Go To Main TNBC Website


  New Posts New Posts RSS Feed - Medical Binder - The Organized Patient
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

Medical Binder - The Organized Patient

 Post Reply Post Reply
Author
 Rating: Topic Rating: 1 Votes, Average 5.00  Topic Search Topic Search  Topic Options Topic Options
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 12867
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Topic: Medical Binder - The Organized Patient
    Posted: Jan 23 2013 at 7:17pm
I follow a bc blogger, Lisa Bonchek Adams.  She offers some good advice, especially for those newly diagnosed.  We've talked about this subject before and Mainy has offered many tips too.  In addition to the binder, I found a plastic file tote box helpful where I can store hanging files with all my information.

The Must Have Medical Binder - The Key to Being an Organized Patient.

Perhaps the most common question I get asked by email is, “Someone I know has been diagnosed with cancer. What can I do?” Today I offer one suggestion. I believe this would make a wonderful gift for someone who has just been diagnosed and is a necessity if you are the patient.

Being organized is one of the best ways to help yourself once you’ve been diagnosed. When you first hear the words, “You have cancer” your head starts to swim. Everything gets foggy, you have to keep convincing yourself it’s true.

But almost immediately decisions need to be made — decisions about doctors, treatments, and surgeries. Often these choices must be made under time constraints. You may be seeing many different doctors for consultations. Medical oncologists, surgical oncologists, radiation oncologists, recontructive surgeons, internists— there are many different voices that you may hear, and they may be conflicting. It’s hard to keep it all straight in the midst of the emotional news. Not only are you likely to be scared, but also you are suddenly thrust into a world with a whole new vocabulary. By the time you are done with it, you will feel you have mastered a second language.

You can help your care and treatment by being organized. Especially if you are juggling different specialists and different medical facilities, you must remember that the common factor in all of this is you. It’s your health. It’s your life. I believe it’s important to travel with a binder of information about your medical history and treatment, as well as notes and questions.

This binder will mean that all of your information about your cancer will be in one place. This will be your resource guide. I cannot tell you how many times physicians have asked about my binder and said when I was able to produce test results, pathology reports, or other information they needed, “I wish every patient had one of those.”

 

I suggest the following:

A heavy 3-ring binder

I think a 1.5″ binder is a good size to start. This size will allow you to easily access reports and pages and have room for the calendar. It will look big at first but you won’t believe how quickly you will fill it up.

Colored tab dividers

I like these to be erasable. I think 8 is the minimum number you will need. If you have a lot of specialists you will need more. The categories you think you will need at the outset may change. It’s easy to erase and reorganize them. Put the categories you will be accessing the most in the front so you aren’t always having to flip to the back. Once the binder is full it will make a difference.

Some starting categories:

  • schedules (dates of appointments you have had, when the next ones are due, and how often you need certain tests done)
  • test results/pathology (it’s very important to keep copies of MRI, CT, and pathology reports so that you correctly tell other doctors what your diagnosis is. For example, new patients often confuse “grade” with “stage” of cancer.)
  • insurance (keep copies of all correspondence, denial of claims, appeal letters, explanations of benefits)
  • articles and research (handouts, post-surgical information. Ask if there are any websites your doctor does approve of. My own oncologist said, “Do not read anything about cancer on the internet unless it comes from a source I’ve told you is okay. There’s a lot of misinformation out there.”) Keep your post-surgical instructions, any info given to you about aftercare.
  • radiation/chemo (keep records of exactly what you had done, number of sessions, dates, drug names, etc. I also asked how my dose was calculated so I knew exactly how much of each drug I received in total)
  • medications (drug names, dates you took them, dosage, side effects). I also keep a list of all of my current medications as a “note” in my iPhone. That way I can just copy it down and won’t forget anything on the list. You should always include any vitamins or supplements you take.
  • medical history (write out your own medical history and keep it handy so that when you fill out forms asking for the information you won’t forget anything. As part of it, include any relatives that had cancer. Write out what type it was, how old they were at death, and their cause of death. Also in this section include genetic test results, if relevant)

Loose leaf paper

Perfect for note-taking at appointments, jotting down questions you have for each doctor. You can file them in the approporiate category so when you arrive at a doctor your questions are all in one place.

Business card pages

These are one of my best ideas. At every doctor’s office, ask for a business card.Keep a card from every doctor you visit even if you ultimately decide not to return to them. If you have had any consultation or bloodwork there, you should have a card. That way, you will always have contact information when filling out forms at each doctor’s office. For hospitals, get cards from the radiology department and medical records department so if you need to contact them you will have it. Also, you want contact information for all pathology departments that have seen slides from any biopsy you have had. You may need to contact them to have your slides sent out for a second opinion.

This is also a good place to keep your appointment reminder cards.

CD holders

At CT, MRI or other imaging tests, ask them to burn a CD for your records. Hospitals are used to making copies for patients these days and often don’t charge for it. Keep one copy for yourself of each test that you do not give away. If you need a copy to bring to a physician, get an extra made, don’t give yours up. If you need to get it from medical records from the hospital, do that. You want to know you always have a copy of these images.

Keep a copy of most recent bloodwork (especially during chemo), operative notes from your surgeries (you usually have to ask for these), pathology reports, and radiology reports of interpretations of any test (MRI, CT, mammogram, etc.) you may have had. Pathology reports are vital.

Calendar

I suggest a 3-hole calendar to keep in your binder. This will serve not only to keep all of your appointments in one place but also allow you to put reminders of when you need to have follow-up visits. Sometimes doctor’s offices do not have their schedules set 3, 6, or 12 months in advance. You can put a reminder notice to yourself in the appropriate month to call ahead to check/schedule the appointment.

Similarly you can document when you had certain tests (mammograms, bone density, bloodwork) so you will have the date available. I usually keep a piece of lined paper in the “scheduling” section of my binder that lists by month and year every test/appointment that is due and also every test I’ve had and when I had it.

Sticky note tabs

These can be used to easily identify important papers that you will refer to often, including diagnosis and pathology. These stick on the side of the page and can be removed easily. As your binder fills up, they can be very helpful to identify your most recent bloodwork, for example.

Plastic folder sleeves

These are clear plastic sleeves that you access from the top. They can be useful for storing prescriptions or small notes that your doctor may give you. The sleeves make them easy to see/find and you won’t lose the small slips of paper. Also a good place to store any lab orders that might be given to you ahead of time.

 

The above suggestions are a good working start to being organized during your cancer treatment. If you want to do something for a friend who is newly diagnosed, go out and buy the supplies, organize the binder and give it to your friend. He or she will most likely appreciate being given a ready-made tool to use in the difficult days ahead.

I also believe a modified version is equally useful for diagnoses other than cancer. When our youngest son was born with defects in his spine and hands it took many specialists and lots of tests to get a correct diagnosis. Having all of his tests and papers in a binder like this was instrumental in keeping his care coordinated. In fact, at his first surgery at The Children’s Hospital of Pennsylvania they gave us a binder to assist in this process. I know some hospitals do this for newly diagnosed patients already. Maybe my tips will help you or a friend know how to better use the one you already have. You may not need all of these elements depending on the complexity of your case, but I hope you will find some of these suggestions useful.

http://lisabadams.com/2013/01/23/day-23-the-must-have-medical-binder-the-key-to-being-an-organized-patient/


DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Back to Top
mainsailset View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 27 2008
Location: Washington State
Status: Offline
Points: 4952
Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jan 23 2013 at 8:00pm
Thanks Donna, the personal binder is a great way to organize so you can 'find yourself' during the stress of trying to make all the moving parts of your life go back into place. I also have a tab in mine where I put the printout my pharmacist gives me of each med, it's side effects and interactions. I know when I was doing chemo I just couldn't count on my poor brain to remember every little detail I asked of it so the binder was a real helpmate.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 12867
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 25 2013 at 11:42pm
A while back I attended a cancer support community seminar on managing the cost of cancer care.  I wish I had known some of their suggestions when I was first diagnosed.  I thought one of the best advice given was to create a spreadsheet to track all your medical procedures and payments.  For example for each procedure, eg. surgery, chemo, radiation, doctor's visit, etc. track the date of the event.  Then enter the billed charge in one column, the next column enter the amounts insurance paid and/or any discounted/adjusted amounts, the next column your out of pocket expense.  This will help you manage the growing portfolio of medical bills, insurance benefit statements and patient responsibilities.  It will also give you an idea what the total cost of your treatment was, how much insurance covered and how much you paid out of pocket.
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 12867
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2013 at 12:01pm
http://www.cancer101.org/

CANCER101's mission is to empower cancer patients and their caregivers to take control over their diagnoses and engage them as active partners in their care, by arming them with a toolkit to navigate their cancer journey.

We provide CANCER101 Planners to cancer centers in all 50 states to give to their patients and caregivers in need. Our planners are free to their patients and include essential organizational tools and important resources designed to empower patients and caregivers to take control over their diagnosis from the moment they learn they have cancer through the next ten years of follow-up care. Our planners encourage patients to partner with their medical team: questions are asked and answered, notes and appointments are written down in one place, and patients and caregivers feel in control. And just as importantly, the planner gives patients and their loved ones hope.

DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Back to Top
sweetpickle View Drop Down
Groupie
Groupie
Avatar

Joined: Nov 28 2012
Location: North Carolina
Status: Offline
Points: 91
Post Options Post Options   Thanks (0) Thanks(0)   Quote sweetpickle Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2013 at 12:12pm
my binder goes with me to every appointment, it really has been a time saver to have everything in one place.
11/13/12 DX TNBC, BRCA 1+ Grade 3, 4.3cm tumor, susp. node under arm, 4 A/C biweekly & 4 Taxol biweekly
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 12867
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2013 at 12:19pm

Tips for navigating your cancer treatment

By Cancerwise Blogger on January 8, 2013 8:09 AM | Comments (0)

lymphoma patient cancer journey cancer treatment.jpgBy Andrew Griffith

The health care system is large and complex, with its own culture and way of doing things. Understanding how it works, and specifically how your medical team and the system work for you, makes things easier. 

Working for the government has given me insight into the various approval levels, procedures and strategies sometimes required to move things along during my cancer treatment

The following points helped me navigate the system.

Get a second opinion
After you meet with a specialist, who recommends a cancer treatment, the process kicks into high gear. The specialists all work on a team basis, so the process includes an element of agreement and second opinions. 

However, for peace of mind, I consulted with doctors in other hospitals to see if they thought the recommended treatment made sense. These consultations confirmed that I was getting the current, 'state of the art' treatment, and put my mind - and the minds of my family members - at ease.

After my relapse, when I was faced with the higher stakes of an allogeneic stem cell transplant, we sought a formal second opinion from a different hospital. This helped confirm the options and identify some issues with the recommended treatment, which we were then discussed with my medical team. 

Learn to own your file (own yourself)
This may sound silly, but you are the only person who will worry and think about you all the time. Doctors and nurses are juggling many patients, and while they have access to your file, keeping your own parallel file is essential. 

I started keeping all the key documents in a binder. I included my treatment schedule, medication information, test results, contact numbers, important reference materials and so on. I always brought the binder to the hospital and to appointments. That way, whenever I was asked what medication I was taking, for example, I could just pass on the list from the pharmacy.

The health care system is overwhelmingly paper-based, and I was asked the same standard questions time and time again. Having my reference binder ensured that I was prepared and had everything the medical staff needed. I also could give them a paper copy of the information they needed, rather than filling out information again. 

To simplify things even more, I transferred most of my important health records to my iPad so I could avoid carrying the binder. This was particularly helpful during my second opinion consultation, when I was able to call up relevant information as needed.

For more details on what worked for me, see my blog post on organizing your medical file.

Be prepared for clinic (and other) visits

I prepared questions before every appointment and treatment. Sometimes these were as simple as when to take certain medications; other times, I had broader questions about how I was doing. 

During one treatment, for example, I asked my doctor to walk me through my mid-point CT scan. During my treatment for relapse, my questions became sharper, my feedback more direct and my requests and suggestions more blunt. At the same time, I ensured that I was respectful of the team treating me. 

It's not only important to know your file and significant indicators like blood counts. Secondly, 'how do I feel' aspects of treatment also make a difference. My favorite indicator was the 'crumminess' scale, which I used to tracked how I was feeling overall (a 1 being mild chemo taste and 10 being constant vomiting) so my care team could help address any problems.
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 12867
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2013 at 12:21pm
Some more good advice that might help those in our community too.

Tips for navigating your cancer treatment Part II

By Cancerwise Blogger on January 9, 2013 9:34 AM | Comments (0)

cancer treatment lymphoma patient support.JPGThis is a continuation of the tips from yesterday's post on tips to help navigate your cancer treatment

The health care system is large and complex, with its own culture and way of doing things. Understanding how it works, and specifically how your medical team and the system work for you, makes things easier. 

Here are some additional points that have helped me navigate the system. 

It helps to have a partner
There is an incredible amount of information to take in during a medical appointment, and the specialists in particular are pressed for time. Having a second pair of ears at appointments is helpful in understanding and recalling all the key points. 

In addition, when things get rough with side-effects, it's critical to have a partner who can communicate with the doctor on call.

There were several times when I was not fully coherent and couldn't articulate what I was experiencing. My wife spoke to the doctors in these instances, which helped ensure that we were on the same page in all aspects of my cancer treatment.

Make sure to monitor your care
My daily journal helped me remember reactions to medication and flag those reactions when I went in for a repeat cycle. Where there was confusion - such as one week where it was not clear whether I had one appointment or two - I could find answers or, as happened more than once, benefit from a communications mix-up that resulted in a second meeting with a doctor during the same week, helping my case move forward more quickly.

As I became familiar with the hospital and treatment routines, I started to understand the standard procedures and could ask appropriate questions when something was not right.

Given my weak immune system, I was particularly concerned about minimizing the risk of infections, so if the nurse wasn't following what I thought was the standard procedure, I asked -- respectfully, of course --why they were doing it a certain way when I had noticed others doing it a different way. Usually, their answers satisfied me. 

Show your appreciation

Support is always appreciated. The more I recognized my medical team's efforts and took interest in them as people, the more they responded with compassion and made my hospital stays more bearable. 

Repeat yourself
Repetition is very important. I was dealing with a number of different specialists, doctors, nurses and other health care providers. One he hematologist gave me the wise advice that if something was important to me, I had to tell every one of them. 

It was really important for me to be able to drop my son off for his first year at college, for instance. So, I told all the specialists, as well as the clinical doctor and the nurses, about my desire to do so. The specialists first expressed doubt about whether my request could be arranged. But when the whole medical team met to review my file, they decided to adjust my cancer treatment to accommodate my life priority.  

That made all the difference in making me feel like I was a person, not just a number or an illness.

DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Back to Top
Lee21 View Drop Down
Senior Member
Senior Member
Avatar

Joined: Dec 22 2011
Location: Michigan
Status: Offline
Points: 736
Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2013 at 3:44pm
Donna,

Thank you for sharing information on organization and how to get a handle on all of the paperwork related to our treatment.  I can't emphasize how important it is to do this early in the game: although I hope none of us have to deal with recurrences, it happens and it is critical to be able to retrieve information in a timely fashion.

I want to make a few additional suggestions to the very good pointers already noted.  I try to make everything electronically portable:

1) I scan all of my lab results, clinic notes, etc. and  make pdfs so that I can access them on which ever electronic device I want. This way I don't have to run the risk of not being able to access something because I didn't bring my binder (I do keep a binder for hard copies - after 1 year, they have already completely filled a 2 inch thick binder).
2) I find useful to have a word document that contains i) synopsis of my disease: diagnosis, treatment milestones, path results, imaging results; ii timeline of the different treatments I have received including dosages, growth factor support, etc. which I keep current. 
When I seek second opinions (I have obtained 2 so far), I send ahead of my appointment pdfs of what the consult wants, including my word document that summarizes what is known about my disease. This way they can make a quick assessment prior to having to plow through reams of clinic notes and lab results that may take a while to get to the consult if you don't already have them on hand. 
3) Being a numbers oriented kind of person, I put my lab results into an excel spreadsheet and plot up my CBC and other lab tests as a function of time, so I can see, "at a glance", where things are going.  This last thing may be more than what most want to do, but it helps me track how I respond to treatment.
4) Lastly, I have maintained a daily log (a spreadsheet again) of side effects that I have encountered with each treatment since I started neoadjuvant chemo almost a year ago.

A big part of doing this is that it makes me feel I am in control of my disease and treatment and that I am my own best advocate.
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
Back to Top
Boo View Drop Down
Senior Member
Senior Member
Avatar

Joined: Feb 05 2012
Location: canada
Status: Offline
Points: 171
Post Options Post Options   Thanks (0) Thanks(0)   Quote Boo Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2013 at 4:14pm
I ask for my printed blood results each time I have treatment.  I have since the start.  I was able to convince my current team that my neutrophils are at a constant low.  My normal level before diagnosis was 2.2.  I even graphed my levels but the nurses smiled at me and brought me their graph from the trial.  They do run more data that we may not know about.  Anytime I have asked, they are pleased to provide the information.  I use my blood levels to avoid having my blood taken at appts. here in Canada as well.  If the results are within the week (or recent anyway) I usually do not have to have my blood drawn again.  So my binder includes all of the above and my section on bloodwork.  My binder is very useful during phone calls and for insurance companies looking for documents.
dx 12/2010 age 50 TNBC 12 X 9 cm tumor 1 node, 3 X FEC 9 X Doxitaxol with concurrent rads - 2X3 cm residual tumor 20/1/12 mets in lungs METMAB trial May 7 to Oct. 21, CHK1 /Gem trial 26/12/12 fails
Back to Top
Grateful for today View Drop Down
Senior Member
Senior Member
Avatar

Joined: Sep 21 2011
Location: U.S.A.
Status: Offline
Points: 1835
Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: May 17 2013 at 11:19pm
Bumping up for members who have joined since the end of January, 2013.

Great ideas/suggestions above.   Donna, thanks for starting this thread.

If one doesn't have the energy to start a binder/notebook right now, maybe consider keeping
reports/copies of everything related to your care in a few labeled folders.    Then, one can always
put the papers in a binder as one has kept ALL papers in one place.

Before one requests a report or part of one's medical record, consider calling and checking about
cost........and what are the "words" for a free copy.   Some places will give free reports to patients
as long as one states one is the patient and completes the release form. Other places, will provide
free reports when request is for "personal home medical record" or "continuation of care" or
whatever are the "free report request terminology" for that center/institution.

If one is past treatment and does not have a copy of reports, one can take the time now and
get:   pathology reports, OR reports, summary of labs, mammograms/ultrasounds/other imaging
tests, copy of chemo protocol one had (not just AC-T or TAC but the actual milligram dose) and
radiation treatment plan (such as chest wall/axilla etc and total number of cGy given)

If you have other tips/suggestions, please share.


With caring and positive thoughts,
Grateful for today..............Judy



Edited by Grateful for today - May 17 2013 at 11:21pm
Back to Top
Grateful for today View Drop Down
Senior Member
Senior Member
Avatar

Joined: Sep 21 2011
Location: U.S.A.
Status: Offline
Points: 1835
Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Jun 22 2013 at 2:35pm

Helpful information/ideas in this thread.
Bumping for new members who have joined since thread was last "bumped" *


Grateful for today.............Judy

*   From http://forum.tnbcfoundation.org/abbreviations-on-forums_topic9524.html
“bump”      When one posts on a forum, it brings the forum topic to the top of list.   
                   Sometimes, someone will write “bump” only to bring an important forum topic to top of list.
Back to Top
 Post Reply Post Reply
  Share Topic   

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 11.05
Copyright ©2001-2016 Web Wiz Ltd.