Author Topic: Health care costs — struggling for transparency  (Read 1954 times)

Melisande

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Health care costs — struggling for transparency
« on: July 15, 2019, 01:43:13 PM »
I am going to do my best to make a long story short.

First, it looks highly likely that I have some kind of lymphoma. The oncologist I saw two weeks ago was using phrases you really do not want to hear  like “definitely malignant.” When I asked if it could be anything else, he asked if I had ever had tuberculosis or bubonic plague. So I have a textbook presentation, plus the list of differential diagnoses is short and far-fetched. Unfortunately, everything I have read online just seems to confirm his opinion.

So, my thinking was just that I would have the biopsy done locally, then send the slides to a national cancer center for a second opinion before starting treatment. Unfortunately, I learned today that my supposedly really good health insurance does not cover second opinions at all. So, now I am thinking of simply starting at the cancer center (which is about 2 hours away from where we live) so I will have an expert opinion right off the bat.

Here is where it gets pretty complicated. Apparently, even if I go to the cancer center before I am diagnosed, this first consultation will still be billed as a second opinion (they bill every first visit as a second opinion no matter what), so I will have to pay for this first consultation out of pocket, although I will not need to pay for the expert reading of the biopsy slides. (If I had the biopsy locally and wanted an expert to interpret the slides, I would have to pay out of pocket not just for the interpretation, but also for the consultation just mentioned).

I am actually fine with paying between $500 and $1500 for the first visit at the cancer center (what the billing department quoted me). But I am concerned that there will be a bunch of extras that somehow find their way onto that bill. So I asked about that. I asked, so if I pay between $500 and $1500 for the visit, will this be it? Or are there ancillary charges? Might other things be added to the bill? And the billing department said: “Well, there is a fee for ordering your medical records and a fee for facility use and the doctors charge their own fee, plus the doctor might order other tests.” As of now I can’t seem to get any information on these other fees. They kept telling me they couldn’t tell me because I wasn’t a patient yet. I also called my insurance company back to ask if the tests my doctor orders at that first visit would be billed as part of the second opinion of whether they would indeed be covered by insurance (as everything after the second opinion is supposed to be). But I did not get a satisfactory answer from them.

I would just throw in the towel and go with the local oncologist I am already seeing, but I am feeling more and more uncomfortable with him and his office. I won’t go into everything here, but one issue is that it is part of a cancer treatment chain that is currently involved in a whistle-blower lawsuit for monopolistic practices, Medicare fraud, and unsafe medical practices. Also, I only googled them because I was already feeling uncomfortable about certain things.

I suppose I could just go with the cancer center, tell myself that all these first time charges probably won’t end up being more than we can afford, but really I would like as much transparency as possible ahead of time. For one thing, I would find it a lot less stressful not having to worry about “mystery bill.”

MsPeacock

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Re: Health care costs — struggling for transparency
« Reply #1 on: July 15, 2019, 01:55:53 PM »
Ask for the billing codes/procedure codes and call your insurance and ask about those specific codes.

It is a giant boondoggle, IMO, getting straight answers from either the hospital/doctors office/ and insurance.

Is your current doctor and the treatment center your only options?

Melisande

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Re: Health care costs — struggling for transparency
« Reply #2 on: July 15, 2019, 02:11:53 PM »
Thanks, MsPeacock. They are the only reasonable options at this point. Unfortunately, the oncology chain I mentioned is really the only thing going locally (like I said, they are being sued for monopolistic business practices). Plus the cancer center in question is really good and only a 2 hour drive from here. I could go even farther for a less good cancer center or I could deploy the nuclear option and go to, say, Sloan Kettering in NY but that would be really impracticable and expensive. Besides, who’s to say that these other places will be anymore transparent. I do have some time on my hands, so I might ask around though.

hops

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Re: Health care costs — struggling for transparency
« Reply #3 on: July 15, 2019, 02:16:14 PM »
Sorry you're in this situation. You'll most likely not be given any definitive answers about billing. At least that's been my experience. Even when you think you know what codes to ask for, you never know what else might appear.

The reservations you express about the local oncologist would be enough for me to say "Well, this is what we save for" and gladly pay for care I'm actually comfortable with, but that's just one opinion. I'm willing to put up with a certain amount of headache for lower priority health issues, but for the big stuff it's priceless to feel confident you're getting the best treatment from the best provider and not wasting your time.

Melisande

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Re: Health care costs — struggling for transparency
« Reply #4 on: July 15, 2019, 03:04:40 PM »
Thanks!

I just spoke with a friend who is a fairly well-known public health expert. She gave me some great advice over the phone. She said I should just stick with the local oncologist up through the biopsy, then go to the cancer center or some true specialist for a second opinion before I start treatment.
She also recommended that I get the ball rolling with the cancer center ASAP (as I have done) because it can take a while to get on their schedule.

I totally get why some people or even most people would put up with lack of transparency if they knew they were getting the best health care. I suppose this does not include me. It is not OK with me. There is absolutely no reason why they couldn’t be transparent. This would never fly in literally any other financial transaction in any other context. In all other cases, you just don’t hand people a signed blank check (or the equivalent). The only reason they get away with it is they know they can essentially hold people hostage with their health in the balance. Even worse if it’s a matter of their loved one’s health care.

I am not saying I won’t use their services. I am saying that I will do my darnedest to get either exact costs or an estimate up front and if they say they can’t, I will get them to say exactly why they believe they cannot, then work from there. All with perfect politeness of course.

You say: “even when you know what to ask for you never know what else might appear.” In a non-emergency situation, couldn’t you ask them up front for what each procedure entails. If they say, well you never know what extra thing might crop up, well, it’s not like there’s no limit to the random things they can bill you for. There is. It’s not like you go for a CT scan and you wind up paying for hoola hoop dancers.
« Last Edit: July 15, 2019, 03:08:34 PM by Melisande »

hops

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Re: Health care costs — struggling for transparency
« Reply #5 on: July 15, 2019, 04:47:30 PM »
I agree, the lack of transparency is maddening, and I hope you keep this thread updated with your experiences in navigating the system.

The worst financial anxiety I've felt as an adult has been while waiting for medical bills to arrive. Half the stuff I have done can't be easily priced because there are too many variables (the procedure might just be a starting point, and then who knows what surprises await once it's underway). But the runaround you can get over something like a CT scan is especially stupid. And my insurer's online estimating tool is pretty inaccurate.

ETA: Our solution's to buy the best insurance we can and to assume we'll meet our deductibles and the OOP max. We always meet the former. If we don't meet the latter, great. And our conditions are relatively inexpensive in the grand scheme of things.
« Last Edit: July 15, 2019, 05:27:02 PM by hops »

LilyFleur

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Re: Health care costs — struggling for transparency
« Reply #6 on: July 15, 2019, 05:08:54 PM »
A cancer diagnosis is an art, not a science. Cancer is complicated and complex.

Many years ago, my dermatologist thought I had lymphoma (a local pathologist read the slide). I went to a very good local oncologist. He sent my slides to the closest teaching hospital, and then presented my case to the hospital tumor board. After a very long wait, and more tests (including a spinal tap), my oncologist informed me that it was a benign condition and gave me some sort of a means-nothing, catch-all benign-condition diagnosis.

It's not cut and dried. So no one can really tell you ahead of time what tests you might need and how much they might cost.

It's your life. Only you can put a price tag on it.

The financial and emotional stresses are huge. I feel for you.

(By the way, many years later, I was diagnosed with a different type of cancer. I reached my max out-of-pocket on my insurance the year I had treatment. My insurance did cover a second opinion.) Cancer is expensive.
« Last Edit: July 15, 2019, 05:21:49 PM by LilyFleur »

Melisande

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Re: Health care costs — struggling for transparency
« Reply #7 on: July 15, 2019, 07:11:31 PM »
Thanks for the commiseration and stories.

Another thing that gets me is the opacity of our health care benefits (Aetna). On the site where they list the benefits, the only things they list are what is covered and they make it look like just about everything is covered 100%, except for copays for office visits. In fact they have a section which explains exactly this — office visits are covered, except for the co-pay part. Now, guess what? Second opinions are actually office visits, but apparently they are the kind of office visit that is not covered. Seriously, they do not mention this anywhere I can see on the benefit information offered to the policy holder. I actually asked for the fine print today and I was referred to a very long list of covered procedures and billing codes. I suppose if I understood the health system I would realize that the code for second opinions is not included. But even in this list, I see nothing at all explicit about second opinions not being covered.

We had a choice of insurance policies. Do I have grounds for complaint here? Doesn’t this seem deceptive to you?

Sigh. Probably nothing I can do except wait to the next open enrollment period. But how to shop around if it’s hard to know exactly what is offered?

I really really hope this is nothing, but in addition to what I mentioned in the first paragraph in the OP — textbook presentation, short list of far-fetched differential diagnoses, I also took medication long term which greatly raised my risk for lymphoma. So, my personal risk is about 500% more than the average person’s risk. Instead of a 1 in 50 lifetime risk, I have a 1 in 10 risk. At this point, if the biopsy comes back negative, I would actually be more worried about a false negative (possible with needle biopsies) than overjoyed.

I am feeling angry, but also guilty. I don’t want my husband to have to spend his hard-earned money supporting me and I don’t want him to feel guilted into it either.

KentBent

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Re: Health care costs — struggling for transparency
« Reply #8 on: July 16, 2019, 03:15:15 AM »
Sorry to hear about your situation. Hope your biopsy results will be good and there will not be the need to undergo all that nightmare.

Unfortunately, our healthcare system works in such a way that the second opinion sometimes costs us too much, but I agree with @hops that it is a serious issue and it is better to get several opinions, moreover if you are not confident with your local oncologist.

As for prices and transparency, I believe that you are on the right way since you've already followed some strategies to minimize your medical expenses. I agree that before doing any procedure or getting any treatment, it is very important to understand what can be done free of charge at the local center and what you will have to pay for. You should always inquire about the prices with the doctor and know what expenses to expect. Moreover, you can always negotiate the prices and ask for discounts.

It is great that you have consulted your friend who is a health expert. Medical advocates or people who are involved in this field can provide you with useful information that you won't be able to discover on your own.

Abe

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Re: Health care costs — struggling for transparency
« Reply #9 on: July 16, 2019, 04:51:42 AM »
Sorry that you’re in thus situation. I’d recommend skipping the seedy local oncologist and going to the cancer center. There will be some up front cost, but other tests (such as a scan or additional lab tests) you will know about before they are done so can ask specifically about your expenses for each. Right now there are too many unknowns about your case that a billing person is not qualified to advise on. They can give you better answers when they know what tests will be ordered. Also, very expensive tests like a PET scan require prior authorization from the insurance company so you’ll know the cost, if any, beforehand.

hops

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Re: Health care costs — struggling for transparency
« Reply #10 on: July 16, 2019, 06:19:09 AM »
I am feeling angry, but also guilty. I don’t want my husband to have to spend his hard-earned money supporting me and I don’t want him to feel guilted into it either.

It's perfectly understandable to focus on something like spending, which we can normally control, when you're potentially facing something much bigger and scarier that's completely outside of your control. But spouses are there to support us (unless they're jerks) and money is there to be spent on what matters to us most. What matters more to the two of you than your life?

As @LilyFleur points out, cancer is expensive. Trying to optimize spending before you even have a formal diagnosis is commendable but mostly a distraction. Deductibles and out-of-pocket maximums will be met regardless (unless, possibly, the center is able to quickly rule out cancer, which you believe is highly unlikely), so go with the providers you trust the most.

Melisande

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Re: Health care costs — struggling for transparency
« Reply #11 on: July 16, 2019, 07:37:07 AM »
Sorry that you’re in thus situation. I’d recommend skipping the seedy local oncologist and going to the cancer center. There will be some up front cost, but other tests (such as a scan or additional lab tests) you will know about before they are done so can ask specifically about your expenses for each. Right now there are too many unknowns about your case that a billing person is not qualified to advise on. They can give you better answers when they know what tests will be ordered. Also, very expensive tests like a PET scan require prior authorization from the insurance company so you’ll know the cost, if any, beforehand.

I am parallel processing at this point. I am continuing with the local people while I try to get in with the cancer center. My health expert friend told me it can sometimes take a very long time to an appointment with the cancer center, particularly if I do not even have a diagnosis yet.

So, I just need to exercise patience for the moment. Today, I finally got the ball rolling (via the local oncologist’s office)  for an eventual biopsy with a local ENT (who does have good ratings and seems quite legit). My pre-biopsy consultation with this ENT is in two weeks. It was the earliest available.

But, like I said, who knows how long it will take at the cancer center. Apparently, they need 5 to 7 business days just to “verify my insurance,” before we can even talk about setting up an appointment. I asked them: “Well, if I have to pay out of pocket for the consultation and we know my insurance is going to reimburse 0%, why do you care about my insurance?” But they do.

Is there anyone here who understands the ins and outs of medical billing? I am baffled.

fuzzy math

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Re: Health care costs — struggling for transparency
« Reply #12 on: July 16, 2019, 08:26:10 AM »
Best of luck to you in getting a prompt diagnosis and not too much run around at either place.

I think its best to continue with both until your situation becomes more clear. The biggest cost savings at this point could potentially come from getting the bulk of your treatments done in 2019 (if its medically advisable) and not having to start over with a new deductible in 2020.

Melisande

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Re: Health care costs — struggling for transparency
« Reply #13 on: July 16, 2019, 08:51:42 AM »
Best of luck to you in getting a prompt diagnosis and not too much run around at either place.

I think its best to continue with both until your situation becomes more clear. The biggest cost savings at this point could potentially come from getting the bulk of your treatments done in 2019 (if its medically advisable) and not having to start over with a new deductible in 2020.

Actually, I am happy to say that we don’t have a deductible. Not very mustachian I know, but that’s what Mr. Melisande feels comfortable with. So now you will all think I am spoiled. Lol.

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Re: Health care costs — struggling for transparency
« Reply #14 on: July 16, 2019, 09:57:21 AM »
A couple of thoughts: my dad has been going to MD Anderson for years for treatment of his cancer and has had an incredible experience compared to his local oncologist.

My uncle was diagnosed with brain cancer in the last 2 months. The specialists in his small town hospital asked him if he wanted a biopsy — as in, “do you even want to go through the pain of biopsy because of how bad brain cancer is” kind of inference.

At my dad’s suggestion, my uncle went to MD Anderson as well. Turns out he has an incredibly rare type of brain cancer that is 100% treatable and 50% curable. Can you imagine if he took his cue from the first specialists?

Go where the experts are for cancer. My family has had a good experience with the billing side there as well — as in, they check your insurance before starting, I believe.

fuzzy math

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Re: Health care costs — struggling for transparency
« Reply #15 on: July 16, 2019, 10:51:24 AM »
Best of luck to you in getting a prompt diagnosis and not too much run around at either place.

I think its best to continue with both until your situation becomes more clear. The biggest cost savings at this point could potentially come from getting the bulk of your treatments done in 2019 (if its medically advisable) and not having to start over with a new deductible in 2020.

Actually, I am happy to say that we don’t have a deductible. Not very mustachian I know, but that’s what Mr. Melisande feels comfortable with. So now you will all think I am spoiled. Lol.

I don't think anyone thinks you're spoiled! Its one less concern in a really concerning time.

LilyFleur

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Re: Health care costs — struggling for transparency
« Reply #16 on: July 16, 2019, 11:00:54 AM »
You are worth it! You can do this! Keep us posted...

Melisande

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Re: Health care costs — struggling for transparency
« Reply #17 on: July 16, 2019, 01:10:43 PM »
Thanks for all the warm thoughts. Maybe I am clutching at straws here, but I think there might be some good news coming. I went to my oncologist's today and sat in the exam room waiting quite some time for him to come in. WTF? I thought. Finally, he came in and said that the CT scans that I had taken last week had not even been read yet. I know that "not read" can mean simply no one looked at them at all. But maybe it means that someone glanced at them and thought they were not high priority. I didn't want to ask. But ... my oncologist just seemed much more relaxed and off-hand than the first time I saw him. When I saw him the first time, he was like: "This is definitely lymphoma!" But today he was saying, well, if the CT scans show malignancy then you will have this kind of biopsy (excisional), but if the nodes appears more benign on the imaging then you will just have a needle biopsy. And he explained to me that the architecture of the node can indeed be seen in the CT scan images. I didn't realize that was possible.

He told me the office will call me either way as soon as they find out, probably sometime tomorrow.

I don't know, the whole atmosphere just felt different. He also had the results of some blood tests he ran --- for a bunch of cancer markers -- and they were all within normal range.

And finally, I read that there is something called "benign lymphoma." I haven't done a whole lot of research into it yet. it seems pretty rare, but at any rate I have a little ray of sun shining in today. Hopefully I will hear some good or at least merely equivocal news soon.

hops

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Re: Health care costs — struggling for transparency
« Reply #18 on: July 16, 2019, 01:30:44 PM »
He told me the office will call me either way as soon as they find out, probably sometime tomorrow.

I don't know, the whole atmosphere just felt different. He also had the results of some blood tests he ran --- for a bunch of cancer markers -- and they were all within normal range.

And finally, I read that there is something called "benign lymphoma." I haven't done a whole lot of research into it yet. it seems pretty rare, but at any rate I have a little ray of sun shining in today. Hopefully I will hear some good or at least merely equivocal news soon.

Thinking good thoughts for you over here! As a side note, I'm not asking for details because it's none of our business, but if the meds you took that increased your risk of lymphoma were for an autoimmune condition, it's possible the odds were not properly explained. Not that it would make any difference in this case, given the scary language your oncologist originally used, but there's a lot of confusion out there about how the math works and it scares the heck out of a lot of patients.

Luz

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Re: Health care costs — struggling for transparency
« Reply #19 on: July 16, 2019, 09:41:52 PM »
It might be helpful to find an online support group (facebook) and an oncology social worker.
 A good social worker can be invaluable for navigating the health care system, especially when it comes to insurance. It's important to find one who's savvy and won't take BS from insurance. Not all of them excel in that area, but one who knows how to throw his/her weight around and make things happen is someone you want on your team.
The insight from members of the online group will be priceless. You need the experience of someone who's been there before so you can make informed choices. They'll be the ones to know what's worth paying extra for and what's not.

Abe

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Re: Health care costs — struggling for transparency
« Reply #20 on: July 16, 2019, 10:01:38 PM »
That’s encouraging news. We can sometimes tell on CT if lymph nodes are more or less concerning for cancer, but definitely would not rely on that alone. Usually that type of reading is in the context of someone with known cancer and we’re trying to figure out how much lymph node spread there is. That being said, lymphoma is a bit more obvious than other types of cancer on CT, with regard to lymph nodes. Either way the biopsy will be helpful to decide next steps and is something to do while waiting to get in at cancer center. Hang in there!

Melisande

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Re: Health care costs — struggling for transparency
« Reply #21 on: July 17, 2019, 09:41:57 AM »
It might be helpful to find an online support group (facebook) and an oncology social worker.
 A good social worker can be invaluable for navigating the health care system, especially when it comes to insurance. It's important to find one who's savvy and won't take BS from insurance. Not all of them excel in that area, but one who knows how to throw his/her weight around and make things happen is someone you want on your team.
The insight from members of the online group will be priceless. You need the experience of someone who's been there before so you can make informed choices. They'll be the ones to know what's worth paying extra for and what's not.

Thanks for the suggestion. I am definitely looking into online lymphoma forums. Usually, you need a diagnosis before you are allowed to post in the main forum or post at all. I don’t do Facebook.

Melisande

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Re: Health care costs — struggling for transparency
« Reply #22 on: July 17, 2019, 09:48:58 AM »
That’s encouraging news. We can sometimes tell on CT if lymph nodes are more or less concerning for cancer, but definitely would not rely on that alone. Usually that type of reading is in the context of someone with known cancer and we’re trying to figure out how much lymph node spread there is. That being said, lymphoma is a bit more obvious than other types of cancer on CT, with regard to lymph nodes. Either way the biopsy will be helpful to decide next steps and is something to do while waiting to get in at cancer center. Hang in there!

You sound like someone in the know. Would you happen to know exactly what it means when someone says that the scan hasn’t been “read” yet? Does that mean no one has even looked at it at all? Or might it mean just that the report hasn’t yet been written up.

So, what I am wondering is whether my scans have been totally ignored or whether they might have been triaged, in which case Yay, maybe? Although, if we were to go this route, it might mean not that the scan was completely normal and uninteresting, in which case the report would be trivial to write, but that it is difficult to interpret in some way, in which case, maybe not Yay!

I had them done on a Thursday, so it’s been almost a week, BTW. Anyway, I am just going back to happy hopeful thoughts.

Melisande

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Re: Health care costs — struggling for transparency
« Reply #23 on: July 18, 2019, 08:57:01 AM »
The results of the CT scan were not good. Several large, abnormal masses. My oncologist has ordered an urgent PET scan so there can get more info ASAP.

I just asked them to make sure they have authorization from my insurance company (or tell me what I will need to pay) before they set up the appointment. They are in the process of having an urgent authorization done.

hops

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Re: Health care costs — struggling for transparency
« Reply #24 on: July 18, 2019, 09:13:42 AM »
I'm so sorry to hear that, Melisande. The authorization should be taken care of very quickly, at least.

Sibley

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Re: Health care costs — struggling for transparency
« Reply #25 on: July 18, 2019, 10:01:02 AM »
If you haven't already done this, call the insurance company and ask for a care coordinator. They may call it something different. They have nurses/other people who's job it is to work with you to help you get proper care at a reasonable cost. When properly run, they can significantly help cut through the red tape (just because they know how to navigate it so it gets done right the first time). They may pick up and shove you that direction eventually, it depends on their processes. But asking for it will speed up the process.

Good luck. I hope everything goes well.

Melisande

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Re: Health care costs — struggling for transparency
« Reply #26 on: July 30, 2019, 08:32:47 PM »
Another update:

Today, I received biopsy results. It turns out that I have something worse than lymphoma: poorly differentiated squamous cell carcinoma with unknown primary. It looks like an aggressive cancer, but they can’t begin to treat or even discuss a treatment plan until they find out where the primary tumor is. The current theory is that it is either a kind of esophageal or lung cancer. But it is merely a theory at this point. I have a PET scan scheduled for next week. Hopefully that will clue the oncologists into the site of the primary.

Current challenge (besides the one big, obvious one):  I am in the process of shifting my care from my local oncologist to the cancer center I discussed in the OP (it is Moffit, BTW). My initial visit, scheduled for next week, is with a lymphoma specialist. Now, I need a different specialist, but am still not sure which one. I would just make my best guess, then shift as needed were it not for the fact that I am paying 100% out of pocket for second opinions. I am fine with paying $3000+ once or twice, but not really multiple times, if I can avoid it. (Want to save some $$$$ for experimental treatments, if necessary).  Obviously I am going to have to do more research on this both with Moffitt and with my insurance co (Aetna).

In the meantime, if there are suggestions...

DirtDiva

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Re: Health care costs — struggling for transparency
« Reply #27 on: July 30, 2019, 09:28:03 PM »
Melisande,
I'm so sorry you are going through this; cancer sucks (I am dealing with a recurrence of cancer).  The lymphoma specialist would most likely be a waste of your time and money -- you might want to cancel that appointment.  I think you will have to wait for the PET results for guidance regarding the best specialist for your diagnosis.  Do you have an appointment with oncologist #1 to discuss the PET results? He/she probably won't want to discuss these results over the phone.

Do you have the patient self-referral phone # for Moffitt?  It wouldn't hurt to call and discuss your situation with the triage nurse; he or she might be very helpful in sorting out the best place to start.

Also, have you asked for a referral for second opinion from your first oncologist?  I have found that oncologists often support and even encourage second opinions, and he/she may be able to guide you to the most respected specialists in your geographic area.  I agree with you that Moffitt is an excellent center and traveling further afield may not be helpful or practical. 

Regarding costs, you are going to meet your out of pocket max.  I wouldn't worry about cost too much.  Do call Aetna and find out what tier Moffitt falls under for your specific policy.   

Feel free to PM me.
 

Melisande

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Re: Health care costs — struggling for transparency
« Reply #28 on: July 31, 2019, 08:01:17 AM »
Actually, I am also having bizarre problems with my current oncologist. Mainly a breakdown in trust and rapport. Apparently, although I am a never smoker, his visit notes were filled with comments to the effect that I was a heavy smoker and was lying about it!! He also wrote that I had received counseling on alcohol abuse. What??? First, I never received counseling on alcohol abuse, from him or anyone else, second, I don’t abuse alcohol. Up until about three years ago, I was a light social drinker (1 glass of wine/week). However the last three years have been completely dry. I included all this information on my patient history form and repeated it when he quizzed me about it during my first visit. At the time, I had no reason to believe he wouldn’t take me at my word (which was the truth), but found out through the medical grapevine (from the nurse at a practice to which I was referred) that instead he had essentially bad mouthed me throughout the report.

I am getting in touch with an ombudsperson at the chain of cancer specialists for which he works. Well, I left a message and am waiting to hear back. In any case, I want to have as little to do with this current oncologist as possible, but he initiated my PET scan authorization request through my insurance, so I need to stay with him at least through that. Or else I have to start from scratch with the PET and may run into real insurance problems with the irregularities.

I was really looking forward to hopping off this crazy oncologist train and catching the express to Moffitt (with my scheduled appointment next week). But now I am in the conundrum I explained in a previous post (I think). Since I need to pay out of pocket, I think I need to make sure I do more or less the right specialist from the get-go or I will wind up paying $3000+ multiple times, while potentially complicating my situation bureaucratically.

My plan for the rest of this morning is to back to the imaging center and get myself an actual copy of the pathology report (I just had part of it read to me on the phone yesterday). Hopefully I will be able to glean a little more detailed information about the results this way. Then armed with that info, I will be calling Moffitt to see if they have some kind of cancer navigator to help.

DirtDiva

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Re: Health care costs — struggling for transparency
« Reply #29 on: July 31, 2019, 02:11:16 PM »
Oh weird. I wouldn’t want to see him again either. He can go fuck himself if he doesn’t believe you.

Cancer navigator at Moffitt is the way to go. It sounds like you’re on the right track.


honeybbq

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Re: Health care costs — struggling for transparency
« Reply #30 on: August 01, 2019, 10:20:09 AM »
Melisande

So sorry to hear of your diagnosis. Moffitt is an NCI designated comprehensive cancer center. Getting into to see anyone there is going to be a vast improvement over your local doc-in-a-box.

Do you have a max annual OOP? (I hope?) I would come to terms that you're going to reach your max annual OOP for pretty much the next few years between doctor visits, imaging, treatment, consults, etc. It's not fun. If you don't have a file/organization system set up for your bills and such- get one now. My spouse is 2 years out from his cancer treatment and we still get bills. It's incredible how slow and confusing it can be.

You can request an entire copy of your medical history from your primary oncologist. If it has a large number of inaccuracies, I would definitely contact the ombudsman or a patient relation specialist to complain about them. Doctors should not be interjecting what they "believe" is the truth. File a complaint. Not that it matter since are moving on but you may be able to help others.

I work in this field - happy to try to help you offline if I can.

honeybbq

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Re: Health care costs — struggling for transparency
« Reply #31 on: August 01, 2019, 10:21:54 AM »
A couple of thoughts: my dad has been going to MD Anderson for years for treatment of his cancer and has had an incredible experience compared to his local oncologist.

My uncle was diagnosed with brain cancer in the last 2 months. The specialists in his small town hospital asked him if he wanted a biopsy — as in, “do you even want to go through the pain of biopsy because of how bad brain cancer is” kind of inference.

At my dad’s suggestion, my uncle went to MD Anderson as well. Turns out he has an incredibly rare type of brain cancer that is 100% treatable and 50% curable. Can you imagine if he took his cue from the first specialists?

Go where the experts are for cancer. My family has had a good experience with the billing side there as well — as in, they check your insurance before starting, I believe.

Not trying to be argumentative or dismissive, but it is standard practice to have pathology before initiating therapy because of the potential for diseases to be benign. I am sure MDA got a biopsy as well. However, they should have discussed pros and cons of the procedure and how it could help guide his decision making.

Abe

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Re: Health care costs — struggling for transparency
« Reply #32 on: August 04, 2019, 11:05:59 PM »
Sorry to hear about the results. I would definitely agree with going to Moffitt. They are not only an major cancer center but also have specific interest in skin malignancies (which based on your history is probably where the current cancer has come from, especially if they couldn't find any primary source on PET). The good news is that there is more effective therapy now than even 5 years ago (immunotherapy). It is generally well tolerated and has durable effect if the tumor is sensitive to it. Feel free to PM me if you have further questions on any of this.
« Last Edit: August 04, 2019, 11:09:31 PM by Abe »

fuzzy math

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Re: Health care costs — struggling for transparency
« Reply #33 on: August 05, 2019, 08:04:05 AM »
I'm so sorry to hear of your bad test results.

This is an off the wall idea, and I have no idea if it will work, but if you get desperate you might try.
Due to your deteriorating relationship with your local office, I wonder if you can back those office visits out of your insurance. I don't know if that would have the cascading effect of making all of your imaging also not paid for, but if you could wrangle it to where only the Dr visits were not covered, you could fight the office and see if they'd write you off.

Another option might be to talk to the insurance dept directly (ask for a claims manager) and explain your situation. See if there is any sort of clause if the therapies needed aren't offered by your local doc. Abe seems to know a lot about what sorts of treatment you might need, and it seems there's a good chance this smaller office might not have them. The old "This will save the company more money in the long run by letting me switch" might appeal to those money grubbing bastards.

A third option would be to see if you could get your current Dr to refer you due to the specifics of your case - he might not want to deal with you any way. You could always go good cop "please help me", or bad cop (be such a pain in the ass that he wants you to leave). Again, no idea how these would play out.

I definitely think there is other worthwhile advice in this thread. Moffit should have a team of intake specialists who can direct you to the correct team. Its ok to ask repeatedly on different calls to different people for the same info (play dumb) to see whether you're getting the best advice on which specialist to see. I do this a lot and am always amazed how many people were willing to steer me in the wrong direction.

Best of luck to you in getting in quickly to the correct person. I hope if nothing else my dumb ideas spark something helpful for you.


MayDay

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Re: Health care costs — struggling for transparency
« Reply #34 on: August 05, 2019, 08:24:01 AM »
Honestly, as a PP said, you will be hitting you OOP Max. I'd just keep the specialist appointment, even if you know it's the wrong specialist- once you are there, they will be able to get you to the right place.

If want the PET scan done there- and once you are see the doc, he or she can probably make it happen quickly.

To me, this is the exact scenario you save for- throw money at this problem because time could be critical.

Beriberi

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Re: Health care costs — struggling for transparency
« Reply #35 on: August 05, 2019, 09:11:14 AM »
This information is probably too late to make any impact on your decision making, but generally a multispecialty practice can only bill one "new patient" visit.  Therefore if you get bounced around a bit at the cancer center, you are not getting new "second opinions" with each new provider.  They are all follow-up visits. You ought to go to the first appointment offered, and let the center direct your follow up.

As stated above, you will hit the OOP max.  There is really no room to navigate this "smartly" from a financial perspective, beyond the very basic - asking for generic meds when possible, etc.

The reason that (usually) medical bills can't be estimated ahead of time is that it is unclear what exactly will be ordered in the visit.  Usually an office visit has a code that depends on new/established, and 5 levels of complexity. You will be a level 5, new patient.  However, the doctor may decide you need certain genetic test, or radiologic procedures, medicines or diagnostic maneuvers. The billing person can't predict that because it takes about 10 years of medical training to be an oncologist and know which things to do - only the treating provider knows that after reviewing your data, interviewing you, and performing a physical exam. You bill will be office visit + facility fee (maybe) + additional diagnostics/therapeutics.   Also, your insurance may cover much more than you think - they may not actually see this as a second opinion depending on the items that are ordered at the visit.  Even if they do, you will get the discounted "insurance price." 

Today is not the day to become an oncologist or a medical biller. It's the day to be an health advocate for yourself and realize you OOP money is gone.