Advocating for your care and yourself after a cancer diagnosis is so important. Now is not the time to be shy or timid. Ask any and all questions, don’t be embarrassed and don’t apologize. The more you know, the more everything makes sense. I find medical journals and science interesting, but you don’t need to have a love of science to understand your tumor. You want to know the treatment you’re receiving is the best targeted treatment for your tumor type.
Get yourself a binder (or some hospitals/clinics will give you one, so ask!). Ask for copies of your labs and scans. As you see different doctors your copies will come in helpful because undoubtedly someone will ask you about a lab or scan you had and you’ll have it right there handy.
Keep the following tips in mind while you advocate for the best possible outcome for yourself!
If you don’t click with your doctor, find another one! I can’t stress this enough. This doesn’t mean they are bad doctors or don’t know what they are doing. Your doctors are going to be in your life for quite a while and you want to like and trust them. Speak up and find someone else!
Research your disease. Don’t depend on gathering all the information about your disease just from your providers. Look it up for yourself – is your tumor fast or slow growing? What stage is it? Look for stories of survival, this will help! Do the treatment options your providers are giving you align with what you’re finding with your research?
Take Notes at your appointments. Bring someone along with you to help take all in the information in. One time I forgot my notebook, and I didn’t want to forget what my doctor just told me so I borrowed his pen and used the exam table paper to write notes on.
Study your medications – what are normal side effects and which are more serious or life threatening? There is a difference between a true allergic reaction and a side effect. Be your own advocate and know what you’re putting in your body.
Know your health insurance plan – what are your co-pays, deductibles, etc. This is very important so you’re not sent out of network accidentally and end up with higher bills.
Ask for help, and be accepting of yourself when you need it. I don’t like to be doted upon, so I had to learn it was okay. You’re already a survivor. And we don’t survive on our own!
God bless you!
Jules