Cancer treatment: Best tips for getting organized?

When I began my treatment journey, I used two methods of organizing. I kept hard copies of every chemistry lab test, hematology results, imaging scans, office visit in three ring binder with labeled index tabs. This was very helpful in quickly finding information needed for when I was applying for a clinical trial. I also scanned each document in my computer and placed in a hierarchy of folders under the heading “Medical” followed by the year. .Medical bills, health insurance, long-term care bills. Medicare statements, PCP and urgent care were also kept in a notebook in chronological order. This helped in checking if a billing error or double billing occurred. I also created an Excel spreadsheet and entered the billing information making it easy to determine the total for medical, dental, Insurance premiums when doing income tax medical deductions.

Great ideas. I have all my CDs of diagnostic imaging studies. Keeping the medical documents separately and in chronological order seems like a great idea. My saved documents on my lap top are in a file "Pancreatic file". Haven't backed it up on a thumb drive. I haven't made a notebook to carry hard copies with me but this is a good idea. Your organization with your medical bills is impressive. It makes sense to keep the medical education, explanations, etc seems like a separate file. I wanted a record of all my chemo records. These are paper documents so I scanned the hard copies and saved as a file, keeping the hard copies in a paper document.
Thanks for sharing your ideas. Hope your treatment continues to be effective.

Great ideas all around. My center has an online portal that shows all reports, trend lines, etc. I probably shouldn’t rely on it but I do. After 2 years it is just too much paper!
The one thing I do religiously is wait for a copy of my scan to carry with me. I have these readily available and take with me to meetings with new doctors.

Hello, fellow teacher!

Great ideas from the other folks! I can only add a few ideas:

1. Print another paper copy of the report from the scan, and fold it up and insert it into the CD holder with the actual hard copy of the scan. Take them to the doctor appointment.

2. Have a truly simple, back-up organizational plan in case you start to feel so sick that you can't keep up with your "real" plan for a period of time.
I keep color-coded plastic baskets: red for urgent; green for money related papers; blue for Blue Cross insurance; pink for gynecology/mammograms, etc. When I feel okay, I try to file the items in the basket.

Just like in our classrooms, if the system is too complicated, then it won't be helpful/time-efficient/used.

I mostly keep paper records. It's too hard and too time-consuming for me to do both paper and computer.

3. Keep a separate medical calendar with doctor, procedure, location, reason, status (paper work pending/ paperwork completed) and (results pending/ results returned). Sometimes I jot down symptoms in pencil. I color code my appointments: red for appointments; green for treatments; blue for scans. I am very visual.

4. My insurance was complicated- referrals, pre-authorizations, capitations, and more. I made a tracking sheet master and printed one for every procedure. As the tasks were accomplished, I checked them off on the sheet. When all the paperwork was in order, I marked it in my calendar, so I knew beforehand that billing should be in order. Some scans can be really, really expensive if you don't follow the insurance rules.

Do what you can to stay organized, but remember that you are paying for the doctor's office staff, too, and they are supposed to keep on top of your records and insurance. Some of them are pretty good but not all. The patient portals can be helpful, if they are up-to-date.

See if you can get someone else to be in charge of the money and bills and insurance. If they can't be "in charge," then maybe they can learn your organizational system and help with clerical duties.

Good luck in your journey!

Great ideas. I kept hard copies of all my breast cancer 6 yrs ago which are now in a bin
Thankfully now like gamaryanne i have a portal
And jot things in a journal / calendar book. When I got my second opinion. I got cds of scans from my hospital to upload to johns hopkins .. and my hospital sent them my records . Im being treated at miami cancer institute. Its an affiliate of MSK in Ny
But I like the color coded bin idea for all the other stuff that doesnt get filed quickly!

There is a chemo log that the clinic keeps detailing each infusion session, each chemo agent, dosage, time infused, etc. It was not in my patient portal so I had to specifically request it. It was needed for when I applied for a clinical trial.

You are amazing with your organizational skills!

Thanks, Garden Lady!
I sure don't feel that way, but I have to give credit to all of my fellow teachers who shared their organizational tricks with me. People don't realize how much organization it takes to run a classroom, or, for that matter, to run a household, both of which fall primarily to women. I wonder, is there a connection? Haha

A word about patient portals. Some are better than others, AND some doctor's offices are better than others at updating the portals. Watch yours carefully. Unfortunately, I have 5 or 6 patient portals, and they don't share with each other well. Sorta like toddlers, or ornery teenagers.

My most accurate patient portal is from my health insurance, at least for stuff that costs them money.

Have a good day!

I agree about the portals. MSKCC and my local hospital post the doctor's notes, x rays, labs as soon as finalized. Xray finalizes very quickly. The labs from my PCP, different patient portal, don't download well. I use Quest labs good patient portal, labs are turned around quickly, I can generate a PDF easily. I can also send to MSKCC uploading the tests done locally. Trying to keep all the doctors on the same page. Depending on someone else to transmit information can be iffy. On the organizational front, I have a friend who is a teacher and it is quite a challenging job, I had no idea. Hats off to you for your work as a teacher and for sharing your organizational expertise with the group.

Hi Garden Lady,
Thanks for the acknowledgement. Teaching is a very rewarding profession, and I miss it very much.
Have a good day!