Posted on: Feb 13, 2010 04:47AM - edited Nov 8, 2017 09:15PM by sas-schatzi
Posted on: Feb 13, 2010 04:47AM - edited Nov 8, 2017 09:15PM by sas-schatzi
My breast cancer was diagnosed in Jan 09. My husband was dx'd with lymphoma in April. The following are some things we learned on our journey. I hope they help. Rather than rewrite everything in sequence, because I missed putting the fax in the rewrite of the outline, I'll put it here. I strongly recommend you get a fax machine. In the very active phase of our diseases, not uncommon to have sent several faxes a day.
VACINNATIONS UPDATE ASAP after diagnosis- shingles, pneumonia, tetanus, whopping cough. I'm concerned right now about reports being circulated about problems with the flu vaccine. Personally,, I won't be taking it until further studies are completed.
DENTIST check up asap after diagnosis. Generally, can't be done after chemo and radiation treatments start
A. Monthly Planner, I prefer the kind you can read 30 days at a time. Allows you see what is going on for the the whole month. More efficient than a 7 day planner.
B. Monthly Planner Contents: place names and addresses in the address section of the planner. Write, doctor and secretary name, phone, fax, office hours, address. You, also, can take a business card cut off edges and tape it in. Add all your health insurance info, inclusive of id#,group#, phone#, address. Add anyonesname that you have talked with that affects your condition. Then make a computer copy of all the same. Make individual lists inclusive of all information i.e. a doctor list, insurance list of contacts. Saves time when someone asks for a list. AND the dreadful occurrence should you loose your planner. I was obsessive about putting, this in the carry binder. I kept binder and planner near phone for quick access for medical phone calls.
C. Ring Binders for Information Storage: 1.medical information: divide by history & physicals, lab work, diagnostic imaging, consultation visits and report. 2. insurance: explanation of benefits (eobs), and bills. 3.Educational: information that you want to retain, organize to preference. 4.Employment: policies, communications from work, consents, disability: short and long term. File any communications from employer and disability carrier. 5.Social Security Disability: application, communications, award letter. This will keep you from drowning in paper and make things easier to find. We had nine binders between the two of us for2009. Label binders on front and side
D. Carry File Binder: It is very similar to the binder sent out by the breast cancer society, but more sturdy. Put copies of following testing that were SUPPOSED to be already presented to the next doc. It's not a duplicate to ring binders. Copy of initial testing and current informatiom from at least six months. Helpful when doctor hasn't received expected information. I was able to hand it to them. Make sure you get back your original before leaving any office
1.Information to include in binder:
a. Before most chemo's/and radiation, they will want you to have a bone density. Put in the first
bone density ever done, this is your baseline. Put in last study done before the radiation. Have PCP evaluate this in depth to track baseline compared to newer studies. Keep for the remainder of treatment. Bone density is adversely affected by many treatments. Needs to be reviewed as new studies are done, by comparing to older studies
b. Blood work--try and have labs all drawn at same facility. Ask them to run them so each week or month are in columns side by side. This makes it very easy to follow trends. Our Oncology center does it this way. Also, make it easy to keep only last 12 months on few pieces of paper. If you go to other specialists, write their lab results on this lab profile. Take labs no longer needed in the carry binder and put them in your medical into ring binder.
c. Keep one copy of you bc pathology report in this carrier.
d. Keep copy of genetic studies
e. EKG, echocardiogram, stress tests
d. xray, ct, pet scan, bone scan reports --most recent report
E. Diagnostic Imaging Reorts: ask radiology center to cut a cd. Pick up only after docter report added. You'll probably have to wait a week, but it's worth it. Doctors not up to date on how to use cd's will ask for films' You then have to go to the facility and pick up. BUT if you give the facility, that has your films enough notice, they may deliver them to the doctors office for you.
They always attach a paper copy to the film, but over time they can easily get lost, Getting and keeping a copy of these xray papers is important. Avoids fraud when they say they can't locate previous records. It's amazing how many screw ups are covered up by the phrase--"no previous films to compare to".
Story: I found out they were watching my bc site for years when I went back through old records(10 years approximately) . BUT then when it became an issue the mammo's "had disappeared." They denied they had been watching anything. WELL I have sequential copies that states they were watching, but I haven't decided what to do yet.
F. Medication/ Allergy List: carry list in folder that you can hand them at entry of new visit or follow up. It gets old rewriting each time. Get original back before leaving office.
G. Mileage: list from day one, to and from any doc/pharmacy/diagnostic center for tax purposes at end of year. Use a page in the monthly planner. Top of page:destination, miles(determine from mapquest. For taxes run copyof Mapquest, include in tax file. Make file for mapquest copy. I've used the same file for 3 years. Recopy for next years taxes.
H. Receipts: Container to put in all receipts related to out of pocket payments for tax purposes. Copies of all checks written for medical treatments, pharmacy, otc items. Keep separate from household stuff, avoids sorting at end of year.
I. Pharmacy mail order: Use your insurance companies mail order company for drugs.We made a huge money mistake by not using the insurance companies designated pharmacy-HUGE. At the end of the year ask for a computer run of of total spent at each pharmacy for tax purposes. Easier on tax person.
J. Consultation Appointments: When someone says" Trust me we always get the information there-" DO NOT believe. Walk into any consultation with the informatin that the consultant needs to do their consultation. Saves you from a wasted visit and wasted money. Make a packet from your originals consisting of initial History and physical, last set of doctor notes, xray fims/cd's, labs 6months , genetic studies etc. Remember, I said make a packet, do not expect to get originals back. Big centers don't have time to make copies of your originals.
Story: One time after a 2 1/2 hr drive to a big cancer center. They had nothing. This was after the cancer center guaranteed they were sent. I called the day before to the consultation center, the responding person guaranteed that they had them. I faxed a copy of all the same data myself. Think I was safe, no. The big time specialist opened the file and nothing was there, not asingle piece of paper. BUT I knew this would happen. So, I had made a second package as described as above. Did this when I was preparing the fax that I sent, the day before, with a cover sheet, identifying myself as patient and referring doctor and addresses. I handed the doctor every single piece of data he needed. Then after making my own package, I refiled all my master copies in my carrier or ring binder as applicable. Being able to hand that package to the doctor can get things moving fast. Of course, the ideal would have been for them to have prestudied the data, but I think that falls under magical thinking.
Consultation Visits -follow up to make sure they send their findings. With all they have to do, it can take overlong to get their written report. You may not have the time to loose. Add copy to carry file and ring binder
K. Ledger Book: Record debit/cash payout, as a company uses to see where the money is flowing. Can help if you find grant money. Section by month with sequential household and medical expenses. or separate sections for household and medical.--This sounds good, but I couldn't keep up with it.
L. Social Worker Consultation: Visit to see what services and money etc. you are eligible for at the beginning, i.e right after diagnosis or first treatment. If they ask you questions that you are uncomfortable answering, ask if they are required i.e. mutual funds. Don't be afraid to say that you are uncomfortable. The social worker will inform you what is required and what is not required.
Story: We did not have this type of visit until 1yr 1mos after everything started. We were eligible for all kinds of assistance and missed out. i.e American cancer society will assist with pain medication, but will not cover retroactively. The Lymphoma society will assist and will cover some things retroactively if it's in their calendar year. BCO main board has numbers regarding assistance programs.
M. Notice of meeting copay limit: Watch for the statement on your EOB's that says you have met your copays/deductibles. Have facilities scan it into there systems or copy. Get original back before leaving office. Keep in carry file.
Story: We missed mine by 2 months and my husbands by a month. We then had to recollect from each provider. If it was the reverse, they would have been sending us to a collection agency. Have a copy in your carry binder. Ask them to enter it into there system. This may still not work. Thats why you want to carry a copy that says you have met all copays and deductibles in your carry file.
N. Authorizations: When a company is checking on your copay, and you have meet your copay/deductibles. The question, they need to ask is" HAS THIS PATIENT MEET THEIR COPAYS/DEDUCTBLES". VS WHAT IS THE COPAY". This is a good time to pull out your statement that you have met all copays/deductibles. Obtain authorization number from insurance company before having a procedure done. Otherwise you may get stuck with a big bill.
O. Cancer fax file: You will be faxing the same people all the time. Make a file. Obtain someones form that has the HIPPA privacy statement on it. Black out there company name. Write the name of your contact person, write in big numbers their fax number, your name and phone, then below where all the lines are just put the date your sending and re:X i.e. lab update. I've used the same sheet many times. Saves time /paper/frustration of making out knew form each time. Three and half years later I am still using the same file.
P. Review Accuracy of Medical Information: of all physician history and physicals, and notes. One doctor put in a serious WRONG diagnosis and it took six months to get it corrected. Once they screw up, it's in the computer world and will affect all future contacts.
Q. Mental health: PTSD and depression are a problem of dealing with cancer. Consider working with a therapist early on. Please, don't hesitate on this one. This one didn't hit my radar until I realized both of us were seriously depressed.
R. Self Preservation Care: Get prayer networks going, pamper yourself, exersize as allowed, gather as often as allowed with friends and family. During chemo avoidance of contacts in a reduced immune state is necessary. Keeping contact with close ones will dispel the feelings of required isolation that is for your own safety. Read a lot of jokes, tell alot of stories, try to do the things that make you happy. Many inspirational books available
S. Legal Issues: You will probably need a lawyer to review many of these. There are online sites, but risky if you miss something or don't get it right. The key is to set up every thing as to avoid probate. This is practical. You could pass at anytime from BC or falling down a set of stairs. Avoids chaos.
1. Trusts(should also have a will even if you have a Trust, handles unforseen things not covered in the Will), Wills, Durable Power of Attorney(DPOA), Health Care Surrogate Power of Attorney, Living Will are up to date.
2. Names on bank accounts include spouse. May want to include adult child name. This may be important if you can't do bills yourself. Set up as much as possible in online banking. Downside if someones's sued your assests may be attached to a settlement. Better to be handled by DPOA.
3. Beneficiary designation: Check all insurance policies, banking accounts, mutual funds, checking,savings, money market funds, compushare for beneficiaries are designated per instituition policy
a. Transfer on death TOD
b. Pay on death POD
4. Review Deeds to Property and Assets: house, car, boats etc. and rights of inheritence
5. Safety deposit box:determine signators for access. Location of the keys.
6. Have list that identifies all assests, and a second list of what's in the box. Allows POA/Signator/ Executer to know what assets you have and what's in the box.. Essesntially, works as a checklist.
7. Ma111 's thread an excellent resource " A place to talk to death and dying issues" . It's in Stage IV Forum.The information is universal to all. Preparation is for all. This was the lesson learned from 9/11. Many laws in the USA were changed as a result.
T. Immunizations--As soon as you get the diagnosis and BC plan. ASK about immunizations before chemo/rads------FLU, Pnuemovax, Shingles vaccines. These can't be given in a reduced immune state.
The below link is to MA111's Topic: A place to talk death and dying issues. Pg 25-26 have a synopsis written by BON a BCO member. Being prepared should be considered by all, not just when illness strikes.
This link is to atopic thread "TIPS ON SHOPPINGLIST FOR CHEMO" Great and practical info,very little overlap to this thread--definitely worth a read.
All these statements are from experience, that I won't give more details than I have. I'd be here writing forever. Have faith, have hope, cry and rant when you need to, love alot.
Blessings and prayers - sassy
Aug 8, 2019 07:56PM Seamuis wrote:
I found the binder and table of contents extremely helpful and have worked on it since her May 9th, 2019 diagnosis. That said it became unwieldy rather quickly so I started searching for and inexpensive technology solution which was frustrating. While I have a computer, I do not have a good scanner, nor text recognition software. What's the point of scanning if you are unable to electronically enter a word in a search box like 'nausea' and find all the documents that have that word. Perhaps a poor example as that word is ready for retirement. Full disclosure I am a technologist and used to have several PCs in my home, but years ago became tired of supporting my own technology after supporting someone else's all day long so I switched to Apple. I'd had an iPod for years and eventually work gave me an iPhone, well now I have and iPad and my own iPhone along with my iMac. For the solution I arrived at and will detail here you only need either an iPhone or iPad, the later being easier to work on.
After quite a bit of research I settled upon two applications that check an awful lot of boxes and have made life significantly easier for us and I hope should you try to implement what follows, will help you too!
The first app is Scanner Pro by Readdle <Link was here>. With Scanner Pro you may use your iPhone's camera to scan documents. It also allows you to perform text recognition (OCR). The great surprise is Scanner Pro also allows you to send a fax for 99 cents!
The second and last application is called Notability <Link was here>. Notability will run on several operating systems, so even if you do not have a Mac you may run it on a Windows computer. Notability allows you to create notes. A note can be one page or many. Notability may also record audio which maybe saved with your notes. Notes may be organized under Subjects and Subjects my be grouped under dividers. For me one Divider called Breast Cancer was plenty. Under Breast Cancer I created the following subjects in alphabetical order; Baseline & Genetics, Chemotherapy, Claims, Contacts, Disability, Diagnosis, EoB, Logbook, Medications, Medical MY, Nutrition, Port and lastly Prescriptions.
From Scanner Pro I scan a document. At the bottom of the screen the name will default to 'Scan Month, Day, 2019 at Time.' Depending upon what the document is ai may or may not keep the date and time, but I always rename Scan to something that makes sense, like Docetaxel (Taxotere) Chemotherapy - side effects. This document listed out all the side affects of Taxotere. Once renamed I select the three dots in the upper right corner and then select Recognize Text (OCR). Once that is complete I hit Share at the bottom of the screen. Under the Share As pop-up I scroll until I see More Apps and select More Apps. More Apps pops up and I scroll over to Copy to Notability. Notability will launch and bring you to an Import screen. At the bottom of the Import Screen select Create new note. On the bottom right of the next screen you should see one of the subjects you created. Select the Subject to see your full list and then select the Subject you would like to import to. This will take you back to the Import page, then select Import at the top right corner. Your document will display in Notability right away and now is part of your electronic notes and is text searchable.
This whole process takes far less time than it does to read this last paragraph describing it. If this sounds appealing I would encourage you to visit the links above and read a little about the apps and perhaps install them. The costs are pretty low from the Apps store and for us this became an invaluable resource we have wherever we have an iPad Phone or Computer. You may synchronize multiple devices by storing your Notability info in iCloud. To get the information to a PC, you may back up the info to DropBox, then access DropBox on your PC, followed by installing Notability and then performing a File Import.
If you are having any issues with this, bribe your nearest tween for some help>
Great courage, strength and perseverance to all of you and your families!
Apologies, I had to remove the links to post this, have not been around here long enough to be allowed to post links!
Sep 14, 2019 07:16AM kitzelover1 wrote:
I was just diagnosed with encapsulated papillary arcinoma of the breast, with the PET scan stating "a 2 cm solid mass lesion with SUV max bw of 6.7 in the left breast" and the scan also revealing a "2 cm irregular pulmonary nodule with SUV max bw of 6.4" and a "subcentimeter solid lesion with SUV max bw of 4.8 in the superficial lobe of the right parotid gland which may represent benign or malignant parotid tumors."
I met with my pulmonolist yesterday who said not to bother with lung biopsy, just take it out (meaning a portion of my lung). I am meeting with a breast surgeon on Monday and a geneticist/oncologist on Wednesday, and I may make a second appointment with another onocolgist, as well.
I am getting no real direction from any dx and, in fact, my family doctor who has received all the reports hasn't even called me. When the radiolgist who did the breast biopsy called me to tell me I definitely had breast cancer, I sat in my car and just didn't even know what to do -- do I see an oncologist first or a surgeon first. After talking to a couple of people, I still got mixed results so at least I have two things scheduled.
Anyway, one of the things I would like is the binder that you referenced "sent out by the breast cancer society" I've tried to look it up, but haven't found it. How do I get it? I tried to set up a binder based on your outline, but any materials I can get would be helpful.
I guess my breast cancer surgeon can talk about the lung cancer possibility/surgery with me, but any direction in that regard would also be helpful.
I did have a left parotidectomy in 2010 because the tumor biopsy was inconclusive. They turned out to be benign Warthin tumors, so I assume that's what's now happening in the right parotid gland, but that's something else I guess I need to discuss with surgeon.
Oh, and I'm smoking like a chimney but yes, I know I need to stop.
Anyway, that's my story and I'm sticking with it.
Sep 14, 2019 04:20PM moderators wrote:
Welcome, kitzelover1! We're so sorry you find yourself here, but we hope you find this to be a source of support as you begin down this road. It's the club no one wants to join, but you're in good company here! Please keep us posted once you've met with your doctors and have a plan in place, we're all thinking of you!
Sep 16, 2019 05:14PM obsolete wrote:
Hi Kitzelover, so very sorry that you find yourself here. Please take it as slow & easy as you can, even though it's difficult. Relaxing techniques such as breathing techniques, yoga & meditation can help.
Please visit the Papillary Carcinoma page on this website. You can find the thread here: https://community.breastcancer.org/forum/137/topic...
You may wish to contact the breast cancer nurse navigator at your hospital to help guide you thru the protocols and medical choices. Best wishes to you.
Jan 14, 2020 02:13AM WorryThePooh wrote:
milaheta, sorry you find yourself here, but you are in the right place for support. I don't think you need to worry too much about knowing what to ask, as it will be more a case of the surgeon telling you things. Try to take someone with you to take notes, as it's hard to take everything in.
Jun 28, 2021 09:13PM ChrisJack1 wrote:
Thank you so much for this wonderfully informative post! I just joined tonight as I just received my biopsy results and this post was the first I've read. Your post gives me hope that I will find support and info here, and that's what I desperately need, so thank you so very much!