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I have been diagnosed w stage 1 adenocarcinoma. My insurance company won't pay for cyberknife and wants me to have a lobe removed. A big surgery vs easy treatment. I am very scared and can't get my anxiety under control

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LJulie,

With the complexity of insurance these days, I wouldn't have a clue as to why the CyberKnife refusal. Compared to thoracic surgery and hospital recovery (4 to 7 days), CyberKnife seems like a lower cost alternative. 

They both work. I had a complete lung removed and get around just fine. A lobe should not affect your quality of life if it comes to that. Your real worry is did the procedure remove all the cancer and surgery yields a higher probability. 

Anyone have ideas for how to take on insurance companies?

Stay the course. 

Tom

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Julie,

First, what was the reasoning for denying the treatment?  You and your physician have the right to appeal the decision. Your coverage should provide a process for both standard and expedited appeals.  If you can, either post here or message me the name of your insurance company and (this is key) the number in the lower left corner of your policy or certificate.  This is the form number and, once I have that, I can see the approved contract.  Perhaps my 25+ years writing contracts in the health insurance industry may help someone.  

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Hi LJulieMoss,

I'm in Spokane, WA as well. Do you by chance use Tri-Care (military) insurance? 

Meloni 

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LJulieMoss,

First, and I failed to mention in my first post: I am so sorry for your diagnosis. Your fear and anxiety are completely normal, of course. I wish you didn't need to be here, but I'm so glad you found this forum. There are a lot of amazing people on this site, and survivors who have been here since the JURASSIC ERA (I'm looking at you, Tom! ;) ). 

skmcornett is correct, and certainly has the experience to walk you through the process of appealing a denial. Also, I'm reminded that Tri-Care (managed by United Healthcare), offers nurse case management services to people with diagnoses such as ours. If you haven't already explored this option, you may want to check out whether your insurance offers the service. It's beneficial to we the patients because referrals will be streamlined and often approved more quickly. 

Regarding surgery v. Cyber knife: I'm not familiar with cyber knife. Did your providers explain if one procedure would be more beneficial to overall prognosis? My understanding is that surgery is generally 1st treatment, if possible, but technology changes more quickly than I can keep up. :) 

If you're interested, there are many here who can walk you through and just listen to your anxieties and fears of surgery, lung cancer, etc. <3 

IF you explore the surgery route, take a look at Dr. Jon Boyum, if he's on your insurance. His team is at Deaconess, but he has privileges at Sacred Heart as well, and he'll operate at either location. He's amazing. 

I hope to hear from you soon. <3 

 

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I've been thinking about you.  Please keep us posted on your next steps.  

I'm keeping you in my best thoughts.

KatieB

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Katie,

Thanks so much. I am currently on a vacation from doctors. It has really given my some peace and imagined control!

My Mom died in December and the courts are closing everything in a couple weeks. I am busy, on my days off, with that. Then I will do heavy research and fight the insurance company. Having 3 radiation treatments vs having your chest opened and a part of your lung removed, seems like an easy choice. I am an RN and know that in the end, having a lobe removed is not the end of the world and I would have total recovery.

I had a spinal fusion last year and don't have enough time to take 6 weeks off. I have plans to go to Norway in a year so don't want to use all my vacation time.

It is green and sunny outside and there are flowers everywhere. I am learning that stopping to smell the roses, should be a daily if not hourly event!

Julie

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Hi, Julie,

I love that idiom! I think we can all follow your advice and take time every day to appreciate the meaningful things in our lives. Apparently, the benefits have been scientifically proven!

Please post an update when you can. We are here for you!

Lauren
--
Digital Community Manager
LUNGevity Foundation

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continuing to keep you in my thoughts Julie.  Have you moved forward with treatment yet?  

Best hopes,

KatieB

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Hi Katie,

So nice of you!

I am getting a new scan and a new biopsy the end of September. The insurance company won't pay for any treatments until they get a better biopsy. Strange how I need the darn thing to grow so they can get a better biopsy. 

Much less anxious about things and rolling w the punches. Not knowing is still the hardest but it is all steps in the game of life.

Knowing that support is so close by REALLY helps.

When I know more, I will share.

Thanks again so much!

Julie

 

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Hi, Julie,

I just had my upper left lobe removed after a lung nodule my pulmonologist had been following grew and had a "highly suspicious appearance."  Pulmonologist said there was, based on what he was seeing, maybe a 1-2 percent chance that it was non-malignant, and it was suspicious enough he recommended removal regardless of whether it turned out to be cancer.  At the time, the nodule was about 1 cm (it grew a bit more before surgery and was about 1.5 cm when it came out).  Everything I read about cyberknife suggested that it was really only appropriate when the patient can't tolerate surgery (e.g., poor lung function).  I was tested and found to have GREAT lung function, and my surgery (VATS--minimally invasive) was pretty undramatic (though I did have a post surgical air leak that puffed me up pretty bad and put me back in the hospital for a few more days to properly deflate).  I had surgery on July 10, and have recovered virtually completely.  I still try to take it easy stretching the area of the incisions--I started back to yoga bit too soon and paid for that, but after a week off from yoga and going slow and easy, I'm doing great.  I figure in a few more weeks I probably won't even feel the effects of the surgery.

After the pathology was finally worked out, I was staged at 1b NSCLC (adenocarcinoma) (surgeon thinks it SHOULD be 1a, but there was some disagreement about whether the tumor had invaded the pleura).  Anyway, no chemo for now--just on scans every six months to make sure everything stays happy.

I just wanted to reassure you that if you are eligible for the VATS surgery, it really isn't a terribly big deal, and offers the best prospects.  When I asked my surgeon to explain the reasoning behind removing the entire lobe, he said that doing that cuts off (literally) all the blood/lymph vessels that errant cancer cells could use to escape.  That's why it's the preferred mode of treatment when it's early stage.  The traditional "open" surgery is a much bigger deal in terms of recovery time/pain/etc., so I was really relieved I didn't have to go that route.

Keep us posted!

Teri

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