So much attention is given to you at diagnosis and during treatment. Not as much when you finish your treatment and are attempting to regain your life. But that is about to change. By January 1, 2015 all accredited local community cancer programs must provide cancer patients with a survivorship plan when treatment is completed. The plan will outline your follow-up care and provide a 1-2 page summary care plan that will be available for you to give to your primary care physician. But in the meantime, we still need to be our own best advocate, so read on.
This past week I attended two workshops at LivingWell Cancer Resource Center on after cancer care and want to share my findings with you. Oncologist Dr. Janet Chin tells us that there are 12 million survivors living beyond cancer. This is a large group and if you are a survivor and haven’t gotten yourself organized, there is no better time than now.
Jillian Smallwood, Program Director at LivingWell shared many great resources and tips with us that I’ll pass along.
TIP #1 – Record your medical history. Here are some resources Jillian suggested and I’ll put some additional ones in as well.
Cancer101 – has a binder with inserts available for $20 plus P & H
Livestrong – has a Guidebook to navigate you through recording your treatment, feelings and more. Cost is free, but there is a fee for shipping and handling.
American Cancer Society has a free expandable folder to keep all your records in and is available at any ACS location. They also have a Life After Treatment document to give you a solid foundation of after care.
National Coalition for Cancer Survivorships has a cancer survivor toolbox that has an audio companion.
Minnesota Cancer Alliance has an online free .pdf you can download to record your medical history and get you started and a Cancer Survivor Plan.
What does a good after care plan look like? One example is from Journey Forward, which has online tools to help me get started, however the download is for a PC and I’m on a mac, so I’m not sure how useful most of it will be unless I can find a PC to take a look.
TIP #2 – Keep an explanation of benefits as long as you have a balance on your care. This is called an EOB and reports can be found online or are mailed to you from your insurance company. Read your plan, know your plan and what is should be covering and ask questions if something doesn’t look right.
TIP #3 – Communicate with your healthcare team. Questions? Write them down BEFORE your appointment and don’t leave until they are answered. Bring along a scribe or recorder app on your phone to take notes so you can really listen to what the doctor is saying.
TIP #4 – Update your Primary Care Physician – once your cancer treatment is finished, make sure your PCP receives a summary of your cancer care and treatment records. This should include a list of all medications taken, any new allergies and current side effects.
TIP #5 – Take Care of Business. Organize and file all your medical records. Do the same for all your personal records and take an inventory of your assets and plan your estate. The Cancer Legal Resource Center is a great resource, especially if you are temporarily or permanently disabled due to cancer. Don’t forget about Advance Directives like Five Wishes.
If you are also looking for ways to reduce your risk of cancer recurrence, try reading my blog 10 Ways to Minimize Your Risk for Breast Cancer and if you want some quick healthy tips from my friend, Chef Jen, check out this blog with her.