Topic: Just Diagnosed- Get Prepared

Forum: Just Diagnosed — Discuss next steps, options, and resources.

Posted on: Feb 13, 2010 06:47AM - edited Nov 8, 2017 11:15PM by sas-schatzi

Posted on: Feb 13, 2010 06:47AM - edited Nov 8, 2017 11:15PM by sas-schatzi

sas-schatzi wrote:

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

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Mar 20, 2018 03:05PM 2BoobiesNoMore wrote:

OMG.. that was more overwhelming than my diagnosis.. I must take baby steps

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Mar 20, 2018 03:21PM 2BoobiesNoMore wrote:

So overwhelming. Just diagnosed Feb, 2018. I am 64, and run a business.. i still work 9-10 hours a day, and do not know how i will get thru this. Very lucky, caught on routine screen.. stage 0 ductal (?) Don't know all the new words yet. Double mastectomy scheduled, though.. should cure with no radiation or chemo... i live in a world where no one talks about these things! Like disappearing in the 60"s when a young girl got pregnant. I haven't taken a 2-week vaca for 20 years... how do I say I have to be out for a few weeks?? I am the strong one... not the one who needs help and support..😢

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Mar 20, 2018 04:28PM moderators wrote:

Hi 2BoobiesNoMore, and welcome to,

We're so sorry for the reasons that bring you here, but we're really glad you found us. We know this information can certainly be overwhelming when you're first diagnosed, but we can promise you it will get easier. The more you learn about your diagnosis, the more things will start falling into place, and the better you'll feel about your treatment and recovery.

It sounds as though you were diagnosed with Stage 0 Ductal Carcinoma in Situ (DCIS), does this sound correct? If so, this is a very treatable diagnosis! You can read more about DCIS here on the main site. And, you can chat with others about their experiences with this diagnosis on the DCIS forum. Start a thread there to introduce yourself, and you're sure to get great support!

Also, it's understandable to have concerns about how your job will be affected by your diagnosis and treatment -- the Breast Cancer and Your Job section on the main site has lots of great advice on working during treatment, talking to your boss and co-workers about your diagnosis, and taking time off work for treatment.

We look forward to hearing more from you soon, and supporting you throughout your diagnosis and treatment.

--The Mods

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Mar 21, 2018 12:53PM 2BoobiesNoMore wrote:

Oh my gosh. Thank You! for the links and resources. I appreciate your comments so much.


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Apr 11, 2018 12:46PM - edited Apr 12, 2018 04:36AM by moderators

This Post was deleted by moderators.
Dx 5/2016, DCIS/IDC, Right, 1cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Hormonal Therapy 11/1/2016
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Apr 11, 2018 05:43PM sas-schatzi wrote:

Thanks jp :)

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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Apr 21, 2018 05:27PM Sblackmon47 wrote:

thank you so much

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Apr 21, 2018 09:07PM moderators wrote:

Dear Sblackmon47,

Welcome to the BCO community. We hope that you will share a bit of your story and help our members get to know you. We hope you will find support here. Let us know how we can be of assistance. The Mods

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Apr 22, 2018 09:49PM sas-schatzi wrote:

Hmm no idea why the Mods deleted jp's post. ????

Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride".
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May 5, 2018 08:11PM Maemay wrote:

I just had bilateral mastectomy on April 30, 2017. Cancer found in left breast. Er+ HER2 negative. No lymph node involvement, clear margins. However , cancer was > 5cm. I’m praying for no chemo . Who has insight?

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