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Newbie here, but not to cancer

mukamom's picture
Posts: 402
Joined: Oct 2010

My DH was dx with stage iv colon cancer mets to the liver 12/08, two weeks after my father passed away(not from cancer). We were blindsided, to say the least. Colon resection, iliostomy, chemo once a week for 26 weeks. In the middle of that, right lobe liver resection and finished chemo in Oct '09. No evidence of cancer til Jan '10 the day before iliostomy reversal when CT of liver showed suspicious area, right up against the diaphraghm. So more chemo...and tumor board decided that since the tumor was where it was, gamma knife stereostatic radiation was the way to go.(Cyberknife) CT guided biopsy, and marker placement scheduled...but no evidence of tumor..YAY!! Oncologist left it up to DH whether to continue chemo..we opted to continue until next scan, reduced drugs, no avastin. Tumor is back..so off we go for marker placement. Placed markers, and surgeon office scheduled cyberknife tx. ONE MONTH LATER insurance denies coverage because it is not a covered treatment. It took them ONE MONTH to say they did not cover this type of tx in the liver, while we sat around and did nothing waiting. I want to scream so bad..all this wasted time b/c ins drug their feet. We see the surgeon tomorrow to discuss other options, but they seem to be limited. We will crash the the oncologist office too..after the surgeon, to get his input. DH was so excited about the cyberknife(there are good results in killing off tumors) and now he is really depressed, talking about wills, and the end of life...don't know what to say or do for him.

Posts: 3692
Joined: Oct 2009

I want to welcome you to this forum; it is a great group of people. I am really sorry for the situation your husband is in. I can't really help too much because I don't live in the US, so the insurance issues are very different. Someone who can help you will be along soon I am sure. Warm wishes are heading your way.

tootsie1's picture
Posts: 5056
Joined: Feb 2008

Welcome to the board. I'm so sorry about your husband. I hope that something will come along that will give him more hope and better options.


Lori-S's picture
Posts: 1286
Joined: Sep 2010

Welcome to the group. I’m sorry that you are going through this especially after hearing the news that this nasty cancer is back and then having your hopes up for the surgery. I’m sure it feels like being kicked while you’re down. What a roller coaster this cancer ride can be.

I’ve been around the block quite a few times over the years with Insurance companies myself. What was the reason given for the denial? Sometimes if they say they don’t recognize the treatment because they deem it “experimental” you can gather information in regard to others who have had the treatment for the same disease, have your surgeon who is doing the procedure and your oncologist present them with information when you appeal their decision and then it will be approved. I have been through this process and others trying to get coverage before. I always got approval on appeal when I followed the specific insurance company’s appeal process to a T. Each company is different. You might have a health insurance manager with the employer who will walk you through the process. Some oncologist's offices have a person assigned that know's the process and helps or does these sort of things. Don't forget that you have a state insurance commissioner. And if push comes to shove there is the media.

Also, though I don’t have personal experience with her, I’ve heard that Laurie Todd is an excellent advocate. She has dedicated her work to helping with the fight against insurance companies. Here is her website: http://www.theinsurancewarrior.com/

Please let us know how things progress. It will be very insightful and might help others who have to go through the same situation. So sorry that you have to jump through these extra hoops right now. I wish you and your husband all the best.

PS: I also found this: http://www.cyberknife.com/reimbursement-insurance/index.aspx

Lovekitties's picture
Posts: 3355
Joined: Jan 2010

It seems to me that you should be able to go back to the insurance company to have your request re-evaluated. Seems that the doctors you are seeing should be able to write up why there is a need and why it should be this type of treatment.

Also check to see about a patient advocate...someone to help you push the insurance comapany.

Tell hubby not to give up...there is still hope.


Marie who loves kitties

mukamom's picture
Posts: 402
Joined: Oct 2010

What kind words and helpful info from you all. Maybe there is hope for this tx yet. I have renewed energy to push for this. We are headed to the surgeon's office this AM. So glad I have found this site and all the wonderful folks here. Wish it was for a different reason.
Bless you all.


geotina's picture
Posts: 2121
Joined: Oct 2009

Welcome to the board. Insurance issues can drive you crazy. Jennie (idlehunters) just had this procedure and her post last night shows it was very successful. Perhaps she can shed some light on the subject if you send her a pm.

There is an appeals process for denied procedures but I'm not sure the steps to be taken. Lisa42 went through the appeals process to get her insurance to cover something so if you send her a pm she may be able to shed light on how to appeal.

All is not lost so please tell hubby not to give up. Start another discussion on filing an appeal process for a denied procedure those who have had to go this route will see it and respond to you rather quickly.

Take care - Tina

Posts: 44
Joined: Sep 2010

Sorry I can't help you with any of your questions but I wish the best for your husband and hope he can get the treatments he needs.


maglets's picture
Posts: 2596
Joined: Jun 2006

sorry another non=helper here...I too have no experience with US insurance companies but i am so happy you found this board. People here have fought the insurance battles and someone will help.

Do not despair....hang on....sometimes these things just have a way of working out. Waiting waiting is the one of the worst parts of the cancer game so take deep breaths both of you and go see what the surgeons can suggest.

with warm hugs and welcome


lisa42's picture
Posts: 3661
Joined: Jul 2008


Welcome to the board & I am so sorry you have experienced this nightmare with your insurance denying coverage for cyberknife.
I am really surprised they denied it, as most people's insurance seems to cover it. What insurance company are you with?
Instead of accepting it, I would definitely appeal it. It is very possible they will just deny it again. I recently (March) had to fight my insurance after they denied my chemo Gemzar (because it is FDA approved for other cancers, but not colorectal). Even though I had used up all the FDA approved chemos for colon cancer and didn't qualify for any clinical trials I could find and I had letters from three oncologists (my own, and two consulting-one of which was the well known Dr. Lenz from USC)- the insurance still denied it. I appealed it & they denied it again. At that point, I contacted the Dept of Managed Care of California (I assume each state has this dept) and filled out all the forms and sent the documentation of why I needed this chemo, included the drs' letters and a very specific letter from myself. I expected I'd get nowhere, but I got a call a week after I sent the letter from my insurance (who was forwarded all my info from the Dept of Managed Care) & they told me they were informing me they had reversed their decision and were going to cover the drug, as well as reimburse me for what I paid out (I actually paid cash for three treatments). So, it can and does happen- the squeaky wheel gets the grease, as the saying goes. Let me know through a PM (private message on this board) if you would like some specific help in how to go about appealing to your insurance and/or appealing to the dept. of managed care for your state.
Don't give up!!!!

Hugs to you,

KathiM's picture
Posts: 8077
Joined: Aug 2005

Not time yet to give up the fight!!!!!!!

Call the hospital, ask about self-pay options (many times it's much less cost, at a payment schedule).

Call his insurance, and request an appeal (my resection surgery was denied the first time around...I appealed, and threatened, and got it approved...I have no external bag as a result).

Welcome to the board. Tell hubby it's not over till it's over...

There are also excellent advocacy lawyers....call ACS....doctor needs to put in writing that this proceedure is to save his life...

Hugs, Kathi

Posts: 272
Joined: Aug 2010

Just wanted to let you know we will be praying for you and your husband that everything will work out with the insurance and for you both to have strength.
Linda and Ellie

mukamom's picture
Posts: 402
Joined: Oct 2010

Thanks to all again for your input and support...I was able to get a hold of patient relations manager at Accuray(cyberknife) who noticed an innacurate statement in BCBS denial letter. They denied coverage for gamma knife...not sterotatic radiation which is what cyberknife is...idiots. Will be talking to her on Monday so I can have some ammunition when I call BCBS..Surgeon and cyberknife of Birmingham are also appealing, and the onc is adding a letter of appeal along with the surgeons. So there is hope..as there are no other treatment options due to the location of the tumor. Onc decided to start chemo again..5FU with levorcorin, campostar, and avastin on Monday. Poor Robert, he was feeling so much better these days. His spirits are back up again and he says he's not going anywhere without a fight.

Have a blessed weekend


CherylHutch's picture
Posts: 1399
Joined: Apr 2007

Hi Angela... another Canuck checking in so can't help you with the insurance issues (and don't get me started on how furious they make me every time I hear of another one on this board who have been denied or are having problems with their insurance companies... the same companies that are NOT cheap but insist on their expensive monthly premiums for next to no service). Ok, sorry... just had to get that out :)

But, you have found the greatest board on the 'net for support and help with your fight. Because this is not an unusual problem with so many, we have lots of very experienced warriors on this board who do not take insurance companies mistakes or denials lying down. Totally understandable that hubby (or any patient) would be deflated, depressed and so let down when hearing the denial. It gives you that feeling that no one cares and your life is not worth the cost of a potential life saving treatment... which the insurance companies are notorious for letting folk know it's all about money and if your treatment costs more money than money they are making ... they will deny. Dirty pigs. I understand the insurance industry is a money-making business so of course they are watching the bottom line, but it makes me so mad that they are making money on the gamble that most people will pay into it and never get seriously ill... but when someone does get seriously ill, well then that affects the bottom line of making money.

Sooooo, one has to get really clever and realize that the insurance world is all one big game to them. They gamble on the majority of people staying healthy but paying the big monthly premiums. For those who get seriously ill, they gamble on the majority of them will accept that they aren't eligible for expensive treatments/surgeries/drugs... take that denial and off they go to their corner and wilt away until they are no longer needing insurance. BUT, there is that small percentage of very ill people who will say, "Enough of this garbage... I pay/my employer pays, and I expect and WILL get proper service for my years of paying into this insurance game". Those are the people the insurance company don't want to annoy and want to keep them happy so they don't go playing the "serious health card", go to the media and higher up and really make waves about the scam these companies are getting away with. It's in the insurance companies best interests to pay the costly treatments/surgeries/drugs than get the bad press. Unfortunately, it takes a lot of anger and energy to go after them and when we are already fighting the battle of our lives, the last thing we need is to take on an industry... hence, good idea to have a patient advocate or good lawyer.

I wish you and your hubby all the best... and I know you will fight for this and get it. Like I say, there are a fair amount of folk on this here board who have gone through the same thing and can give you lots of advice on what to do and how to go about doing it. Being a Canuck, our insurance system is soooo different, but even still, within the country it is different from province to province. It goes without saying I'm shocked at the insurance system in the US, but I am just as shocked at how with our National Healthcare Insurance system here in Canada, it varies from province to province (since every province maintains their own healthcare insurance system. Insurance is insurance, no matter where you are... and if you aren't getting what you need, you need to fight for it with both fists (and a weapon or two) :D

Please hang out here with us... you will be super surprised at how powerful it is to be with friends who really get it!! :D


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