Cost of Cancer

Teild · May 2009

Leia, why do you keep insisting that neither chemo nor radiation benefit people. They do. There are studies that show that some women given chemo have fewer instances of distant recurrence than a control group who didn't. So some women ARE cured by chemo before the cancer has had a chance to get a hold of the body. Are these studies frauds?

Leia · May 2009

Karen, yes, you're right. I'm AM inflammatory, in my posts.

And you know why? Because I've been dealing with this breast cancer bullshit, for the past seven years.

What was that cancer, in the end? A 2cm IDC, cut out, with huge margins. But for which I've had to pay, just myself, $10,000. Any my insurance company? $100,000. Over the past, seven years. Not to mention me and my insurance company have had to pay for the Leiomyosarcoma "tests."

HAVE I "turned people off this thread." I guess I've turned you off, you're never coming back. But other people?

Karen, you said:

"You are shrill and your arguments are distasteful--and they lack evidence--no matter how effective the Budwig protocol may be, nobody is listening because they can't get past your delivery.

What, we're all "delicate flowers, here?" But ha, I guess I'm being "distasteful," again. (?)

But my Budwig statements do NOT lack, evidence. I posted links to Dr. Budwig's books. Or just, go to Amazon and type in Johanna Budwig. All of her books, come right up in the search.

Karen, not a harsh email, at all.

Like you, Karen, I should just walk away. From this thread, and from breastcancer.org. And as I get happier, eventually I will. I'm not sure why, I'm still here.

I guess I just see all of this ... inanity, with cancer treatment. All of these useless treatments. While Obama, et al are just clueless.

And I find that especially intriguing your comment, "Obama a highly educated, insightful man, who taught constitutional law doesn't know what he's doing"

He taught constitutional law? WOW. Than how does he even support stripping the Chrysler bond holders of their constitutional rights, and giving them to the UAW? Contract Law. Oh, opps, the UAW supported him, with their $$$.

Sorry, totally inappropriate on a breast cancer thread. But then, you brought it up.

Leia · May 2009

Telid wrote:

"Leia, why do you keep insisting that neither chemo nor radiation benefit people."

Telid, did you see that Farrah Fawcett documentary on Sunday Night? The one about her anal cancer.

Well, I did not, but I did watch the Larry King show that featured that, tonight.

And they showed a clip from the documentary where Farrah Fawcett said this chemo and radiation was just so debilitating that she could hardly continue living, she'd never hurt so much, in her life, but she was told by the doctors this was the only way and so she was just ... trying to keep living. And suffering, through the treatments.

Then, Larry King says to one of the anal cancer docs on the show, "If the treatment is SO BAD, why even do it?"

The doc he questioned trotted out the usual reasons, basically it's the "standard of care."

Telid, that is what ALL the docs say. It's the "standard of care. "

And I know there are studies that "prove" whatever. But with Radiation and chemo and breast cancer, these studies are 30 years, old. Before they had digital mammograms and Breast MRIs.

But now, we have these. And yet the docs are implementing 30year old, "standards of care." When we didn't have these.

As I wrote, above, I had a surgical breast biopsy, on a MRI-Negative breast. And ha, the biopsy, was negative. But not before $$$$$$$ was spent.

That IS my point.

We can't do this, anymore.

And Farrah Fawcett should have had no treatment, at all. She would have been better off. Instead of this living hell, her life has become. With all of these "treatments."

konakat · May 2009

I can understand Leia's frustration with the expense of the tests, and the stress of waiting for results. You get good news and then perhaps resent all the stress you were put through. I understand that. It makes me think of paying for insurance for years and never needing it. It seems like a waste if you never need it, or aren't sick. Are tests done that aren't called for, perhaps. I gave an example here or another thread about getting an IV drip instead of a simple pill. However, if these tests find a malignancy, thank god for them -- especially if you catch the cancer early.

For me, the tests have been worth it. The chemo has been worth it since I am stage IV. And no, I'm not suffering. I continue to work, enjoy the lilacs (my fav) and other delights of spring, host a party at my place every month for 40+ people, enjoy my boyfriend. Chemo has been an inconvenience (sometimes a big one!), but it hasn't stopped me from living. If I didn't have chemo I would be dead, or at least in palliative care by now since it was so aggressive. I chose chemo instead of doing nothing and letting my body rot away with cancer.

By choosing chemo I am choosing life. To say I would be better of with no treatment is like saying I'd be better of dead. No thank-you.

pip57 · May 2009

Well said Konakat. I too can understand the frustration one might feel if you thought that you have endured unnecessary testing. And thank goodness that some of these tests seem to have been for nothing. For all of those that had 'unnecessary' tests there are many of us that have been able to identify our disease and fight it head on.

I would also agree with Leia that a lot of testing is done for financial reasons. But I would also hate to see tests that were NOT done for financial reasons.

Leia · May 2009

Thank you, both Konakat and prettyinpink100.

Because, Konakat, I did not have a Stage IV diagnosis. Or, a Stage 3, like prettyinpink100. I had a Stage 1 diagnosis. With no node, involvement.

We're totally different patients.

Yet, the Medical Industrial Complex treats us all, the same. And it just does, infuriate me.

If you choose to accept the treatments, than I think that is totally appropriate. You have very serious, cancers. That need to be dealt with. And should be dealt with.

But me? I did not have, a serious breast cancer. I did not. And I did not have a serious Leiomyosarcoma cancer, either.

Both of my cancers were successfully cut out, with surgery. With WIDE margins.

Again, to get back to the point of this thread. the "Cost of Cancer."

Medicine should be focused on treating YOU, konakat and prettyinpink100. NOT me.

Hello, this will NOT kill me. But it could kill, you.

So what is wrong, with this picture? And sorry, another of my faults, I keep repeating the same thing, but why do the docs continue to perform double mastectomies on 2MM DCIS patients?

IMO, that what is really causing the USA medical costs, to spiral out of control.

And all of these needless, additional treatments, for people like me with Stage 1, 0/2 nodes breast cancer. This radiation, etc. Unsustainable. When they should just be focusing on YOU.

You're the ones with the serious cancers. NOT me. With my stupid 2cm IDC, 0/2 nodes. Cut out, with huge margins.

When Obama gets his way, this will just all ... end.

It is not physically possible, to do.

As a libertarian, I hate this future government "control." But as Leia, I welcome it.

I won't have all of these docs, inflicting all of these useless procedures on me, anymore. I've just been through ... hell. the past seven years.

There will just be no treatments, at all.

Ha, there's only so much $$$$$ we can borrow, from China. Before the entire thing, blows up.

I've chosen my course, the FOCC. Konakat, you've chosen, chemo.

To me, that is what living in America is all about. Choice.

But Obama wants the government to decide, everything. And I will never agree with that. Ever.

Brenda_R · May 2009

I think you may be deluding yourself if you think any cancer, no matter what size or stage, is not serious, or that you can not die from it. You may want to look through the Stage 4 forum and see how many started as Stage1, no nodes, or even DCIS.

If you want to roll the dice and not have chemo or rads, that's your choice, and I hope that it never comes back to haunt you.

Whether any other woman wants to forgo treatment is a personal choice, and I'd hate to see anyone's choice taken away because someone thinks it's a waste of money.

But it is also every woman's choice to turn down any treatment she chooses. No one forces any adult to get chemo, rads, or even have surgery. They might strongly urge, but no one can or will be forced.

It is a choice, and people are free to make it.

konakat · May 2009

Leia's dx shows an excellent prognosis -- I think she's got this thing beat. I agree that over testing on someone with such a good prognosis is wasteful -- money's better spend on people in danger of the cancer returning, or are in treatment. Even if I was early stage, a part of me would still want the tests just to be sure. But another part of me would much rather have the money spent on someone who needs it - it would be wrong that I get a test/treatment when someone needs it more.

What socialized medicine is about is not throwing money away when there really isn't cause to test or perform surgery and to use the money where it's needed. I don't see a difference between the gov't or insurance deciding on our treatment, other than the gov't wouldn't be wasteful and trying to make a profit. That's a big difference. With socialized health care there wouldn't be wasteful spending -- and that's what Leia's against, me too. We're just coming at the solution from very different viewpoints.

What bothers me is hearing about women, anyone, that have such outrageous medical bills, like the woman who started this thread. How her insurance has let her down. That is a sin as far as I'm concerned. For now I have excellent health insurance and I was under the assumption it was the same for everyone -- what a shock to find out all the financial hardships others are having.

This is the US -- the country a lot of people dream of coming to and it can't take care of the health of so many people. That's why I prefer Canada's socialized medicine -- what I see in these threads about financial hardship or not being able to afford care would never happen there.

I wish I knew the answer for the person (idaho) who started this thread -- are you still following this thread? I can't remember how much my lumpectomy was -- I can't get that far back in my claims online. My ovaries out was about $8000 with all the tests. And my chemo cocktail ranges from $4000 - $7500 each week.

All I can think of is doing what the hospital did for me when insurance didn't want to pay -- they started writing letters until the insurance did pay. The drug companies have programs to help pay for chemo and hormonals. I don't know how to get financial support, I don't know the system here since I've only been in the country for 3 years -- can someone else help out idaho?

konakat · May 2009

Oh, one more little thing -- about a year ago I was talking to a woman during chemo and we got onto healthcare. She was on vacation in Canada and broke her leg. She said the total cost of the MRI, misc tests and getting the cast on in Canada was a fraction of what it would cost here in the US -- I don't remember how she got to compare the costs. Anyway, my point is is that you get the same care in Canada as the US, but without the padded money for a big profit margin. In her case it sounded for the same cost you can treat two people in Canada and 1 person in the US.

Which leads me to another peeve. I see in my claims statements that my doc will charge, say $100 but with the deal with the insurance companies she gets paid $80. People who don't have insurance have to pay $100. If anything, it should be the other way around -- people without insurance should get a lower cost - it's only fair in this unfair setup.

OK, I'm done blathering on for now. Too much time on my hands....

Elizabeth

idaho · May 2009

Thanx Elizabeth, and yes I am still following this thread. I am now in debt not just the $20,000 for my lumpectomy, but another $15,000 for radiation. It is just sick and wrong that my 5 minute radiation session each day cost $379.00. I know the machine was expensive, and you have to pay the Doc and techs, plus the cost of the building. But times $379.00 by about 26 people a day (I am being VERY conservative), and tell me that does not pay for those expenses with a lot left over....My insurance thinks they are being very generous to pay $3,000 of that bill. I will NEVER be able to pay off the rest. Leia- I am not a big Obama fan either but at least he is willing to TRY to fix the problem- no one else has. If he fails, then we can hopfully move on and try something else- the system as it is now is simply not working. Tami (In my next life instead of paying insurance I am going to put it in my kitchen drawer- I would have been so much further ahead.)

pip57 · May 2009

It breaks my heart to hear stories like this. And yet Americans seem to be sooo fearful of 'socialized medicine'. Honestly, in Canada, I have not been denied one test or tx that has been necessary. Nor do I feel I was treated or tested without reason. My follow up has been excellent. Is our system perfect? Of course not. But I would not trade it for anything! I have NEVER had to consider the cost of my care when making medical decisions.

konakat · May 2009

Oh Idaho -- this is terrible! I looked at my benefits and for a chemo treatment of $7000, the actual drugs cost less than $1000 -- the rest is to pay the nurses, oncologist, hospital. It's outrageous.

I don't know what to do -- for now just keep getting the treatments -- that is the most important.

Can you go on long term disability from work (or is it AARP?) benefits and then COBRA? Your dx looks like you're going to be looking at a cure and this will be the only time you have this expense. Maybe just get all the treatments and then declare bankrupcy if that works out better than paying down the debt for years. Sounds awful and a terrible suggestion, but I don't know what else there is to do.

Surely there are more women here in the same boat. I'd try posting a new thread with a title such as "terrible debt from treatments, is there help out there"? That way you might get some more women with some suggestions for you. I hope so!

konakat · May 2009

I thought of something else -- several times I've seen a fund raiser in my community to help out with medical expenses. I don't know how you would feel about this. It is humbling, I know, and you may not want to go that route.

I've seen fundraisers organized by a church, sometimes by well-wishers. One was really well done -- it got some community businesses to donate services and a raffle was held. Touristy things are interesting -- in my neighborhood someone donated a day of deep-sea fishing. Things locals would like to do but never get around to it or it is too expensive.

There're probably suggestions on the internet somewhere on how to do this. If you don't have a group to help, this would be perfect for a young person interested in business or fundraising. Imagine the impact it would have on a college application.

I have found in the US that people are very community oriented and pull together to help a neighbor so it might be worth a shot. I hope you take this in the way I mean it, not to embarrass, but to try to come up with an idea to help.

Alyson · May 2009

Hi there from a very chilly island in the South Pacific. It is about 46 here at present and might get over 50 if we are lucky.

It is the same here in New Zealand. There might be some delays but on the whole when you need treatment you get it in the Public system. We have a private sector as well and many of us use it for non-urgent and elective surgery because of the long waiting lists in the Public hospitals.

I had my mammogram, tests and mastectomy etc privately, then went into the Public for chemo. I could have had the op in Public but we have /health insurance so I decided to stay private. I could have swopped at this point butdidn't. I wouldn't have had to wait any longer. Chemo and Radiation were done at the hospital and I didn't have to wait at all. There has been some problems with radiation waiting times but I was lucky and the government has said that 4 weeks is the longest anyone should have to wait.

Follow up care has been excellent.I have been seen every 3 months and from now on 6 monthly. The femara is free through the hospital and we pay a small surcharge on other medicines.

I know we have had problems with certain drugs - herceptine for one but that is now on the free list. For me I was very lucky as Taxol came on to the free list just a few weeks prior to my dx. Availability and cost are problems with living in a small country - about 4.2 million people, nevertheless we have a first class health care system and in many areas are at the cutting edge of medical developments. Yes we do pay through our taxes but thats fine with me. I know that if something goes wrong for any member of my family I can ring an ambulance or go to the hospital and they will be treated free of charge. We think we are hard done by because we have to pay about $23 US to vist the GP. And yes the blood tests I will have done tomorrow are free and the results will be sent my GP and to the hospital.

I know my aunt and family in Pennsylvania struggle with health costs and it really concerns me. I think it will take a very long time to sort out health funding in the USA. Like Prettyinpink I am so pleased that I do not have to consider cost when it comes to health care.

Alyson

konakat · May 2009

Ha! I have a friend in NZ and she tormented me all winter long with pictures from her garden! Now I can get her back!! It is interesting that it's Canada, NZ, England that have socialized medicine. I assume it's the same in Australia? I wonder about other countries?

There're always rumblings of a "2 tier" system in Canada -- sounds like that is what NZ has. It seems to be the best of both worlds, or a reasonable compromise. Maybe we can all learn from New Zealand's model of healthcare.

Alyson · May 2009

There are problems here of course but generally the 2 tier system works. The private system takes the pressure off the public one. Australia has a similar system as well, I think you have to have medical insurance but there is certainly a public system.

Konakat, where does your friend live because parts of the country are under snow!!

Alyson

crazy4carrots · May 2009

Actually, ALL first world countries have a universal health care system, other than the U.S.

There are many who say Canada already has a 2-tier system, in that there are clinics that offer cosmetic, cataract, orthopaedic and other elective surgeries for which the patient pays the surgeon directly/privately. Some docs who want a real 2-tier system want to operate outside the hospital but be paid by the government. (And there is a small hospital in Toronto which does only hernia ops, but it was started probably 50 years ago before OHIP was instituted, and hence was "grandfathered").

The great concern about this is the fear that many of the "best" surgeons will leave the hospitals and go private -- but I think it would not make economic sense for them to do that. They really just want to get away from hospital-imposed strictures on operating times.

That being said, the great concern that many seem to have about "socialized medicine" is that there would be rationing, and that one would have to wait too long for tx. That doesn't happen here: you get the tx you need, and if you need it immediately, you GET IT immediately.

Idaho, have you checked out bc.org's info on paying for your health care? I haven't looked at it (doesn't apply to me) but there may be some very useful info there. I feel for you...hugs, Linda

konakat · May 2009

Hi Alyson,

My friend is in Greytown, just outside of Wellington. Any chance snow's there? Hehehe.

Alyson · May 2009

Linda, the doctors here usually work in both systems. My oncologists certainly do as does my BS. Both oncs are professors at the Medical school here as well so they are really top in their field. Often the public system here will put certain surgeries over to the private sector to try to clear waiting lists.

I really feel for all those who have to pay for their medical care. I know in the past people here have raised large sums of money for treatment with herceptine and taxol because the gov wasn't funding it but that is a problem of living in a small country.

Konakat. Greytown is unlikely to have snow but it does snow on the hills between Greytown and Wellington and the road can be closed. There was a snow warning for the area for today. The temperature for today is 47 going down to 37 over night in the Greytown area with rain showers.

Alyson

Fitztwins · May 2009

Unfortunately people with DCIS (or stage I) can present with mets. Please don't fool yourself into to thinking you are a 100% safe. This disease is tricky.

I have known ladies who did the alternative route and didn't make it. I am heart broken for those that don't have good health care. I am glad that ACS helps those in need. I would gladly help those who are less fortunate. In my first two years I paid 8K out of pocket for my treatments and reconstruction.

All of the pills and chemos has made a difference in my life. I am almost 5 years out. According to the stats I should be gone. If you ask my sons who were 4 years old at the time of my dx if health care made a difference, they will tell you yes and so will their dad. I am here to today because of all of the treatments.

Yes, they suck, yes they are $$. I don't think eating flax seed (not good for er+) or any truly 'cancer' diet is going to make the difference.

This is a frickin' tricky disease that mutates. There are many forms of cancer. I just get so frickin' angry when anyone says that the 'company machines' are withholding a cure. Or that some bullsh*t concoction of stuff will cure you. If I had the magic cure, I would give it away free. Not hoard it and sell it through some mexican clinic or book. Seriously? I would not bet my life on it. I am too much of a realist. I put my money on research and education.

I know of too many who had the perfect diet and it didn't make one frickin' difference.

If I knew that I would become stage IV, I would have mutated myself years ago. My life is worth more than my breasts.

Leia please be mindful. Until you walk in the shoes of a stage IIIer or IVer, you have no idea what some of the medicines can do for us.

I truly believe I am alive today because of Herceptin. Not some wheatgrass and self-help tapes.

just my opinion. Flame away.

I have been on this forum for almost 5 years. I have seen a lot. I am jaded. But in a difference place that you are.

I believe that cancer happens.

mzmiller99 · May 2009

Fitz - well spoken. Hear hear!

Anonymous · May 2009

Fitztwins - AMEN! All I have to add is that I chose to have chemo, even though I am node negative for the reasons that Fitztwins stated. This disease is tricky, and no one can say they are cured.

Chemo is not that bad (not as bad as the movies make it out to be) and I am very thankful for tests like the oncotype dx - they are trying to tailor our treatments.

Back to the original post - cost of cancer. My husband went thru a corporate layoff in September and I was diagnosed in November. Our cobra is $1200 a month and the chemo is another $1200 a month - and I am on a 6 month chemo plan. Cancer is EXPENSIVE!!!! I haven't had time or energy to add it all up, but it is astounding and this is with good health coverage.

This will be the year that we can write off a portion of our medical bills due to lack of income and high medical expenses.

We have savings, and it has been helpful for my husband to be around for the kids vs. gone at work all day, but I have to say it has been one HECK of a year.

Susan

Leia · May 2009

Aprilgirl1, you're electing to pay $1200 month, for chemo, for your Dx 11/7/2008, IDC, 1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR+, HER2- Cancer.

Why? Because this breast cancer disease is "tricky?"

Susan, there are no guarantees in life, for ANYTHING. To just repeat, the obvious, do you really think this 1CM IDC is the worst you can get? The worst illness, in your body. Before you finally die.

Because we all, die.

And you know what? There's LOTS of other body parts that can fail, while your are obsessing, about your breasts.

Ha, I guess you think that, every woman should just get a double mastectomy. And then, there would be no, breast cancer.

As I've said, I had a 2CM IDC. And I did nothing, other than cut it out. No radiation, no drugs, no nothing.

And three years later, I'm GREAT!

But, like you, I have lots of other body parts. I'm 54 years old, eventually, one of them is going to kill me. Or hopefully, it will just be the eventual, failure, of all of them.

Old Age, it's called.

My question, Susan, WHY are you paying $1200/month for chemo for a Stage 1, Node Negative cancer?Less than 1cm.

I really am, stymied, by this. I don't understand this, at all.

I had a 2cm cancer. Cut out, with huge margins. And I did no treatments, at all, and I feel great.

What do you think you're gaining? I guess a "heads up," on the "tricky breast cancer?"

What does that even mean? What's the "tricky" breast cancer? That's just nonsense.

I just think, life should just be lived!

Katalin · May 2009

Leia, I don't know how to say this without getting myself banned, but do you have any idea how harsh you sound? Don't you think we all have thought 17 ways past Sunday on what to do about our treatment? What if someone said to you: I had a 5 cm IDC and didn't have it chemo'd, just cut out with clear margins. What about 8 cm IDC? How do *you* think you can be so sure about your outcomes? I'm sure we may not find the 8cm. IDC woman on this website, but she's out there somewhere, with a ticking time bomb in her body. Are we scared? Yes. Are we doing the best we can with the info we have? Yes. Please don't tell someone that their opinions are just nonsense. Not fair, not kind, not compassionate. I think life should just be lived too. Please give us all a bit of room to have our own opinions. Do you realize Leia, that some of us come here after the fact? After the fact of diagnosis, surgery, chemo, rads, whatever? Do you understand that you may be really hurting someone's feelings by coming on so strong? I admire you for feeling so strongly, but please, think a little before you come down like a bag of hammers on someone. Good luck with Budwigs...good luck with your choice, but please respect the rest of us. We're not all the same!!

Anonymous · May 2009

Leia - WOW. I am not obsessing about my breasts - such an interesting comment. I actually had invasive breast cancer.....

I support your decision to avoid chemo - and I really, really am happy with my decisions. I have incredible doctors - the best in their field. I am 10 years younger than you, have young children and plan on being around a long time for them. If I were post menopause I may have chosen to not have chemo, but I doubt it.

In addition to my oncotype score which was high intermediate, I have an acquaintance that had similar stats to mine - node neg, 1cm IDC er/pr+, her2-, grade 2. Sounds simple and straight forward. She, like you chose to do nothing (actually did vitamin C infustion therapy) no tamox, and not chemo.. now has METS 2 years later. Did you get that - node negative and has mets. It does happen.

As you state, life is for living - which I am. Did I say I am not? I feel GREAT! I am almost done with my chemo which honestly has not been bad at all.

The "tricky" part is that node negative does not guarantee that invasive cancer did not spread thru your blood stream. There is no guarantee - so live it up!

I think you need to respect my choice, as it is only mine to make - and i will respect yours.

Katalin - thank you for supporting me in my decisions and doing so in a respectful manner. We are all in this together even if we make different choices.

ktym · May 2009

Leia: I ignored and passed by the other posts, but can't on the last one. That really was just not nice. Some of the things you said have been posted on the "Worst things someone said to me" thread. I'm shocked to see it from a fellow breast cancer survivor.

Leia: have actually agreed with a few things you have said in your comments. do think alternative methods have something to them, I just think we don't know enough yet to know which women will be best off with which method and which women best off with which chemo. The same way they are now trying to figure out which chemo method works best on certain types of cancer or certain genetic makeups. Sounds like you made a great decision for you and found the method that works best for your particular cancer and genetic make up. Very happy for you that you followed your instincts about what was best for you and it turned out to be a good decision.

I also agree with you that there will be some need to "ration" care. Hard choices to be made about how a resource with some limitations will be spread out. Don't agree with you on where that line will be drawn, but do agree with you on that and some of your points. I also share some of your cynicism of the "medical industrial complex".

Aprilgirl made a decision and I fully support her on it. Oncotype is taking us closer to individualizing care. Allowing some women to avoid chemo (saving that resource and money) and allowing others to know that despite the hardships of chemo and the cost that chemo brings the benefit will outweigh the risks. I was one of those for whom the cost was high. Lot of out of pocket expenses and it almost killed me. However, knowing what I know about my oncotype score, and the studies of how other women of my age and tumor type have done--I'd make the decision over again, even knowing what the outcome would be.

We're all doing the best we can with some limited data and no ability to predict the future. I thought the idea here was to share information, teach each other, learn from each other, support each other. Aprilgirl, I'm sorry in trying to do that you were singled out and what I consider some harsh and mean and hurtful things were said to you. I appreciate you sharing your story with us, sure reinforces my view that we need major health care reform.

Edited to add: BTW, I have not, will not, and wouldn't consider reporting your post. I don't think that is what the function of that button is for, but did want to say something because I felt badly for aprilgirl when I saw it. Like the poster above, didn't know how to say it without risking getting banned, but throught something needed to be said.

rinna40 · May 2009

April Girl:

It's a funny thing. Before being diangnoses I thought that chemo is a cruel treatment. Even after diangnosis, when all my scans came back negative, I was prepared for the hollywood "we got it all" and be offerred rads and nothing else. Then I had my first visit with my onc and was told that without chemo I had a 50% chance of recurrance, and with chemo and rads my chance of never dealing with this again would go up to 80%. I'm young too - only forty. I have two young kids. I jumped at that 30%. An older lady who lives down the road from me (late 60's) refused chemo, and is happy with her 'natural approach'. She at first wanted to talk me out of chemo, but then understood that I am at a very different part of my life than she is. She supports my decision. BC is a journey. We have to listen to our bodies and decide what is right for us.

Anonymous · May 2009

kmmd - thank you for this post! I have not reported the unusually harsh response of Leia because if this is how she wants to present herself I would like the record to be here.

I know I am doing what I feel is best to reduce MY systemic risk. I am so happy that the oncotype test is available and many of my new friends have had low numbers and a clear reason to avoid chemo.

I, too believe that there are many alternative and natural ways to combat this. I have seen a naturpath (who supports chemo by the way) as well as a chinese herbalist - will work with both post chemo.

I am also lucky that the cost is not a huge factor for me, but didn't want to get into that. It is expensive, and I do think we major healthcare reform so that no one has to go into debt or add financial burden to a diagnosis of cancer.

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.

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. Happily, healthfully LIVING LIFE!!!!!!

Have a great weekend everyone.

Octobergirl · May 2009

I jumped off this thread as it was becoming adversarial weeks ago. I have begun chemo and am using energy carefully and the meanspirited, accusatory tone in many posts were disturbing to me. I finally stopped posting when my words were reframed unfairly, accusing me of saying things I didn't. I understand that it is easy to reframe words out of context and take them personally when insulted and defensive....more about that later.

My post addressed the fact that despite all of our differences - diagnostically, situationally, financially, insurance-wise - I believe we should a unified view that affordable healthcare shoud be a RIGHT for every person living in the western world. We should have deep compassion for our sisters and neighbors living with life-threatening disease with no means to have quality healthcare. As Susan has reminded us, any of our insurance situations - once thought to be absolutes - can change on a dime. All it takes is a job change/loss, another illness, the death/disablity of a spouse, illness of a child, car accident, house doesn't sell, etc. etc. etc. and it can happen to ANYONE!

As far as affording healthcare for every American, money is NOT he issue, ladies. We already pay enough to have topnotch medical care for all Americans....it just goes straight into the obscenely bulging pockets of for-profit insurance agencies and hospitals and to some overly greedy medical conglomerates.

The person whom I sadly insulted with my plea for compassion for other women without insurance security said she doesn't give a fig what I think. Well, I do give a fig what she thinks....what are her worries and fears and needs in fighting this awful disease....just as I care about each person who posts here. And that is what I want from this site....a sisterhood of people who summon the empathy this disease demands, who can allow free expression and validate the right to exercise and support others's choices which will not necessarily be the same, who can be supportive and compassionate to people struggling with their own decisions, situations and limitiations. Too often here, it sounds like people make sound bite and overly simplified decisions that we " just can't afford and shouldn't have healthcare for anyone who can't pay like me". Or that no governmental solution will work.....will without governmental involvement we are near the BOTTOM of the list of healthcare in developed countries and at the TOP in spending on healthcare....all without government/non-profit administration of healthcare as happens in other developed countries where people can sleep at night without fear of dying from untreated catastrophic diseases.

My work taught me that under all anger lies fear....there is a lot of spoken and unspoken fear here. We all do the best we can to make individual choices which we hope will lead to health....which will allow us time to make memories. I want each of us to be able to make those choices without limititations of not being able to pay for treatment.

Leia, I am glad you have come to terms with your medical situation and have found the right solution for you. Now let go of your anger and angst towards others who are walking this journey dfferently and be compassionate that they are working through their own decisions. No one here should have an axe to grind with your decision nor you with theirs. Informing others about your alternative treatment is sharing information; being angry over other's choices only feeds your anger and that anger feeds unspoken fears and denies joy. Be happy.

Be happy. And what's wrong with giving a fig about each other.....even when we disagree? Honestly, when I read that statement, it sucked all the air out of my room...I may be a little fragile....and I haven't been back here since.

Molly

pip57 · May 2009

Molly,

I am glad you came back. Your post was obviously well thought out and sincere. I agree with you about fear being the basis of anger. I think that translates very clearly to most of us as we read. I also wonder if the anger is also trying to bolster a decision that one is really not sure about after all. (oh oh)

It just makes me so sad to hear about all the financial issues that my American sisters have to deal with. I cannot imagine the extra stress that it must put on you. Taking money out of a retirement fund or selling a home to be able to get medical tx is JUST WRONG!!

Cost of Cancer

Comments

Categories