.org/link/resource-library.html

Practice #1.  Understand and acknowledge that with your organ transplant there comes a higher risk - as much as 50 times higher risk - than the normal population of getting cancer. This risk level depends on several factors such as: advancing age, longer years of survival post-transplant, ethnicity, immunosuppressant medications and type of organ transplant.

Practice #2. Being proactive in prevention, early detection and treatment of cancers post-transplant will typically result in minor treatment procedures with high probability of full recovery with minimal pain and inconvenience. The alternative of not being proactive in those steps can dramatically reduce your life expectancy post-transplant.

Practice #3: Know and follow a schedule of regular testing for early symptoms of cancer - i.e. annual tests prescribed by your transplant team (unique to each type of organ transplant), regular self-exams using well know processes for skin cancers, etc. adherence to your transplant program's follow-up visits).

Practice #4. Follow your transplant team's advice in their referrals to cancer specialists with transplant experience - you are special and need the benefit of medical professionals that regularly treat and work with fellow transplant recipients to know how to look for conditions that are more prevalent and faster growing in immune-suppressed transplant recipients.

Practice #5:  Write down a few key goals you are willing to commit to from the best practices listed here and track progress against those goals.

Practice #6: Maintain careful and full compliance in following your transplant team's directives, especially in taking medications exactly as prescribed in time and dosage.

Practice #7: Stay active both physically and mentally every day, reporting any unusual symptoms promptly to your family doctor and/or transplant team - better safe than sorry!

Practice #8: Keep a regular schedule of appointments and testing.  

Practice #9: Maintain an ongoing list of questions for your doctors and bring that list with you as reminders when you see them. Be sure you understand what that team is telling you and if not sure, ask again until it is clear. If you don't fully understand, they are not doing their job right and it's your life that is at stake.

Practice #10: Remember that you are the most important member of your medical team, the only one on-duty 24 hours every day who knows how you are feeling even beyond what testing and your medical team can see and feel. Be open, attentive (some even bring a recorder to insure accurate capture of the meeting), firm and assertive in dealing with all your support resources, including caregivers, family, insurance and medical staff. They are all your 'employees' and if not performing as you need, can be fired or replaced with another who can match your style and needs better.

1st. Print out the list of best practices and compare your own current way of doing things, checking off each that you already do.  Now challenge yourself to add the remaining actions to your habits and continue to enjoy a long active life post-transplant.

2nd. Do you have more thoughts on this list?  Help others by submitting your own 'best practices' to info@trioweb.org using the subject line "PTC Best Practice suggestion" for consideration to be adding them to the published list above.

3rd. Check out this topic on our blog to see if you can engage others with your ideas and learn from their experiences.

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