Insurance is PAINFUL
anyone else have sooo many issues with insurance that it delayed your treatment? How is this the best healthcare systems?! It blows my mind how what my doctor deems is best for me won’t be done because of some jerk at an insurance company. I have United Healthcare and for everything else they have been fine but for my actual treatment they have made ever step to get started dreadfully annoying and stressful for me. I think every week delayed is lie 14% less OS so thats nice of them to gift me with.
trying to breathe through this. What other options do I have to try to pay out of pocket- the doctors at Cleveland clinic don’t even know where I need to call to do this- shows how much that comes up(not that I even have the funds to do that but worth an ask).
Comments
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Yes, I had delays because of insurance, and at least so far I have survived. Eventually, I fought it out and things worked out. You do not mention the type of insurance you have (ACA, Medicare, private) as that can affect the strategies. You should be sure you have a copy of your policy and might want to talk to a lawyer if things do not proceed satisfactorily. It is one more headache you have to face, sorry you are going through this.
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Just sharing our experience: I have insurance through my wife's company. I was diagnosed with Stage III (T-C) rectal cancer. I've been through radiation, chemo, and a plethora of tests along the way. We have had zero delays or issues with insurance. Hope this helps and you get everything straightened out.
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Consider yourself lucky then:) I’m still delayed and awaiting the appeal. But it should only be a matter of days now I hope ❤️
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I lay on a gurney, IV in arm and ready for liver surgery, when my insurance company decided NOT to cover my surgery, after saying that they would. For two hours my Surgeon's assistant fought with them, until the surgeon himself got on the phone. He bandied threats at them - some kind of medical insurance board, in the state of Nevada - and only when threatened, did they say "Oh, OK, go ahead and do her surgery'.
Yes, a nightmare for so many of us. They will take our money fast enough, and then play God when it comes to paying out.
I can't give you any hope. As I said, in my surgery instance, the Surgeon himself got on the phone. I had a PET Scan denied, and my Oncologist team worked through that, so I didn't have to fight them.
It sounds like you have worked through your Oncologist, but try again. Try everything you can.
I'm sorry that my reply is more doom and gloom than being helpful.
Tru
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Oh my! I am so sorry you had that experience. This is not ok, this needs fixed. It’s just plain unacceptable. People’s lives at stake and they just see us as dollar signs. I don’t know how to make it better but it needs to be addressed.
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Ok, still awaiting approval with no set dates for treatment. It’s been since June 6th that I got my diagnosis- over two months already and I’m starting to freak out. If this goes to stage IV my odds are not nearly as good. I’m considering just asking them to start with the surgery.. would that really be so bad? Anyone have rectal surgery and really regret that option? I know the new protocol is to try to avoid but click is ticking here and in at a loss.. ty!
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Do you have an Oncologist? Have you spoken to them about this delay with your insurance company? I can't see why they - as in their office staff - can't help you. Two months is far too long to be waiting.
Have you also spoken directly to your insurance company?
This is your life they are playing with. Call them ever day, if you have too.
Tru
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It’s been a disappointing process for sure. I feel like I’m the one pushing everyone. The nurse was like ‘I know a week feels like a long time but it will be ok’ and I reminded her that it’s been two months since my diagnosis not just a week- this process of doctors appts, second opinions and scans just took for ducking ever! Lol autocorrect on my phone- I like it keeps me from swearing:)
I will keep calling but it does feel like no one really has any urgency here. They did initially until insurance gave them the run around and now they seem complacent:/
I think surgery really should have been our first stop anyways - just ducking get it o it! I’ll take a **** bag, I want to see my kids grow up!
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If I were in your shoes I would see if an attorney or other advocate could be enlisted to deal with the insurance company.
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** Can you tell us a little bit about your diagnosis and recommended treatment(s)?**
Mostly insurance is a ripoff where delay is the deadliest form of denial. Often times there is some element of cost control that they are balking over, that perhaps they can't legally or reputationally say. They maybe having a fit or fight over price - I've had it over my choice of hospitals inside their official network, where the procedure was 60+% cheaper at the lesser known hospital. So they can try to exhaust you into something/someplace cheaper, or miss some window.
I've had experience over my wife. I've had bs for myself, where the "errors" were so bad, after several days, I finally said, that last statement is fraudulent (repeated willful misconstruction with denial/delay of benefits) and if you don't have my authorization in the next 15 minutes, **I am** literally walking out of this hospital, to the prosecutor's office to file a complaint. I meant it, that was a meaningful threat, yes I could do that well enough, and yea or nay, it was going to start rows that would be at least reputationally adverse.
Sometimes, they do have a silent or quiet point that a drs recommendation is not the most favorable treatment as well as being expensive, and that there really may be cheaper, better alternatives.
However, tea leaf reading should not be a requirement and time is of the essence.
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I'm sorry you had awful experiences too. It does no one any good. It's complete crap the way it works. I am glad they finally came around on Tues (8/22/23) to approve it, but why did they have to make me stress and go thru all this and waste valuable time. It was complete horse sh*t, but we finally started treatment yesterday. I am still very angry that they made me delay two weeks for god knows why. It is a broken system and I don't know how but we need to address change.
I have stage 3 rectal cancer and my tumor is in a precarious place near my anal verge. Due to my anatomy, my bowel and bladder are still in the way but the recommended IMRT vs standard XRT was requested. That is more money and machines are not everywhere. So of course they would pay for standard, and many days of it but not what was necessary to spare my digestive sytem originally. I joke it was like having to be denied 3 times by a Rabbi to convert, it just required 3 tries - if only they could have told me that upfront :P
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I have some info here that I hope comes in handy for you. First, I’m not a doctor nor am I qualified to provide any medical advice. Hope this helps…
I was diagnosed in December with Stage III TC rectal cancer. It had penetrated my rectal wall and infected multiple nearby lymph nodes (a very dangerous situation). Any longer, and I could have ended up in stage IV.
My Oncologist explained to me that in the past decade, and more recently in the past 5 years, that rectal cancer treatment has shown to be more effective by first treating the mass with radiation, followed by chemotherapy, followed by surgery.
Coupled with plenty of exercise (weights), a strong/clean diet, extra rest and peacefulness meditation, my radiation and chemotherapy was very effective. In fact, my Oncologist stopped the chemo after the 4th session (I only had to do 4 out of 6 Chemo sessions). I am still expected to do the surgery.
The reason I’m telling you this is because if you can’t get approved for surgery, then perhaps your Oncologist can adjust your treatment plan to put the surgery at the end to buy you more time to get the insurance worked out for surgery.
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Thank you! I actually just got the approval for chemoradiation Tues so first day was yesterday:) I have been nervous about lifting outside of body weight with yoga - but need to add that in! I guess I am more scared to exhaust myself too much.
My surgeon is really pushing still for no surgery and they do a watch and wait if all looks like going the right direction. She did say if I want to do the surgery anyways, she will oblige - she just doesn't recommend it if not needed. Good luck with your surgery! Sounds like you have been doing all the right things, I hope for a speedy and cancer-free recovery :)
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Woo hooo… that’s great news!
Yeah I went full steam ahead trying to build as much muscle as possible to build up strength to last through the chemo treatment. I thought I would have to stop working out after a few radiation treatments, but I was able to keep up a workout routine all the way through 6 weeks of daily radiation treatment Mon-Fri, and then also through the first 2 chemo treatments (another 6 weeks). When I hit my 3rd chemo treatment… that’s when things started getting serious, and I knew at that time that I needed to back off of the workouts and rest my body heavily. By that time, the fatigue and symptoms were just too much to keep going with the workouts.
I used high-quality protein shakes to help augment the muscle growth, but also to protect healthy cells from the radiation and chemo.
The workouts (and corresponding extra rest) took a LOT of focus and dedication… but my life was on the line, so I made everything else second priority.
My diet also took up a lot of time (cooking fresh meals). Make sure to cut out sugar, red meat, alcohol, and processed foods… you know… all the GOOD stuff 🤣 Those are all cancer-causing foods… they create the perfect environment inside your body for cancer to grow, and in retrospect, I can see my diet, alcohol, and stress were what put me in this terrible position. To dig myself out, I switched to a clean plant-based diet (veggies, fruits) along with cancer-friendly meats(chicken, salmon).
I lost a LOT of muscle during chemo… by the time I finished my 4th chemo treatment, I was looking and feeling very weak… so I’m glad I had pushed myself at the beginning… I believe it was a key component to getting through with such a great response to the treatment.
After my treatment was ended early, I rested for a couple weeks to give my body a break, and then ramped up the heavy diet and exercise routine again.
Its been 2 months since then, and I feel GREAT! I’ve rebuilt my muscle back, and I feel back to normal… actually, better than normal.
I am also hoping for a Watch and Wait approach, but I haven’t been scoped yet to get a clear idea of whether the tumor has had a “Complete Response” or a “Near Complete Response” to the chemo radiation. That’s my next step. Unlike you, my docs are pushing for surgery, while I’m pushing/hoping for WW. I may have to do surgery, given how far down my tumor was. It’s a tough decision, and one I am evaluating very carefully.
I hope this recap of my approach helps you and others plan and execute their journeys with conviction and determination, because that’s what it takes to push through this. It’s not easy, but doable! Good luck and Godspeed!!!
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Love this! I may message you to get more details on shakes you recommend. From what I heard the third cycle seems to be magic number for when it gets too much to maintain.
Rooting for you!
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I guess I was one of the lucky ones (regarding insurance anyway). I hear all these horror stories, but I never had a single issue with insurance. My doctors said this is the surgery, or chemo you need, and scheduled it. 3 separate surgeries and two 3 month sessions of chemo. We billed the insurance after and they always paid. We never discussed insurance or payment before scheduling. Even if the insurance wouldn't approve, I would have gone forward anyway. The hospital lets the bills build up, then I set up a payment program for $300 a month. After I hit my out of pocket maximum so the insurance was covering everything 100%, then I applied for financial assistance from the hospital for my portion and they covered it.
On the last posting, agree, chemo session 3 was where the exhaustion kicked in hard and exercise went to barely being able to walk to the bathroom.
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Will lawyer cost quite a bit of money and it will take even longer to solve the insurance issues?
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probably yes but luckily it got approved finally and we were able to avoit more delays:)
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I have UHC insurance and it’s the worst customer service. Hard to get the true information.same question for 3 different people all have 3 different answers. They don’t care about our health. Customer Service reps get little or no training.
My cancer treatment will be delayed because per authorization Is still pending. So said and we are struggling enough all ready. I don’t see any Hope in the near future.
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