Topic: What Do You Wish You Had Known Sooner?

Forum: Employment, Insurance, and Other Financial Issues — Employment, insurance, and financial concerns are common. Meet others here to discuss and for support.

Posted on: Jan 2, 2011 11:52PM

Posted on: Jan 2, 2011 11:52PM

AlohaGirl wrote:

I'm working with a local legal aid organization on a program to help people with serious illnesses, including cancer, and one of our first projects is to put together some information that will allow people to help themselves.  (I'm a lawyer, but in a totally different practice area, so I don't know a lot about these issues, though I am learning.)  So, I was wondering, what do you wish you had known sooner after your diagnosis?  In terms of insurance, disability, etc. -- not in terms of medical knowledge!  I figure that is what we need to be telling people, not providing a lot of information that may not be very helpful.

I'm really excited about this project and about putting something together that will be a help to people.  I feel so fortunate that my diagnosis was DCIS and that I was able to continue working throughout treatment (though of course I would have preferred not having any form of BC), but I know there are a lot of folks who aren't so fortunate.  

Thanks in advance for your input.  Of course feel free to PM me if you prefer!


Dx 2/18/2009, DCIS, Stage 0, Grade 3, 0/0 nodes
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Jan 3, 2011 12:08AM iodine wrote:

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.

Dotti---BE NOT AFRAID, Pope John Paul
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Jan 3, 2011 12:50AM AlohaGirl wrote:

Thanks so much, Iodine!!!  All good words of wisdom to pass along!

Dx 2/18/2009, DCIS, Stage 0, Grade 3, 0/0 nodes
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Jan 3, 2011 11:13AM - edited Jan 4, 2011 10:04PM by otter

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.


[Edited to remove details and personal information.]

Dx 2008, IDC, Stage IA, Grade 2, 0/3 nodes, ER+/PR-, HER2-
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Jan 3, 2011 11:48AM Kate33 wrote:

I don't know if this applies but I wish that once diagnosed a patient had to be told about ALL the options for treatment (even if some are only available in another city or state) and what was covered by their insurance.  I found out solely by my own internet research that one option was a nipple sparing MX (something my first surgeon never even told me existed) and that my insurance covered it.  I had to travel 2 hours from my home but it was worth it.  Had I not done my own research, though, I would have been more disfigured that was necessary.

Kate33 "Yes, they're fake. (@)(@) The real ones tried to kill me." Dx 12/27/2009, DCIS, 4cm, Stage 0, Grade 3, 0/4 nodes
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Jan 3, 2011 07:49PM AlohaGirl wrote:

Thanks for the suggestions!  I really appreciate them!  How awful about your Dad's power of attorney, Otter!  Terrible when you've done everything right but you still have these problems!  I would never have guessed!  It seems so wrong! (As I mentioned, even though I am a lawyer, I don't practice in this area ... but if you ever want to issue municipal bonds let me know!)  Anyway, good luck to you and your family, Otter, and thanks everyone for your suggestions.   

Dx 2/18/2009, DCIS, Stage 0, Grade 3, 0/0 nodes
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Jan 3, 2011 07:52PM AlohaGirl wrote:

And, Kate, you are so right!  We should be presented with ALL options.  I'm glad you did your own research and figured out the best treatment for you!

Dx 2/18/2009, DCIS, Stage 0, Grade 3, 0/0 nodes
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Jan 4, 2011 03:00AM lauri wrote:

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 !

From the ashes of disaster grow the roses of success Dx 3/8/2006, ILC, Left, 6cm+, Stage IIIB, metastasized to bone, Grade 2, 11/12 nodes, ER+/PR+, HER2- Dx 11/15/2021, ILC, Stage IV, metastasized to bone Hormonal Therapy 11/28/2021 Femara (letrozole) Targeted Therapy 12/2/2021 Ibrance (palbociclib) Radiation Therapy Whole breast: Breast Surgery Mastectomy: Left Chemotherapy AC + T (Taxol) Hormonal Therapy Arimidex (anastrozole)
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Jan 4, 2011 09:22PM Kate33 wrote:

Free Housecleaners?!?  Now THAT I wish I had known about!!!  :)

Kate33 "Yes, they're fake. (@)(@) The real ones tried to kill me." Dx 12/27/2009, DCIS, 4cm, Stage 0, Grade 3, 0/4 nodes
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Jan 5, 2011 12:43AM Estepp wrote:

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!

We are the Ta Ta Sisterhood! Her2+ BC is what I had.... and yes sisters.. I had lymph node involvement...Plus Radiation AND Implant only Reconstruction. DX 6/25/08
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Jan 5, 2011 01:38AM cookiegal wrote:

I wish I had really realized how important it is to be in network when they through mri's and pets and all that at you. BIG BAD mistake!

You deserve a cookie!

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