Patient Wisdom
Question 3: What advice would you like to pass along to those who are newly diagnosed?
A Lynch Syndrome diagnosis is certainly not good news, but it is not necessarily a cancer diagnosis either. I have Lynch positive siblings and other relatives in their 40s and 50s who have never had cancer. Your diagnosis does mean that you have to take control of your health care. Make sure you know which screenings are important. - Brenda Harbin
Stay positive! Put your own stamp on the disease. I made an ostomy belt with my favorite sports team logo, ate fun ‘last meals’ prior to my surgeries, and made FAP motivational mix tapes. Own your disease and make it your own in a positive way.
- anonymous
You need to become your own advocate, educating yourself as much as possible. Your FAP journey at times will be a lonely one, however. Just know that, through the [Familial Adenomatous Polyposis Foundation], you have a great support system. Team yourself with knowledge, FAP-educated doctors and other FAP friends. Don't try and do this alone. - Michelle Sutter
It’s not the end....it's a new beginning, chapter, or whatever you want to call it. It changes your life forever and acceptance is difficult. Let family and friends help you. - Lara Breunig
First, learn everything you can about FAP and your treatment options. Second, leave no room for shame or embarrassment in accommodating changes you must face, so as not to inhibit your discovery. Third, rely on your fellow travelers. This is a smart bunch of people, often better informed than many healthcare professionals about FAP. Don't panic! - Frank Rider
Every person's journey is different, make it your own so you can find what works for you. - Jenny Jones Bay
Meet people with your disease. Before 2013, I had never met another person who had my disease outside of my own family. I can't really describe what that it feels like. But seeing that there are others out there who are going through the same things as your family made me feel like I wasn't alone. - Alyssa Zeigler
Learning to deal with HCC diseases will make you emotionally stronger. - Tiffany Probus
It’s OK to feel angry and upset at any point throughout the process but, it will pass…so stay away from breakables in those moments. Nail polish makes a fantastic stress reliever! F.A.P. is not well known in the medical community which means you need to be your own advocate! When you feel up to it, please research your diagnosis/treatment plan! - Dakota
Get a genetic counselor and ask for resources. Try to get linked with doctors who only specialize in polyposis disorders (they are out there). Try to get linked with someone who has the disease as well. I did both and it helped tremendously! - Brian Hanson
Find out everything you can about [your disease], and find the best team of doctors to help you live the best possible, fullest life. Have a strong support system, and don't let the condition control you, you control it! - Kelly Livingston
Get all the things your worried about and but them down on paper. Don’t be afraid of asking 101 questions [if] needed. Talk with others that have your same issues and lean on each other. - Paula Jackson
You have to be an advocate for your own health. A lot of providers will make recommendations based on what they know and can treat. Find an expert and don't be afraid to get a second opinion. It is your body! I would've had the wrong surgery if it wasn't for getting a second opinion. - Brooke Porretti
Know the statistics and be informed by them, not ruled by them. - Samuel Duckworth
Stay positive…strong mind=strong body. - Karen
Don’t let the issues associated with FAP get you down. Think of your guts as a plumber would think of a septic system and consider the surgeries as re-routing the septic system of yourself. LAUGH! Take time for you. LAUGH! Pray too! - Betty Starr
Have the healthiest diet and lifestyle possible. If nothing else, I feel being fit and healthy helps the body cope with surgery, etc.
- Naomi Riches
Try not to let it rule your life. Form a plan to do what you have to do and don't obsess on it in between. Allow yourself to be free of the worry. - Linda Warner
A positive genetic test is not a death sentence. Knowledge is power; take control of your health and healthcare. - Jody Drummer
Follow up with all of your doctors regularly. Ask questions. Do some research, but don't believe everything you read. I choose not to get caught up in the negative chatter that is out there. - Janet Weistock
Talk to your GI and surgeons in depth. Know the treatment options and reasons [why they] can be good options for you. Read and study; seek advice from others that may have had to make the same decisions. - Ed Minor
If you hear a negative experience, remember [that] it’s only THEIR experience and YOURS could be different. - Kari
Stay positive. As soon as your doctor gives you the "ok", get right back to your normal routine. Don't let it beat you. - Theron Perkins
Get the best surgeon you can find that knows FAP; be positive and don't give in to negative thinking. Surround yourself with things and people you love; take time to heal and know that every 6 months you will hit a new high; an incredible journey awaits.
- Sandra Redlands
It's a long bumpy road. If you stay focused and positive and don't give up, you will make it. I've had a rough time but I also have had some good times with my family over the year. They are my foundation, they get me through every bump in the road. You have to remember, there is someone worse off than you. I will always remember that. Don't ever give up. - Anonymous
Advocate for your health/self. Ask questions, speak up. You are an important component in your care. - Morgan
I consider my diagnosis a gift. Because I've been diagnosed, I can get and have received treatment that family members have not. My mother was diagnosed with stage 4 cancer in her 50's and my grandfather died in his 50's. Knowing I have FAP has allowed me treatments and care that will potentially give me the chance to enjoy long fulfilling life. - Tammy
You will get through it. I didn't think I would and I'm slowly making it through. I'm on my second ileostomy due to scar tissue balling up my small intestines and causing a stricture right above my j-pouch. My first ileostomy got reversed too soon. - Whitley Buckles
Find a specialist that you can trust. - Kathryn Howard
Allow yourself to deeply feel all of those initial feelings that getting such a diagnosis entails, but as soon as possible, try to communicate with others who share your disease so that you have emotional support. Next, make sure you have access to the best medical team and facilities that are familiar with your disease, and lastly, educate yourself. - Suzanne Pilon
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