What Do You Wish You Had Known Sooner?

I knew but didn't really accept that as a patient, I have choices.  I can accept or refuse any offered advice or treatment options I choose.  I do not have to do or participate in Everything even when I don't understand or agree with what/or manner that things/treatments/pain are being done.  As the patient, I have rights (and responsibilities) to become informed, even if the medical person has to take an extra few minutes to explain something to my understanding.

I have the right to not be in pain: and to accept nothing less than the best medical science can afford me within medical guidelines.  No tech or nurse or doc can proceed with a treatment or procedure when I am in pain if I refuse to let them do so.  I must take responsibility for myself and not allow people to hurt me when I don't belive it is necessary.  I am NOT superwoman and will gain nothing, not even respect of the medical personnel, by being "tough". 

I am responsible for learning the results of any tests or procedures, not the office staff.  If they have not called me with results, I will call and ask until I am given the results.  I will also obtain copies of everything and keep them with me at each appt. 

I  need a medical power of atty and a living will. Period.

This is not something I learned through my BC experience, but it might help you advise your clients anyway.

I wish I had known that a "Durable Power of Attorney" isn't always durable, or even valid. Two different financial institutions challenged the validity of my dad's Durable POA because he had not "reaffirmed" it annually since it was signed and witnessed and filed with his lawyer 6 years earlier.  One representative wanted Dad to write up a new POA specific to their company, rather than use the general one he had made.  The other company objected to the fact that one family member to whom the powers had been granted lived out-of-state; that company refused to recognize the POA until that person officially revoked his/her powers because the company did not do business in that other state.

So, what good is a "durable" POA, if it has to be reaffirmed every few years, or if it's not recognized by some parties?  Even though this does not involve insurance or disability, it's something we all ought to be thinking about.

otter

[Edited to remove details and personal information.]

This is really trivial -- but I wish I had known about the program that sends free housecleaners for cancer patients in active treatment !  Didn't feel like doing anything in 2006 -- and the house has never been the same since !

I wish I had thought about insurance deductibles so much MORE. Maybe chosen an HMO... NOT PPO....

Yes, insurance has to now pay for all our reconstruction.

~ but ~

since I have a yearly catastrophic of 3000.00, I have had to pay that for three years. If I go to finish my recon. with fat grafting in 2011, another 3000.00 will occur. I NEED the fat grafting to feel whole again... but guess what... NOT GONNA HAPPEN! Did I mention I also got stuck paying for my OWN Alloderm ( a lot of us do)... about 2000.00 more that year ( 08 )

~ so ~

I will have spent 14,000.00 out of pocket in 4 yrs.... to first off... get the chemo... surgery.. and rads.... ( all needed and worth it).... BUT... the last two years... the 6000.00 bucks to do reconstruction ( my choice to look and feel more normal for me) is NOT NOT NOT what I expect. They make such a HUGE deal about it.... " they say".. ALL women can get recon. whenever they want in the journey... they can do a prophy.... whatever. It is WELL known that we all can now..... choose to do recon. in our time and in our way.. whenever we choose it.... if we do.

WHAT THEY DO NOT TELL YOU..... is that it is subject to your own INSURANCE deductibles and catastrophic yearly. So..... for me to look like I want... to feel whole again ( for me)... I will need to spend $6000.00 OUT OF POCKET FOR IT......... but by golly..... I can CHOOSE this right?????????????????????????????/

THIS is what pisses me off. It is not right AT ALL. I think deductibles and catastrophic should be WAVED in the case of giving a woman back some form of her breasts... and not just " half way there" because she cannot afford to FINISH !

Vent done.

I am very serious though!

People really need the details on the new health care act and the pitiful coverage offered by state programs - too expensive for the median and lower income groups who don't qualify for medicaid. They need to know that some companies ahve been given an opt out and still impose low yearly caps, like ours at $175,000. So much of the bill was written of and for the lobbyists from big health care industries and not for patients.

I am trying to be proactive regarding insurance.  I just got diagnosed in December and have surgery scheduled for 1/27 (BLMX and reconstruction).  I already printed out my plan coverage from the insurance website.  I also called and asked a ton of questions about what was covered and what the maximum out of pocket fee I would pay for the year.  I also checked to make sure my hospitals and doctors were all in network which they were.  I also read that getting my medications through the mail order would save a significant amount of money annually (which I plan to do).  I do have as much STD and LTD insurance as possible - I have always been proactive in that department so I am set there.  I also called about my STD to find out how that will work since I will need to be off for more than one surgery.  Sometimes they consider both surgeries the same incident if the surgery dates are close enough together and sometimes they are considered separate STD's if the dates are further apart.  I want to understand that so I can strategically schedule my surgeries to my benefit.  I also have put together a binder with all of this information in it and I plan to keep all bills/info in the binder so it will be easy to deal with and review as more information comes in.  I also called my insurance company and have them walk me through their website so I know where I can look up what is covered.  They told me where the link is and all benefits are outlined (criteria is listed for each thing so I know if I meet the criteria or not). 

I am a compulsive planner so I have just done this on my own.  I don't want to deal with insurance BS - I am already dealing with enough cancer BS.  I hope some other women find these tips helpful.  I am sure there are things I have not thought of yet and will learn as I go. 

mdg - We think alike!  I had the binder with a printout of all my doctors' names, phone numbers, fax nunbers; prescriptions; chemo specifications; copies of all test results; EOB's from the insurance company; notes of date and time and summary of each conversation with insurance company, disability people, etc); dates of appointments with mileage, tolls, parking receipts.

I was on the insurance website at least twice a week, so I was on top of anything that was denied ASAP.  Had a friend who didn't even look at all this until she was completely through treatment -- MUCH easier to handle one bill at a time while it's still fresh in your mind. (and the insurance company has deadlines for protesting denials.)

In-network providers -- did you ask the hospital if they use independent anaesthesiologists ?  You can't ask if they're in-network after they've knocked you out -- I got a bill for excess charges (I refused to pay, and they backed down -- BCBS paid their customary rate for hospital, surgeon and there was no problem with that part.)

I was "lucky" in that my onc signed off for me to be on disability from the date of my first surgery through chemo and radiation and two months after radiation ended, so I didn't need to do strategic scheduling.

For anybody else who is not as anal-retentive as I am -- see if a relative or friend is willing to be the bill-tracker and insurance coordinator.  For me, it was fun to do on the days I felt well ...but if you're NOT feeling well, or if it's not fun for you, handing off that job is a great idea.  And it lets somebody feel like they're doing something to help you without them having to look at bandages or drains.

iodine - 

Cancer 101 offers free planners.  I keep everything in my folder from them.  

http://cancer101.org/cancer-planner/