Cost of Cancer

I'm one of those that had good insurance, and still had to spend all our savings and cash out my IRA, and I still needed help from the local CA association and my oncologists, to get all the treatment I needed.

I came across an interesting website:  www.healthcareforamericanow.org which my U.S. sisters might be interested in.

Linda

I still think we're all doing the best we can to make the decisions that are best for us.  We're all entitled to pick the therapy we feel is best for us in our particular situation, and we're all different.  One of the best parts of this site is hearing different opinions and thinking about them.  I've thought a lot this afternoon about Octobergrace's comments and her opinion regarding the affordability of universal health care. 

Octobergrace you are right on regarding the need for compassion for our neighbors and what lack of insurance or underinsurance is doing to them.  If the answers were easy, we'd have them already. The following article gave an interesting analysis of issues regarding this.: http://content.nejm.org/cgi/content/full/360/20/2045

To all of you, above ... 

I am, at fault. I do come across, as harsh. And I apologise.

For my part, I've been dealing with this "breast cancer threat" since November, 2002. Nine years, ago. And as of May 23, 2009?  

In all of that time, I've had the one breast cancer. the 2006 2cm IDC cut out, with huge margins. And before that, the 2004 butt Leiomyosarcoma. Also cut out, with huge margins.

But in the meantime, all of these TESTS?

Again, I am not talking to anyone who has a Stage 2 plus, cancer. With mets, or no mets. I'm talking about people, like me.

Stage 1, no mets, no node involvement, surgery cured it.

I don't understand why you are obsessing, about it. Meaning, you women with "Stage 1, Over 50, no mets, no node involvement, surgery cured it." Like I was trying to say above, when so many other things can go wrong, with your body.

I had Leiomyosarcoma. When I got that diagnosis, in December, 2004, and then read everything on the Internet, I thought I was dead. Nobody survives that cancer.  

As it turned out, I got this external butt version that was cured. I have a colleague, where I work, who got the uterine internal version, the normal presentation, for Leio, and she's dying. 

After spending the last 18 months, going through Chemotherapy.

Chemo is what kills you.

My sister, a survivor of Stage 3 Ovarian cancer sent me this report that polled oncologists. And 70% of those docs said if they got cancer they would NOT get chemotherapy.  

Aprilgirl 1 wrote:

"We cannot predict the future.  You cannot guarantee that a stage 1 node negative tumor does not have recurrences.  It happens all of the time.

 You're absolutely right, Aprilgirl. There's no guarantees, for anything. In life. Life is a risky business. And I have a very high, risk tolerance. 

Yet, I've taken steps. I'm doing the FOCC. Eating right.

Then, Aprilgirl wrote:

Leia - I would REALLY like to hear what you have to say - especially the comment that I am obsessing about my breasts?  I really had to laugh at that - don't really know what you meant....I am way more interested in doing all i can to avoid systemic recurrence.

What I meant was, if you're worried about breast cancer, cut off your breasts. 

Yet again, back to this thread. The Cost of Cancer.  

WHY should society pay for you, Aprilgirl, to cut off your breasts because you're "afraid" that this Tricky breast cancer will come back?

What about these 47,000,000 people that have no coverage, at all? They're not getting any mammos. They're not getting anything.

And my point, when these 47,000,000 million people ARE covered, with Obama's "sick care," you won't be getting any treatments, at all. 

Aprilgirl, I'm a CPA. It doesn't add up.

It literally, does NOT add up.

There are only so many T-Bills (our national debt) that China will buy, before they just say .... No. And Obama's entire "health care plan" and his "stimulus bill" and his "budget" is dependent, on China. Financing it, with China buying the Treasury Bills.  

To pay, for the US Government. AND your breast cancer "treatments."

This will just not work. 

Octobergrace,

Personally, I would like to see the words profit and health care never be associated together again.  What I get concerned about more then the profits an insurance company makes (after all, they never claimed to be non-profit), is the amount of personnel it takes every doctors office and hospital or health care system to work with those insurance companies and untangle the mass of regulations, different forms, etc.  There are consulting firms that go in to work with those personnel to help them  (including Medicare)  maximize their billing.  So much wasted money and effort that wouldn't be needed in a universal health system.  I understand that desire of many to require health insurance the way we do car insurance,.  It allows those who are happy now to keep what they have and buy into "reform" but it does nothing about all that wasted time and effort.  I'm not sure we've found a way to pay for the Iraq war as much as we have to charge for it, but I agree with you that it says a lot about our priorities.

One more thought, got thinking about your comment about regulating insurance companies more.  We do regulate electrical companies etc.  There we have managed to work on profit vs. providing necessary resources to the public.  Not perfectly, but it has been done 

I get depressed when I think about how many years it has been since Hilliary Clinton tried to do something.  The only good thing to come out of this economy is it has generated interest and momentum to change things again. 

KMMD, unfortunately, the health care industry is driven by two factors:  Greed and Profit and Ego.   But there are some good doctors out there who really care about helping people.  Our job is to find them.

In the 90's, when limits were placed on doctors income, many of our Canadian doctors took their practices to the States.  Within 2-3 years, many of them returned.  They stated that it was the bureaucracy and the cost of bureaucracy that sent them back home.  They spent more money trying to get paid for their services whereas in Canada they were guaranteed payment.  Many of them also stated that they felt that they were constantly being questioned about what they thought was and wasn't necessary for their patients.  Although there are guidelines of tx to follow here, a doctor seems freer to make his own decisions as to what he thinks is appropriate.

As Americans living in this system, is this a fair assessment? 

I can't say that it has been enjoyable, but I read through all the previous posts. I'm thankful, though, to the Idaho person who raised the question originally. And I'm glad this place offers us the chance to hear about each other's situations first-hand, and how they are handled in different parts of the world. The up side of a place like this is that it is a place where no matter how differently we are treated or how different the choices we make are, we can learn from each other and support each other. The down side is that we can let the disease and treatment make us so angry that we take it out on each other. 

I have a concern about one of the hidden costs of current standard treatments for cancer that needs to be investigated both in terms of the human costs and in terms of the economic costs. The one percentage that I never see mentioned as part of research studies documenting the effectiveness of current therapies is the percentage of cases in which the therapy used actually contributed to recurrence/development of cancer.

Most of us are not scientists. As humans placed in jeopardy by the disease, and as humans who are getting therapy that that is very technically complex, we want treatments to work and we look to experts for answers. But without demanding that those experts provide the answer about that missing percentage that is never accounted for in determining which treatments to have, we are leaving ourselves wide open to huge costs for ALL of us.

The second question related to cost is in regard to the percentage of success with treatments. I had chemotherapy and radiation myself, as well as tamoxifen, and have not had any known recurrence thus far through 7 years. But am I being automatically counted in the numbers supporting the use of these treatments even if by pure chance none of them did anything to prevent recurrence? I don't see anything mentioned in the studies about various treatments that gives the percentage of those whose treatment did nothing to treat cancer.

I think both of these are huge costs to us all, that we just don't "see" most of the time because we are so desperately wanting treatment to work.

I know this is a thread primarily about cost and not about which treatments work or which ones don't. But I do think that because these treatments are spendy, we have to at least think about these hidden questions and percentages and discuss them, and how best to hold the experts more responsible for recognizing them and specifically counting them and reporting them.

One last suggestion. No matter where we live or what health care system we have, we need better representation on tumor boards that discuss and set our treatment recommendations. Our surgeons, and radiologists and oncologists all have their say; but where is the opportunity for non-toxic experts to have their say? Given that breast cancer is a disease of the ENDOCRINE system, why have our education systems not trained and provided us with people who are knowledgeable about the relationships across the complex endocrine system balance of the entire body to help find the best treatments for us?

AlaskaAngel

AlaskaAngel, you bring up so many, good points. 

Last week, in the Wall Street Journal, there were four physicians writing letters, in response to some WSJ story, about ObamaCare.

And these docs were in unison. Bottom line, they "order all of of the tests," even when they, as docs, don't see the need, because they do not want to be sued. Because the useless tests are the "standard of care."

If Obamacare comes with the provision that no doc can EVER be sued, I'll think about it.

But then, that will never happen, the TORT lawyers are Major Obama contributors.  Along with the Unions and all of these other "vested interests." 

Obama is like the deer in the headlights. He doesn't know what he is doing.  

But he is a VERY smart guy, I'm hoping, he can grow, into the job.

Well, sorry, I'll shut up, this is NOT a political board.

But to get back to AlaskaAngels post ...

I think she said that we need docs to treat us as humans. And NOT as this "breast cancer" person.

And she is exactly right.

And for my part, that is why I don't believe in "cancer specific" treatments. Other than, surgery, which literally cuts the cancer, out.

I TOTALLY believe, in that.

But all of this chemo and radiation and blah blah. No.

But then, with Obamacare, no more chemo and radiation, for Stage 1 cancers.

I apologise, I'm repeating myself.

Personally, I think that is GREAT! Because for Stage 1 cancers, those treatments are worthless. 

Most of you women on this board, disagree.

But again, bottom line. As us CPAs like to say.

It's financially unsustainable.

Whatever you say Leia.  Speaking only personally of course, I always take the advice of accountants over medical professionals when it comes to health care.  The training of a CPA in medicine and even in finance is superb.

As to costs, I'm not sure it really makes any difference what the charges are because they will be reduced by either medicare/medicaid adjustments or contractual adjustments for in network insurance contracts.  Most health providers will only get by charging the going and customary rates  in their part of the country.  And just because they charge it does not mean it is a reasonable charge.

BrendaR, my Taxotere was $10,000 each time, that's before the other drugs , physician costs etc.  That amount just covered the drug. 

It is hard to talk about cost of cancer without bemoaning how it is paid for.  We'd have been devastated without insurance, but the out of pocket expenses are still very high.  To say nothing about the time and energy wasted on the phone with the medical center and insurance company straightening out things that were billed or collected or denied inaccurately.  Still fighting to get the oncotype covered despite the written report we had stating they would cover it.  They later flat out refused.  I'm already losing sleep worrying about trying to get my next imaging in and trying to do it within this years co-pay and out of pocket expenses rules, but still within the time period that they agree to cover the next mmg.  Don't even want to think about fighting about the MRI one of my doc wants.   

So, I'll throw this question out there.  I'm latex allergic.  After my last surgery they wrapped me in a latex bandage.  When I got home they called to tell me they just realized it.  Sure explained the intense itching I was complaining about.  So, DH had to call around town to find the bandage the surgeon wanted that was latex free, and drive across the city to get it.  Got my bill from the OR.  They charged me for the bandage I was allergic to and we had to replace.  $50.  We can't stand the thought of calling and complaining, we're sick of the constant fighting about bills and insurance.  But the principle of the thing really ticks me off.

What would you all do, call and make them take it off the bill, or do what I did and suck it up and exercise an extra hour until my anger subsided? 

The variation in costs of chemo in different areas of the country are just outrageous.

For me, it was the Herceptin that was so expensive, and I spent time on the phone with the insurance company and the onc's pharmacy and billing services, while I was so sick I could barely talk. 

I had a "case manager nurse" provided by the insurance company that was supposed to help with that stuff, but she told me the Herceptin was something she couldn't help with. I kind of thought well what's the point of you calling me then?  All she did was ask how I was doing and what and when my next treatments were.  There were several times when I was too sick to talk to her. She was nice enough, it's just that she really did nothing to help me, and I felt like she was calling to see how they could keep down the cost of my treatment. 

The insurance company sent a survey out later, about the case managers job performance, and I stated that I thought it was a waste of their money and my time. 

So far so good with my insurance company covering surgery and chemotherapy.  Once I met my$4,000 deductible they have picked up the rest.  I am now starting on Aromasin.  I discovered our drug plan has a $2500 cap for the year. With all the prescription for anti-nausea pills during chemo I have reached my cap.  My Aromasin will cost $901 for three months, so for me to take it for the rest of this year I will pay $2,703.  I am going to ask my onc. if I can take it every other day.  Even next year when I start a new cap it will cost me $1100 after my cap.  It will be probably be years before the AI drugs are available in the generic form.  I just don't see how a drug needs to be that expensive, all the AI drugs are $900 plus for a three month supply. Hopefully I can get into the biophosphate trial or the Boniva will be $300 for a three month supply.  Please excuse my rant, compared to others I feel fortunate to have good medical insurance, just wish the prescription plan was better. 

Leia, there´s something important that I don´t understand about your position.  I understand that you had your cancers removed surgically with wide margins (which is really really wonderful....), but how would you know what your stage or grade was (which is reassuringly low) without the tests with which you disagree so much?  Will you just refuse any further tests in the future?  The disturbing thing about this disease is that it seems to recurr in the most unusual places....without further tests, how are we to find them?  I had full mammo and screening 3 months before my 3.5 cm. IDC grade ll was found...that seems like a pretty quick growth.  Makes me a bit nervous about the future.  I welcome the tests.  I´m in Canada, so they´re not making massive profits on my tests, and 3 years out, I´m not getting tested a lot, but I´m in the hopper for care, and expect to receive some tests as I go forward...I am thankful that.   It´s like you´ve got a magic line in the sand composed of Stage ll, where you´d okay additional medical measures, but it seems like even Stage 0 can wind up with recurrances....Anyway, that´s what I don´t understand about your position.  Hope you can clarify.  And further on Budwig...a LOT of us are taking good care of ourselves, with healthy diets, (of various stripes), some organic, some vegan or vegetarian, you name it, both before and after our diagnosis and it didn´t change our outcomes.  I think this little f*cker of a disease is more complex than any of us can guess.