Topic: Just Diagnosed- Get Prepared

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

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

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.

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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.

http://community.breastcancer.org/forum/8/topic/770023?page=1

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.

http://community.breastcancer.org/topic_post?forum_id=69&id=706846&page=1

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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May 5, 2018 09:51PM - edited May 6, 2018 05:19AM by moderators

Hi Maemay,

We are sorry you have had to join us here, but glad you found our community. There are a number of factors that determine if you'll need chemotherapy. One step at a time.

Thinking of you and all the others here Medicating

The Mods

To send a PM to the Mods: community.breastcancer.org/my/...
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May 6, 2018 08:57PM sas-schatzi wrote:

Maemay, They're so many threads. Look at the Just Diagnosed Forum. Wander through them. You may have to lurk to see if it's a topic that fit's your need.

You've had the surgery with a breast surgeon. You should also have a Medical Oncologist. abbreviated MO. The MO is the one that will determine what your treatment should be from here on out. If you don't have a MO, ask for a referral. The breast surgeon should not be figuring it out. Surgeons are cutters. MO do the overall medical management. MO's will determine risk. MO's determine chemo recommendation. Mo's determine whether radiation is appropriate and then would refer you to a Radiation oncologist.(RO). But will still be doing the OVERALL management.

MO's are the center of your treatment for the next few years. Good Luck.

Try when you can to look at this thread from the beginning as time goes by, MANY have offered pearls of wisdom of logistical stuff that helps. Plus, they're links to other threads that help for particular things. But you are in recovery phase for the surgery and are healing. Healing is your focus right now. Blessings, 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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May 16, 2018 03:50PM Hopfull wrote:

May 16, 2018. I feel all types of emotions right now, but feel like I should be stronger at my age emotionally, however we've been hit with a lot this year all within a few weeks.

I'm 71 and received my diagnosis today ILC. It's very small and I'll know more once I speak with the surgeon tomorrow. Everything is happening very fast, which I'm assuming is a good thing, but a bit overwhelming.

My biggest concern is telling my youngest daughter who is 47 and under chemotherapy for breast cancer now; she's on her 4th session out of 5. Afterwards (4 wks) she has to go through radiation. She had a double-mastectomy 2 years ago and now the cancer is back. She & her husband wanted to fight the cancer 100% holistically. No one knows if this is why it came back, but it did. Every minute of everyday, I pray and think of her. She would not accept my not telling her. I live in PA with a great husband and she lives in Colorado, 3 beautiful children and a husband (not much support from him). She's a real fighter and I've been amazed at her strength. I hate not being with her, but I also had surgery 3 weeks ago for a pacemaker.

Just like most of you young, courageous ladies, I did not expect this for myself, let alone my daughter. I was under the myth that breast cancer only hits those that have had Mothers who had BC and if you're older, you don't need to be concerned. On my Dad's side, I had 2 aunts die from BC, but not my Mom who is 98 and always in very good health including now.

I've been healthy and active up until two years ago and I don't look sick. However, the bottom line is that I'm scared for so many reasons. I don't know this Dr, but her reviews are good. I'm afraid of going in for surgery again, I'm afraid of the cancer coming back or being somewhere else. I can't think straight and I keep crying. I came upon this site and felt it might help.

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May 16, 2018 04:09PM edwards750 wrote:

Bless your heart Hopful. So sorry you and your daughter are dealing with this insidious disease. For the record my sister and I both have BC as did our mother. My oncologist said 70% of BCs are not genetically driven. Hard to believe since my sister and I have always been considered high risk. Of course we could be carrying the gene. Neither one of us has been tested.

As for telling your daughter. I would eventually but not sure about now given what she’s going through. Btw my sister’s came back too. She had a MX and was 4 years out. I will be 7 years out this August. I have a mammogram scheduled for next Friday so let the anxiety begin. We know there are no guarantees.

Try and keep the faith. I know it’s hard because it’s hard to comprehend why seemingly healthy people like yourself draw the unlucky card but BC isn’t discriminatory. More and more young women with small children are being DX every day. That’s really sad.

Keep us posted.

Diane


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May 16, 2018 11:31PM - edited May 16, 2018 11:35PM by sas-schatzi

Hopful, sorry that you are here, you're words and sorrows are well known. I suggest going to the STeam Room-------for dealing with suggestions and the anger.It is a great group. I will bring back the link. It is a very specific place to voice anger.

It a;so can be a place to find answers

I will be back with the link Back

https://community.breastcancer.org/forum/102/topic...


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 17, 2018 02:33AM moderators wrote:

Dear Hopfull,

First, we want to welcome you to Breastcancer.org. We're terrible sorry for the circumstances that bring you here, but we're glad you've found and joined this wonderful Community. As you can already see, you'll get tons of support and understanding here, so please stay connected, keep us posted on how you're doing and remember, you are not alone - we are all here for you sending nothing but good thoughts!


Best wishes,

The Mods

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Jun 9, 2018 09:02PM Dmarsh329 wrote:

wonderful, valuable info and I'm glad I seen it on day 2.

Thank you

Dx 6/8/2018, IDC, Left, Grade 2
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Jun 9, 2018 09:12PM sas-schatzi wrote:

Dmarsh---whooohooooo me too. Come back with questions if you have them and I or someone will get you off in the right direction :)

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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Jun 14, 2018 12:37PM sas-schatzi wrote:

Found out abbout a couple three patient assistant programs b/c of my macular stuff.

Gooddays Foundation......... no funding for BC this year, but may have drugs or other condition's that are covered

https://www.mygooddays.org/

Patient advocate Foundation---it's a very extensive web site.

http://patientadvocate.org/

I've posted in the past about Need Med.org. Needy Meds is a great clearinghouse, but I have found it's not easy to use. It takes patience.

https://greatnonprofits.org/org/needymeds

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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Jul 17, 2018 06:52PM - edited Jul 17, 2018 06:54PM by Artista964

"Just 53 days after saying 'I do', Tommy was diagnosed with stage 3 cancer. Determined to help her husband, Jessica created the Better Book to track questions, medications and more. That book is now used by patients across the country."

https://www.google.com/amp/s/www.ktvb.com/amp/article%3fsection=syndication&subsection=heartthreads&headline=wifes-better-book-for-husband-battling-cancer-helps-hundreds&contentId=507-574365308

Dxd at 50. Went thru it all on my own by choice. Dx 6/2/2015, IDC, Left, 6cm+, Stage IIIA, Grade 3, 1/4 nodes, PR+, HER2- Surgery 8/5/2015 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 11/3/2015 AC + T (Taxotere) Radiation Therapy 5/3/2016 Whole breast: Breast, Lymph nodes Hormonal Therapy 6/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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