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Topic: How do I get over anger regarding insurance and implant

Forum: Breast Reconstruction — Is it right for you? Discuss timing and various procedures and techniques.

Posted on: Mar 4, 2010 08:37AM

blondie45 wrote:

I had a unilateral mastectomy back in April of last year. At the time, I just wanted the diseased side gone and did not worry about reconstruction. Now I am finding almost 1 year later that I am being forced to have an implant if I want any reconstruction. At this point, I am just not sure what I want to do about reconstruction and wanted to explore all of my options. Unfortunately my HMO insurance only offers implants (no TRAM, DIEP, etc) and a referral has been denied to even have a consult with an outside doctor for one of the more advanced procedures. I have had radiation or I probably wouldn't second guess the implants. Also, to add insult to injury I asked my radiation doctor (the guy who told me from the start that he DID NOT recommend implants) for a letter to send along with my appeal. His answer was it won't help so he won't do it. This has about put me over the top with anger. I need to do what I can for the appeal right now and move on and get over the anger. How do I do this?   Also, anyone know how to right a good appeal letter?

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Posts 1 - 22 (22 total)

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Mar 4, 2010 08:46AM 2z54 wrote:

Wow!  I don't know where to begin.  I just know that I would be fighting mad, too!!   I had a PPO vs. HMO and was fortunate to have had a bilateral DIEP. From what I've read of others on this board, who I'm sure will be along shortly, there are laws regarding breast reconstruction. And, I would think that women are entitled to the reconstruction of their choice, which would mean you can and should go outside your HMO.  I don't have any advice about writing an appeal letter, but I would suggest you consult with a medical lawyer to learn more about your rights (just consultation) and/or your congress person.   Then there's always the "google" search:  federal laws breast reconstruction, etc. 

Don't give up without a good fight!  I am very happy with my DIEP and think that it should be available to all women.  Keep us posted on this very interesting question.  Good luck!

Sue

Dx 7/23/2008, IDC, 3cm, Stage II, Grade 3, 0/3 nodes, ER-/PR-, HER2-
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Mar 4, 2010 10:04AM AnneW wrote:

I had an HMO many moons ago with my first cancer. I had to appeal their denial of my second opinion choice. What it involved for me was a concise letter to the appeals board (and that should be on the HMO's website) outlining why this was necessary in my case. You have to make it very factual and non-emotional.

For example, it's a federal law (you can look up the exact law and name it in the letter) that women are allowed reconstruction surgery. List each option available, and thier pros and cons for your particular case. Show them that forcing you into the potentailly wrong surgery could cost them bigger dollars in the long run. (For example, if you are forced to have implants after rads, you conceivably have more surgeries due to capsular contraction or infection, etc. And ultimately need a second recon, involving more stages, more hospital stays, and more $$ from them.)

It may take some time. HMOs really don't want to spend the money, but if they can't offer you the best surgery for you, they pretty much have to. Or else, come time for annual renewal of your insurance, you pay a little more for a PPO till you get done what you want.

Best of luck. I know others have had similar experiences.

Anne

2002 IDC stage 1, grade 1, rads & AI

Dx 9/18/2007, ILC, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Mar 5, 2010 01:48AM, edited Mar 5, 2010 01:50AM by Ina

If you are anything like me, taking action may help you get past your anger over the way your insurance company is acting (GRRRR!).

Insurance companies suck!  It takes stamina to deal with them, but often you can prevail.  The law that Sue mentioned is available on the website of the Center where I had my DIEP done: www.breastcenter.com/support/rights.php. I was fortunate to be able to fight my insurance company with the help of the wonderful financial team at the Center for Restorative Breast Surgery. There may even be a sample appeal letter on their site.

Most HMOs do have a process for offering services that are not offered in their normal benefit profile, and it sounds like you are in the first step of that. Usually they are required to move fairly quickly on these things.  Do you have a primary care physician who will help you with the appeal?  A medical oncologist? What about the office of the other doctor you want to see?  Sometimes a scientific article can help, documenting better outcomes from one surgery over another, and even better, cost savings. The radiation oncologist's response was not helpful, but he probably is not used to dealing with these things--it's not really his area of expertise.He's a scientist who calculates dosages of XRT. 

I can't believe the insurance company will not pay for anything but implants--is there any chance there is some loophole they are hiding from you?

Dx 12/6/2008, DCIS, Stage 0, Grade 3, 0/2 nodes, ER+/PR-
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Mar 5, 2010 02:31AM, edited Mar 5, 2010 02:46AM by sas-schatzi

Blondie, the three post above have given you great advice!!! Try a different radiation onc if available. INA is right it may be out of his area, but it shouldn't be out of your regular onc's area of expertise. Look at the very top of this discussion board page. Where it says "search breastcancer.org site".  WHen it goes to search page plug in "insurance problems". Then plug in 'complications of implants after radiation". Continue with different search terms until you run out of ideas. They have accumulated a wealth of info here that is evidence based, which means it has the sceince to back up what is being written as well as legal rights.

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" SAS

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Mar 5, 2010 04:13AM Chelee wrote:

I've been in HMO's most my life.  HMO's are great as long as you don't get a serious illness like cancer.  HMO's are all about "PROFIT OVER PATIENT!".  Me & my primary doc of 30 yrs have discussed how BAD HMO's are since the day doctors were FORCED into them.  Let me give you his BEST piece of advice when dealing with an HMO.  "BE VERY PRO-ACTIVE!"  And that is an understatement...I can't stress it enough.   

The best person to help you fight your HMO is "ususally" going to be your PCP. (It was in my case.)  Your primary is the "gate keeper".  (that is important to remember when fighting your HMO.)  You need a doctor thats in YOUR corner...ONE that will go the distance with you.  If you have a good primary doc go talk to him/her about this & ask for their help. I've went thur heck and back the last 4 yrs since dx with bc and being stuck in an HMO.  All I got was deny, deny, deny!  But being pro-active as my PCP told me worked every time...it was just time consuming and drained my energy which I did not need.  LIke dealing with breast cancer isn't enough for us.  ARGH  But when I won everything my HMO denied...it was always worth it in the end. 

This is a really SORE issue for me if you can't tell.  But PLEASE...fight this...do NOT let them get away with this!  It's a fact that the HMO knows in MOST cases they just need to "deny" the patient and most will go away and give up.  (So they save money at your expense.)  There are "laws" protecting us women when it comes to reconstruction.  Now I'm not sure if they can force you to have a certain type only...but I would sure look into this...don't take their (HMO's) word for it.   When I was talking about recon and had an HMO...no one told me I could only have implants.  Just don't take NO for an answer.  That's what your HMO is hoping you will do.  Make an appt for your PCP "Gate Keeper" asap.  Tell him what they are telling you.  Find out what the laws are regarding recon..and what procedures we are entitled too.  In fact call the ACS and they can probably tell you what you need to know...or at least direct you to someone with the answers.  Call your HMO and advise them what your being told and you want something in writing where it states your only allowed "implants".  Any time you call the HMO get names of all ppl you talk too...day, dates and times.  Keep records.  File grievances if need be.  (But in most cases...if you have a GOOD gate keeper...he/she should be able to get the answers you need.)  Sorry I rambled...but these HMO's just piss me off to the max!!!  I don't blame you for being angry...I'm sitting here angry for you!  If you don't have a PCP to fight for you...call the HMO as I mentioned before and write an appeal...and follow any steps they tell you too.  I am so sorry you have to even deal with this.  Don't let them get away with this.  Good luck...go get them...after all you've been through you deserve whatever bc procedure you want. 

Chelee

Dx 12-05, Stage IIIA, Her2/Neu, 3+++, Er & Pr pos, 5 of 16 pos nodes.

Dx 12/20/2005, IDC, 3cm, Stage IV, Grade 3, 5/16 nodes, mets, ER+/PR+, HER2+
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Mar 5, 2010 05:15AM LizR wrote:

Hi Blonde!  You have some great advice here - sounds like many of us have had a tough time with our insurance companies.  I have PPO but also was denied a consult out of network (mastectomy with radiation - wanted a SGAP consult).  I can email you a copy of my appeals letter (consult and surgery APPROVED!)  if you send me a PM.  Just as Anne said, be very factual.  I also suggest that you go back to your radiation doctor who discouraged implants and see if you can get a copy of the office notes when he might have given you that advice (I did the same with a PS I saw 3 years ago - and sure enough, he kept great notes and it specifically said no TRAM, no implants - investigate GAP).   It would be very helpful if you could find a doctor in network who would be willing to document that implants after radiation=BAD; DIEP/GAP=good.  Good luck!  LizR

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Mar 5, 2010 05:47AM lvtwoqlt wrote:

Blonde, I had just the opposite problem with my PPO. I went to my ps and we discussed recon with implants because I was not having rads, didn't want to travel to do the tissue transplant surgery, and due to back problems not a candidate for tram flap. My insurance said that I had to have the 'tram' flap surgery and wouldn't pay the PS bill for my first surgery to put in the expanders. My PS office worked with me and we wrote several appeal letters to my insurance company. Finally 6 months after my original surgery, the insurance company relented and paid the PS bill. In cases like this you need to appeal, appeal, appeal and do get a doctor in your corner to help you with the appeal process.

Sheila

Women are like tea bags, we don't know how strong we are until we were thrown into hot water. Eleanore Roosevelt Diagnosed ADH Feb 2005, ADH Sept 2006

Dx 4/27/2007, DCIS, Stage 0, Grade 1, 0/7 nodesSurgery 02/12/2005 Lumpectomy (Left)Surgery 09/10/2006 Lumpectomy (Right)Hormonal Therapy 10/12/2006 TamoxifenSurgery 06/01/2007 Mastectomy (Both)
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Mar 5, 2010 08:09AM pbebow wrote:

Just wanted to throw my 2 cents in... my very first thought when I read your post was to contact the ACS.  I am sure that they have advocates that will help you fight and help you sort through all of the red tape.  I agree with everyone else, but I think throwing in the ACS will help too.  And that rad onc should slapped, why the heck wouldn't he give you a letter, like it would take so much out of him!  Jerk!  Anyway, yes, fight fight fight!  We have fought to save our lives, we shouldn't have to fight for our insurance companies to pay for it, but sadly, if that is what you have to do, do it! With everything you have.  Whoever said they want you to give up is right, that is what they expect and they are hoping for, you give up and they don't have to pay.  Good luck!!!

Paula

Paula, Exchange date April 16th!!!! Yippee Squishy!!!

Dx 11/18/2009, DCIS, <1cm, Grade 2, 0/3 nodes, ER+/PR+
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Mar 5, 2010 02:03PM Deirdre1 wrote:

Hi - Insurance + medical = anger.. that's their job, to make you so angry you won't want to pursue it any more..  Here's my opinion and you can take it or leave it but it has been beneficial with my insurance company when they have denied me coverages of any type but most especially with the breast cancer specialists. 

1.  Set up that appointment with the specialist that you have already asked for (but were denied by the insurance company) and go to him.  Pay out of pocket - I know everyone is tight on money right now, but it will help you formulate your case.  He/she (ps) might actually have the entire answer so it may stop here.

2.  Submit your payment (get a full copy from the consultant posted as paid in full by patient) submit it to your insurance company and expect to have to challenge them in writing when they deny it the first time - it's the only way you will get your information and possibly get your payment too.

3.  If you want to have the tissue reconstruction draw up a letter quoting the law that allows you to have "breast reconstruction" it a federal law - make sure it is clear and too the point of what you are trying to accomplish.

4. (and this is the one that will get you the most results)  Do a CC: at the bottom of your letter to your local congressman or senator and mail out a copy to that individual.  This got my insurance company paying me back in a hurry..

There are two way to get rid of the anger that goes along with insurance companies.. either decide not to pursue it and start mediation classesLaughing or fight for your rights!  Fighting is in fact the more difficult route, however you might make things easier for youself and potentially other's won't have the same problems you had after you are done.  I know when I took this approach with my insurance company they actually changed their approach on who will be allowed to get BRCA testing in the future.. I know that won't happen with every issue - but YOU are worth the try!

Good luck!  Deirdre

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Mar 5, 2010 02:51PM, edited Mar 5, 2010 02:52PM by friscosmom

Are you on a group health plan thorugh your employer? If so, if it's a larger company there may be a representative in the health and welfare department of your company that may be able to provide some guidance.

I wish you the best, I may be facing bilateral mastectomy and can only imagine your anger at this situation. I have doing a lot of research for reconstruction options and found a great resource at breastrestoration.org

Their section on implants says the following, don't know if this would be of benefit when formulating your appeal but it might help, the bolding was done by me.

http://www.breastrestoration.org/implant.php

"The simplest option for reconstruction is to have implants alone. This option is best for patients who have medical issues that prevent them from having a more complex surgery as well as patients who understand the limitation of this type of reconstruction but want to have a breast mound. This option is usually completed in two phases. The first surgery consists of placing a tissue expander in the breast area underneath the skin and chest muscle. The tissue expander, which can be expanded like a balloon, will be gradually filled by adding a salt-water solution approximately once every two weeks. Once your skin has stretched, in about three to four months, the next surgery will replace the tissue expander with a permanent saline or silicone implant. If you do not need the tissue expander, your surgery will only consist of inserting the implant. Although implant reconstruction is the simplest, it carries the highest incidence of complications

An implant reconstruction is not the same as a cosmetic breast augmentation procedure. In cosmetic breast augmentation, the breast implant is placed underneath normal breast tissue, which cushions the implant and therefore allows the breast to have a natural shape and feel.

After mastectomy, the breast skin is thin and due to the lack of breast tissue, the implant is readily felt. The implant is placed under the pectoralis muscle to improve the feel of the implant as well as to minimize infection and problems with scarring around the implant. The lower part of the implant will not be covered by muscle. Often, a collagen sheet is used to cover the lower part of the implant to improve the cushioning of tissue over this area. However, implants may become infected or the tissue around the implant may become scarred and firm in the future, and this needs to be taken into account when considering this option."

Dx 11/5/2009, IDC, 1cm, Stage IIa, Grade 2, 1/12 nodes, ER+/PR+, HER2-
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Mar 5, 2010 03:05PM TOB wrote:

This is outrageous and morally offensive.  You should have the right to decide what reconstruction option is best for you and your medical situation.  It is your right. 

Contact your state's Insurance Commissioner or whatever that position is called in your state and file a complaint.  Here in the State of Washington, our past several Insurance Commissioners have been very pro-patient and helped several of my former clients get insurance denials reversed. Hopefully that is the case in your state. 

We also have very consumer oriented reporters on several of our local TV channels in Seattle.  They have gone head to head with insurance companies on behalf of viewers and have gotten good results in many cases.  You may end up on the local news, but if it helps you and helps other women in your area in the same situation, then it is a good thing. 

Both of our Senators are women, very pro health reform and very pro patient.  I don't know how your federal and state legislators stand, but contacting any of them who are not in the pocket of the insurance companies may also be beneficial.  In 20 years of dealing with injured people struggling against insurance companies, I found that the squeakiest wheels usually got the most grease - eventually.  You may have to fight for a while, but make enough noise and you may get what you want.  Insurance companies do not like negative press.  It is bad for the bottom line and that is all they really care about no matter what they claim to the contrary. 

11/19/09 unilateral MX/SNB/immediate DIEP

Dx 6/4/2009, DCIS, 6cm+, Stage 0, Grade 3, 0/2 nodes, ER+/PR+
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Mar 5, 2010 04:28PM blondie45 wrote:

Wow what a wealth of information everyone of you has given me. If there are any more ideas or anything please keep it coming. I have printed all of your suggestions off to start my appeal against them. I know that when the doctor from Milwaukee called me after he got the denial letter he said he was literally "p*ssed off" and he felt it was something for the Milwaukee Journal, and I am really thinking of telling him that I am willing to pursue that route and get it in the news. Again, keep the info coming!

Dx 4/14/2009, IDC, 1cm, Stage IIIa, Grade 3, 6/18 nodes, ER+/PR+, HER2+
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Mar 9, 2010 01:57PM blondie45 wrote:

Sent off the appeal yesterday and I used a combination of a lot of your ideas. I will let you know what happens!

Dx 4/14/2009, IDC, 1cm, Stage IIIa, Grade 3, 6/18 nodes, ER+/PR+, HER2+
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Mar 9, 2010 02:17PM friscosmom wrote:

Good luck!

Dx 11/5/2009, IDC, 1cm, Stage IIa, Grade 2, 1/12 nodes, ER+/PR+, HER2-
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Mar 9, 2010 04:52PM blondie45 wrote:

Thank you, I think I will need it.

Dx 4/14/2009, IDC, 1cm, Stage IIIa, Grade 3, 6/18 nodes, ER+/PR+, HER2+
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Mar 9, 2010 07:48PM LizR wrote:

Good luck with your appeal - you sound fired up and ready to fight!  Please keep us posted - we all have our fingers crossed for you!  Liz

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Mar 25, 2010 08:01AM blondie45 wrote:

Appeal date is set in April. Do any of you think it would help to get letters from some of the gals on here that have had radiation and implant(s) that have failed or numerous surgeries over and above those required for an implant or is this something I cannot ask for?

Dx 4/14/2009, IDC, 1cm, Stage IIIa, Grade 3, 6/18 nodes, ER+/PR+, HER2+
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Mar 26, 2010 03:10PM nmi wrote:

I went through the same battle too with my EPO.  DO NOT GIVE UP-THAT'S WHAT THE INSURANCE CO WANTS YOU TO DO. I called my insurance co everyday, filed the appeals, had my PCP call the ins Medical Director. I jumped though every hoop they told me to jump though-got denial and denial. Even though the Diep  was listed as an approved procedure on their website for breast reconstruction. (check your insurance benefits on-line, it might have some supporting documentation for the battle).My husband does work for a large company (it's his coverage I'm covered under) once he started going up the chain for command and making noise, the insurance changed their tune.  It's a shame it has to be this hard at such a difficult time, it makes me so sad for you right now. I wish I could help you more or it was not like this at all. I swear i have post tramatic stress over all this-never felt that way over anything else.  Please take care and know you are not alone.

When I was fight this battle with the insurance co, a friend told me, "you did not want implants before you have breast cancer, why should you have them because you have breast cancer!) So true!!

Dx 9/5/2009, IDC, 1cm, Stage Ib, Grade 1, 0/5 nodes, ER+/PR+, HER2-
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Apr 9, 2010 04:40PM blondie45 wrote:

Okay everyone, I got the denial to my appeal, so of course I am back feeling down. I cannot believe that I cannot have my choice of reconstruction. On the first denial letter they told me I had a choice in-network of having an implant. So in my appeal letter I stated that I know they used to offer TRAM flaps and that now they did not and only offered implants. In my denial appeal letter, they said I do have the option of a TRAM flap in-network. I do not think I want a TRAM even if it really is offered in network. I really think I want the DIEP. Are there still a lot of you having the TRAM?

Dx 4/14/2009, IDC, 1cm, Stage IIIa, Grade 3, 6/18 nodes, ER+/PR+, HER2+
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Apr 9, 2010 06:16PM nmi wrote:

OK, I am so sorry to hear this. Is that really your last step?  I don;t know what your finacial situation is, but it doesn't cost anything to contact the Center for Recontruction in New Orleans. (They are some of, if not the best at diep) and discuss your situation.  See what they will work out with you. www.breastcenter.com  Good Luck, I'll be think of you and praying.

Dx 9/5/2009, IDC, 1cm, Stage Ib, Grade 1, 0/5 nodes, ER+/PR+, HER2-
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Apr 10, 2010 10:09AM gale1525 wrote:

I am sorry to here that you were turn down is there an appeal to an appeal? Or maybe consult a lawyer? Also did you get a complete  summary of plan description and read the details? I asked a doctor in California, how much is would cost,and they told me $20,000 and that was only surgeon fees so you can see why they don't want to pay for it. Also call the State of WI office of the commissioner of insurance to see if they can help, you might try writing a complaint to them and sometimes gets the hmos attention, the phone # is 1 800 236- 8517.

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Apr 10, 2010 01:25PM blondie45 wrote:

lluistro1525 - Thanks for your suggestion regarding the Wisconsin insurance commissioner. I wrote them a letter about a week ago. They wrote back that my insurance company has 20 days to let them know why and how they are not violating my rights, etc. The letter said I would hear back from the insurance commissioner's office in 4 to 6 weeks, so they are my last hope for right now for this year. Fortunately I work for a very big company and we have open enrollment at the end of every year so hopefully it will work out for me to possibly have the DIEP I want and with the doctor I want at the beginning of next year. Denial letter on the appeal pretty much said the matter is done and I cannot appeal any more.

Dx 4/14/2009, IDC, 1cm, Stage IIIa, Grade 3, 6/18 nodes, ER+/PR+, HER2+