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Feeling a bit down

plsletitrain
Posts: 253
Joined: Jul 2017

I was so determined to beat this beast.  But, as almost always, its not always a smooth ride.

 

Last week, I was due for a CT scan.  My last CT scan was before I had the emergency operation for my colon cancer.  Back then, my onco spotted a spot on my right lung.  We conducted a biopsy and it yielded negative.  Fast forward to last week (after about 4 rounds of chemo), the CT scan showed that the mass on my lung shrunk by half! Now I would take that as a good news at first.  But my onco ruled that since it reacted to the chemo, it is most likely cancer.  He again prescribed Avastin which was double the price of my chemo.  I don't live in the place where we got insurance benefits, I pay everything in cash! And you all know chemo is very pricey.

 

I'm almost halfway done my chemo and I thought I'd be done without any other treatment aside from my Xelox.  My onco said if all goes well with the Avastin, we'll have a lung resection.  Easy for him to say, but my mind was already cloggged up with expected costs, not to mention I don't know what toll will the Avastin bring to my body.  While he was explaining these things, I felt like fainting.  I just felt so down.  

plsletitrain
Posts: 253
Joined: Jul 2017

I'm kinda having doubts on his diagnosis.  First, the mass was already there before the colon mass was removed.  After the operation, the biopsy on my colon mass revealed no mets.  Yeah, I'm trying to persuade myself that he's wrong.  I'm not ready to embark on the Avastin.  

SandiaBuddy's picture
SandiaBuddy
Posts: 1093
Joined: Apr 2017

Rain:  I understand the uncertainty.  And often the physcians do not seem entirely competent.  It is a dilemna.  From my perspective it is entirely up to you to determine what advice to follow and what advice to ignore.  I mean, for me, when they did the surgery they found the tumor in a different place than where they thought it was, despite two CT scans.  How is that possible?  I really do not know.  

As to money, what good is money if you are dead?  I have had to accept a lot of money flowing out during treatment. If I survive, I can earn more money.  If I die, it really does not matter.  I imagine as you sleep on the issue and think about it for a few days the correct path will become clear.  Perhaps you can step back from the issue and breathe a bit.  I have found that exercise is a great help for me to gain clarity.

None of this is easy.  We all realize that.  Rest assured that there are people who understand what you are going through and are here to support you.  Good luck.

 

 

plsletitrain
Posts: 253
Joined: Jul 2017

This is all a whirlwind of emotions.  I'm trying to stay strong, telling myself that the mass is not cancerous.  I will wait for my chemo to end and then have a PET scan and I hope all is clear by then.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I feel so badly for you. It's not something that you can control or anyone can help you get through, it's something you have to wait out, unfortunately. It's like someone saying "don't worry" when you're worried about something. Like you can just shut it off. We've all been through it, we all still go through it, we'll all deal with it again at some point. Sometimes it's unexpected. You're having a good day and it hits you. Other times it keeps you up at night with fear and uncertainty about where it will all lead. But it does go. I find I'll get up in the morning and the anxiety has fled in the night. And then I'm good for a while until something is said or comes up or I read something and it starts up again. Sadly, this is a huge part of the journey, anxiety. How can it not be? We have the scariest thing people face. The big C. But we're all tough and we get through it both physically and mentally. We're amazing people who get to find out just how tough we are. Most people never know that about themselves. Just know that you'll get past this and do what you have to do- which could mean getting a second opinion- and things will get better. I wish there was something to say that would make the fear go away but I've got nothing. Take care and do something for yourself that makes you happy. Know that we're all here for you and we understand like few people can.

Jan 

plsletitrain
Posts: 253
Joined: Jul 2017

Thanks jan.  Well-said.  Especially about the  anxiety part.  I think a very big chunk of the battle is psychological.  Cancer is on the physical but all these things we have to worry about just burdens the mind and heart more.   And its very hard, its hard to stay positive and strong when you've got all these issues to think of. 

darcher's picture
darcher
Posts: 257
Joined: Jun 2017

 That's the question to look into.  Is cancer the only structure where overall dimension is affected by chemo.  I suspect it isn't since chemo operates by interfering with mitosis. I would think any dinstinct cellular structure can be impacted especially when its size is substantially smaller than the surrounding tissue.  On the flip side, as I learned already, not all cancers will give a positive result for a biopsy.  I'm not any kind of expert but I suspect it has to do with the age of the cancer. Younger tumors may have a much higher concentration of captured healthy cells than ones that have aged a while therby giving off a false negative. An option might be to take a short wait and see.  If it is cancer, it will start growing again. It should be size guaged right after chemo and use that as a baseline.  The one important question is how long to wait and see. However, If they say what I mentioned is craploa, take their word for it.  They've got many years of education and training and second guessing their advice might prove fatal.

 The issue of cost is something I'm looking at too.  Granted, I've got insurance but within the first few weeks I've already burned through the entirety of my obligated amount for out of pocket expence.  It took all of a couple visits and procedures to do it.  It wasn't low either.  I took the high deductable plan figuring I'd never need it. I guessed wrong on that one.

 I just got a notice that the endoscopic ultrasound I had done was 13k. That's a big chunk of money. I don't have to pay it. This was done within a month of diagnosis.  I haven't seen anything about the chemo or radiation.  That's going to be a boat load of money the insurance carrier is covering.  If the stats are true, that about 40% of the population is going to be diagnosed with cancer at some point in their life that means the cost of our medical system is unsustainable. 

   I've alsways paid my way and this event is going to eat up every dime and then some I've ever given to the insurance company over the past couple decades.  Based on my simple math, just to stay at break even would mean everyone paying their own insurance times two without any sibsidies. As it is now, most are not able to cover their own without help and those that do are struggling to do that.  Who would have thought 20 years ago that the cost of medical insurance would rival rent?  This is nuts. 

 

plsletitrain
Posts: 253
Joined: Jul 2017

That's one interesting thing that has also bugged me: should chemo only attack cancer cells? I thought it attacks any type of cell as it doesn't recognize which one is cancer and which one is healthy.  That's another theory that my onco-is-wrong side tells me.  It shrunk because chemo just killed it, so it could either be healthy or cancerous.  Another thing is when they biopsied my colon mass, it revealed that it had not metastasized to any other organ.  Plus the negative biopsy.  All these facts made me hold back on the Avastin.  And if knock on wood the mass on my lung is really cancerous, I hope and pray that the Xelox cocktail I  have will vanish it completely.  That's the only hope I have.  I'll also be waiting for the PET scan after I'm done with my chemo which is around October to see what's about my lung mass.

Speaking of insurance, I never got one.  I never thought I'd have this dreaded disease.  And now I can't get it, no insurance company would ever approve of a cancer patient.  Talk about emotional roller coaster.

SandiaBuddy's picture
SandiaBuddy
Posts: 1093
Joined: Apr 2017

If you are in the US you should be able to get insurance under the Affordable Care Act even with active cancer treatment.  That is part of why the law is so important.  You should be able to sign up in November and get coverage starting January 1.  That is where I get my insurance and hopefully it will continue to be available, but there is no telling with the political situation.

NHMike
Posts: 214
Joined: Jul 2017

My insurance company shows me what the services charge, the negotiated rates and my parts of the bill. So far, everything has been in-network so they pick up 90% of costs. Out-of-network stuff is covered at 70% of costs. And I'm about 80% of the way to max out-of-pocket though it appears that out-of-pocket doesn't apply to drugs. Chemo drugs are class three which is the highest level of copay. So cancer is expensive. But I think that I've paid in a lot more than I'll use for the cancer treatments unless there are complications (and I'm not ruling that out as I've seen a lot of stories where stage X turns into stage X+1).

SandiaBuddy's picture
SandiaBuddy
Posts: 1093
Joined: Apr 2017

Mike: Under my policy, the out of pocket max does apply to drugs, luckily, since the capecitabine is almost $3k a course.  I believe that is an ACA requirement.  You might get a copy of your policy and read it carefully.  It sure would be nice if the OOPM covered your drugs.

NHMike
Posts: 214
Joined: Jul 2017

I guess that I will find out the next time I order drugs. They gave me four weeks of Xeloda for $6,300 and my copay was $180 but I didn't see that added to OOP. But OOP is now at max so we'll see if the copay is still there when I do the order for the remaining 8 days. If it covers it, it covers it; if it doesn't, then I'll just pay it. For some reason, they went with the Brand name where there are generics available. I'm assuming that the insurance company approved this or went with this - maybe they get a big discount.

I put a lot of the bills on a credit card and scheduled the payment for the credit card already so I won't have to worry about bills outside of hopefully small stuff until next year.

SandiaBuddy's picture
SandiaBuddy
Posts: 1093
Joined: Apr 2017

My insurance company lagged on posting the OOPM, so that I paid $1,200 more than necessary.  When I appealed this, they refunded it to me.  So it may warrant keeping an eye on what they are doing.

NHMike
Posts: 214
Joined: Jul 2017

I noticed that the insurance company said that my cost on the drugs was $10 per pill type though I payed $90 per type. I should probably look into that. I can see a bunch of issues on OOPM because of the payments lag. I generally pay bills directly and as soon as I find out about them. I am not all that crazy about going through all of the bills by hand but it might be worthwhile to do so. This reminds me of doing tax returns - as much fun as a root canal.

SandiaBuddy's picture
SandiaBuddy
Posts: 1093
Joined: Apr 2017

One of the weird pieces of advice on this forum was to hold off paying bills for a while.  I too am the type who pays a bill when I receive it.  But there is wisdom to that advice as it allows the insurance company to catch up with the bills and allows you to dispute the insurance company's determination.  It appears in the world of medical billing a bill is not late for months after the invoice goes out.  I keep a file where I match all the bills and insurance payments, as well as a spread sheet of my OOPM.  I guess that is something I will need to keep doing for the rest of my life.  

NHMike
Posts: 214
Joined: Jul 2017

My health insurance company, United Healthcare, actually recommends waiting and they give a number of reasons for waiting - including "You may have already paid part of this bill". So it's not wierd advice - there may be a good reason for doing so. I'm like you, though. I don't like to owe anyone anything. I even leave a credit balance at my dentist because they bill the insurance company and by the time the insurance company pays, the bill is past due by the time it gets to me and I had some late fees many years ago. I determined that there wasn't a way to stop this short of calling them every week so I just leave a $100 credit balance to take care of anything that insurance doesn't take care of.

Obviously the amounts are a lot larger with cancer and the insurance company isn't going to go through and send you a refund unless you ask for one (if they actually do send me a refund without being asked, I'll be floored).

I need to set up a spreadsheet similar to yours. My feeling is that I'm over the OOPM by some amount but that the amount is small, maybe $500 at the most.

I know what you mean about them accepting payments some time after the first due date. I had a dispute over a charge for one of my kids. It was basically a problem between the list of approved doctors between the hospital and the insurance company. It went back and forth for 18 months and I had to call both on a regular basis as they kick it back and forth between them and then kick the bill back to me. I'm pretty sure that it cost both organizations more in clerical time straightening it out than the price of the service.

Bellen
Posts: 281
Joined: Aug 2016

Hello - I had very low white blood cells, which compromises your immune system - had chemo delayed and cancelled.  I was prescribed white blood cell shots that cost about $2000 for 5 days of shots. Just these shots would have cost over $20,000 for the year.  This was at the beginning of my treatment and it created considerable anxiety for me - added to the anxiety of dealing with my cancer diagnosis, and being told that I was inoperable and would have to have ongoing chemo - no end in sight.  I applied to a program called Victory through a Drug Assistance program at my cancer center.  I live in Canada, but I believe it can be accessed through U.S., or there might an assistance program through the Drug Company.  They provided "compassionate" vials of the shots I needed.  A few months later another drug came forth that was covered under a drug plan I have.  This was a huge relief.  Having cancer and dealing with so much is bad enough.  It is a shame to have to worry about financial coverage of our treatment.  I spend enough on laxatives, diarrhea med, creams, food supplements, wigs, hats, driving 5 hours back and forth for treatment, having to pay overnight hotel if I need a blood transfusion as well as my chemo, etc as it is.  Wishing you well.

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