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does anyone know...?

LaCh
Posts: 557
Joined: Dec 2012

Hope everyone is well and good, and that the new year brings all good things.

Does anyone know what the statistics are for tumor recurrance of a sucessfully treated T1 (no mets) anal squamous cell carcinoma?  I don't mean five years out, I mean, like one. 

Thanks.

OMG 1012
Posts: 61
Joined: Dec 2012

I have been searching for this and cannot find ANY info on recurrance NOT met occurance but to the area originally treated NOTHING found :( I completed tretment 1-10-13

mp327's picture
mp327
Posts: 4147
Joined: Jan 2010

I'm sorry I can't provide any info regarding your question.  I hope you are doing well and I wish you all the best in the New Year!

LaCh
Posts: 557
Joined: Dec 2012

thanks mp and for you as well.

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Alexandra
Posts: 1311
Joined: Jul 2012
LaCh
Posts: 557
Joined: Dec 2012

thanks alexandra.

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z
Posts: 1411
Joined: May 2009

Hello, I had asked my dr about reoccurance.  I was T2 and he said it won't come back in the same place.  I took that as the exact same place.  Maybe other areas around it.  Not really sure.  Lori

LaCh
Posts: 557
Joined: Dec 2012

well, that's an odd answer unless you asked him, specifically, if the tumor would recur in the same place.  If the question is "can this cancer recur?" which is what people mean when they ask about recurrance--I mean, what's the difference if it recurrs 2 centimeters to the left of the original site or at the original site?--then it seems like a typical and deliberately obfuscating response. No insult intended, but it's pretty much what I expect from a physician. There's a presumption of stupidity of their patients, rather than the opposite. To me, if someone asks "Does this cancer with this grade recur? the answer is "yes," or the answer is "no." If someone asks "What do the statistics reflect?" that's a numerical answer. The reason that I don't like doctors and doctors don't like me, is because if I asked that question and got that response, I would have said, "Yes. But that's not what I asked you. I didn't ask about site of recurrance. I asked about recurrance, yes it happens or no it doesn't, and if it does, how often?"  You can see why doctors and I don't get on very well. Oh well.  I'm continuing with my plans, packing my bags, my dog, and moving to the Moon.  Thanks z... I dunno if the resonse that you got from your doctor was troubling or annoying, irritating or insulting or confusing to you, but I do thank you for passing it along to me.  I'm sure that the stats are out there somewhere. I'll stumble across them sooner or later. Or not. Anyway, thanks for taking the time to post a response.

Marynb
Posts: 1122
Joined: Aug 2012

This may be what you are looking for. The statistics for this and all cancers are collected and disseminated under the Surveillance, Epidimiology, and End Results Program. (SEER)

http://seer.cancer.gov/statfacts/html

LaCh
Posts: 557
Joined: Dec 2012

¡Marynb!

Thank you! Yes, this is what I was looking for!

Thank you!

Marynb
Posts: 1122
Joined: Aug 2012

I hope you are well. Looking at those numbers are very sobering for me. I understand why you would want to see them. I also understand why you would want to pack your bags, grab your dog, and head to the moon! My goal is to beat the odds!!!!!!!!! Hope you have a healthy 2014!

LaCh
Posts: 557
Joined: Dec 2012

My desire to abandon earth has nothing to do with cancer and everything to do with doctors. And western medicine. And our health care "system," which is really just a health insurance system. My take on cancer is--and please, no pissed off responses, this is my opinion from my point of view--my take is that we all die of something. I don't find the numbers sobering or encouraging. I just wanted to know what they are.  Everybody dies. That's a fact.  I can live with that. (Irony intended). 

Marynb
Posts: 1122
Joined: Aug 2012

Yes, we will all die. I understand what your feelings.

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RoseC
Posts: 558
Joined: Jun 2011

Hi - You ok? How're you doing?

Marynb
Posts: 1122
Joined: Aug 2012

I have several appointments this month, scopes, scans. I am praying I am ok. Thanks for asking how are you? I heard you got a lot of snow up there last week. Down by the coast we only got about 9 inches.

LaCh
Posts: 557
Joined: Dec 2012

and now the icing on the cake. Not unexpected, in fact, long awaited, since my radio oncologist's billing people, working at peak efficiency, are a year behind ....  Just got the first half of my portion of the bill, my co-pays in other words. Because of my out-of-pocket annual caps and my failure to think to delay treatments by a few weeks, I had 6 weeks of treatments that straddled two years (Dec 2012/Jan 2013) and two annual out-of-pocket caps rather than one for this treatment... what it all comes down to is that I owe $8,000. This is almost laughable.  If it were $800 I couldn't pay. Eight thousand might as well be eight million. In any case, I'm applying for Chapter 7 bankrupcty.  I'll spare you all my usual tirade against the U.S. and our health care machine, a source of ridicule and puzzlement to Europeans. Suffice it to say that the next ten years (following approval of Chapter 7 bankruptcy, for which I'll start filing tomorrow) ought to be interesting. Way, way more challenging and life-re-arranging than cancer was. The irony is that aside from this, I don't have a penny of debt. None. No credit card debt, no loans, no nothing. I'm diligently responsible with my money.  It also means that for the ten years that the bankruptcy is in effect (it used to be 7 but now it's 10) any bills I incur have no safety net, no back-up resource; once you file for bankrupcy, you can't file again during those 10 years, so that means no in-patient or out-patient diagnostics, treatments, or therapies that carry co-pays that I can't pay. What an adventure, and I don't mean the cancer; That was the least of it. I don't even think about that any more. This'll be with me for the next 10 years... Oh well.... Nothing to do, but do it.

Phoebesnow
Posts: 563
Joined: Apr 2011

There are a few avenues to explore before you throw in the towel.

You can appeal to the drs who treated you to dropTThe charges.  When you claim bankruptcy they will not be getting paid anyway.

You can also appeal to the facility that treated you.  They often have low income programs that will take care of it for you.

 

You can dispute the bill and put it in limbo.

 

You can just not pay and after seven years it will go away and you will not have the permanent mark that bankruptcy does.

 

I am offering suggestions not looking for a tirade.

LaCh
Posts: 557
Joined: Dec 2012

Tirade for offering suggestions? I've never done that, nor directed my tirades against anyone on this forum, but rather towards outside agencies, organizations, systems, governments and individuals ,but never toward anyone here. No. I offer you no tirade but rather, my thanks. For sure, those are things that I've thought of myself, and will do them before I file for Chapter 7. It's a for-profit facility so I don't hope for much, but you never know, and that's why it pays to ask, which I planned to do anyway. One option, though, I think is ill advised. Just ignoring it means that the debt will be sold to a collection agency and that never ends until my life ends. One collection agency will press you, then when they fail to squeeze the funds out of you (which you can't give because you don't have them to give), they'll sell it to another, and so on and so forth, but they'll call and write in a most abusive and aggressive way for 7 years or 70, whatever suits them, each one in turn as it's sold and acquired. So that's one option I wouldn't take, that of just ignoring it because it'll bring a world of misery down on me. I could deal with the cancer but this is very aggravating, maybe because I see the cancer as a proliferation of cell division run amok, but I see my financial mess caused by people. By policies. By greed and indifference and awarness of the fallout that their choices create, and then to try to crawl out from beneath the weight of all those things pressing down upon you is difficult and complicated. I resent having to battle for my financial life, through no fault of my own, not from irresponsibility nor negect nor careless spending nor any thing that I did or didn't do "right." Yeah. I resent that.  But at the end of the day, whatever my feelings on the matter, I still have a problem to deal with, and so I will, in whatever form that takes. Hopefully, the solution won't pursue me to the grave, since the cancer seems to have left me alone.

mxperry220
Posts: 475
Joined: Mar 2011

I like you was treated across 2 calendar years. (2008-2009) and had to pay two annual deductibles/out of pocket rather than one.  If you amortize  the $8,000 over ten years you will be paying $800 per year or $67 per month for 10 years while perserving your credit.  This could save you the hassle and expense of filing for bankruptcy.  Just a thought.

Mike

Marynb
Posts: 1122
Joined: Aug 2012

I was also treated over 2 calendar years, with diagnosis in November and treatments through June. ( I had 2 cancers, one after the other). My costs out of pocket were 30k! Yes, that's right, 30k. I had a lousey health insurance plan. I paid it.
I really don't think you should file for bankruptcy unless you are trying to protect other assets. Your best option is probably to work out a payment plan with the hospital. It sounds like you may be eligible for Medicaid? I hope yu have explored your options for health care coverage on the Obamacare exchanges. We all would agree that getting cancer is unfair and that the health care system needs more reform. It stinks. I can tell you that I personally met many people from all over the world who were in the USA seeking treatment for rare cancers.
I am also wondering whether your family and friends could help you out with the 8k? People are usually happy to help, if you ask them. I hope you think about that.
Try not to worry too much about the bills, I am pretty sure you can work out a payment plan with the hospital. I hope you give it a try.

pamela_preib's picture
pamela_preib
Posts: 55
Joined: Nov 2012

Same here. Started in Dec. 8k in deductibles. Obama helped me. I'm switching plans as of Feb 1st and will have a $1,000 deductible at half the cost. I was paying $2,200 for a family of three per month.

Marynb
Posts: 1122
Joined: Aug 2012

Gee, the rates sure do vary by state! Obama made insurance MORE EXPENSIVE and with a higher deductible for me!!!!! I pay 775/month with high deductible!! NOT good at all. New England states are generallt very expensive! I wonder why?

pamela_preib's picture
pamela_preib
Posts: 55
Joined: Nov 2012

I was with reference but am switching to select health to get the savings.

pamela_preib's picture
pamela_preib
Posts: 55
Joined: Nov 2012

I mean Regence. Auto correct on my Kindle got me.

LaCh
Posts: 557
Joined: Dec 2012

I don't think that getting cancer is unfair. We don't all agree that it is. My opinion is that cancer is neither fair nor unfair. Life is neither fair or unfair. Tumors happen. Things happen. Life happens. I don't attribute fairness or unfairness to any of it. The tumor that I had was the result of cell division run amok. That's all. My economic situation, on the other hand, is unfair; it's the result of people, of policies, of choices made by those in a position to make those decisions, in full awareness of the consequences for people with no say in the matter, of greed and of a system that exists to serve the share-holders of the insurance companies, not you or me. It's run and owned by rich, powerful people who strive to maintain the status quo. A for-profit system--what we have--cannot deliver health care fairly or equitably or affordably. There are only so many ways to turn a profit. Obama didn't revise the health care system; he revised the health insurance system. He cast a wide net that will cover many people, people who will have co-pays that will either prevent them from seeking expensive treatments, or if they do seek them, leave them unable to pay, whereupon they'll be sent to collection, and the account will be sold from one collection agency to the next for the rest of that person's life, or the person will file for Chapter 7, like me. Our for-profit system and good, equitable, affordable health care are mutually exclusive. No one is going to help me, and that's ok, this is my problem to solve and I don't look to others, there are no others, but that's neither fair nor unfair either. It simply is. In any case, I wouldn't say that I'm worried, no, not at all. Pissed? Yeah, I'm pretty pissed, but worried, no. This will be resolved sooner or later, in one way or the other.  I'm not going to get bent out of shape over it; it isn't worth it.  The system sucks, and I can rail against it or not.  I decided not to. It's like banging your head into a brick wall. The wall's going to win. Every time. So don't take it on.

Marynb
Posts: 1122
Joined: Aug 2012

Yes, I totally agree with you about the need for reform? Obamacare is NOT the answer and I don't think it will last long at all. We need to go to a single payer universal health care system and move away from employer based coverage. We must fix this system!

I was at the hospital today and I noticed that there were many pamphlets dealing with assistance for medical bills, some dealt specifically with cancer patients.

LaChance, I hope you start by negotiating with the hospital directly. I sm pretty certain that would be more beneficial to you than Chapter 7. Good luck!

LaCh
Posts: 557
Joined: Dec 2012

Hey Marynb

I think that somehow my forum name has morphed from Lach to Lachance. Not sure how that came about, but after scratching my head over who Lachance might be, I realized that it might be me. In any case, my insurance has paid tens, if not hundreds of thousands of dollars towards the radiotherapy I received. I'm basically going to throw myself at the mercy of the court (so to speak--I mean the provider) and ask them to simply discharge the debt. If they've received close to $100,000 already, surely they can discharge $8,000 without a negative effect on their coffers. It's the same thing as having $100 in my pocket and not missing $8. Anyway, thanks for the input and interest.  The aftermath of the cancer (for me) has been 1,000 times worse than the cancer itself. That's done and over. This is a pain in the *** of another kind, that might not be over so quickly, or end so well. Time will tell.  As for Obamacare... if the consequences weren't so awful for so many, the entire thing would be laughable. I think that one of the unforseen consequences will be an increase on Chapter 7 filings by many more people. Currently, medical bills are responsible for the majority of Chapter 7 filings in the U.S. I can't imagine that it'll go down with Obamacare, but up, as more people with insurance find themselves in my situaiton. Single payer, yes, that would have been a meaningful step in the right  direction. I hate to keep introducing European health care models, but they work better than ours, (as does Canada's and Mexico's) with better results for more people, and care that's on par with ours. I'm not saying that they're perfect or problem free, but the net result far surpasses what we have. They pay the government and never see a bill, never get kicked out of the hospital before they're ready (or check themselves out before they should, like I did when I had my appendix out, simply because I knew that every day I sat in the bed post-op I racked up another $175). I don't expect to see anything like a single-payer system implemented in this country in my lifetime, which is why I sometimes wonder if moving to Spain might be something I should consider more seriously. As a legal immigrant, I'd pay into their system and get the same care. And no surprises in the form of bills that I can't pay. You've been very kind to me, Marynb, and I greatly appreciate it.

mp327's picture
mp327
Posts: 4147
Joined: Jan 2010

I sympathize with your situation and I hope you can get the hospital to forgive the remainder of the owed amount.  It is a drop in the bucket to them.

LaCh
Posts: 557
Joined: Dec 2012

thanks mp. I'm waiting on the EOBs that I requested from my health insurer for the dates covered, so that I can at least sound semi-intelligent when I discuss (in writing) this with the billing office to plead my case. I'm better in writing (and documentation is always a good idea) so I'll write first and call second, and then, only of I have to. There's nothing to lose by trying. In any case, I decided not to go off the deep end over it. In the end, I mean, really, what's the difference? Get it discharged or go into personal bankruptcy; it'll work out any way that it gets resolved, since I have no assets to lose.  Qué será, será. That's my attitude. My new attitude. Anyway...thanks.

Marynb
Posts: 1122
Joined: Aug 2012

Oops, sorry about the name morp! I think approaching the provider is the way for you to go! Hopefully, they can forgive that small amount and you lighten things up for you! I find that people are quite merciful if you ask them to be. Fingers crossed!

LaCh
Posts: 557
Joined: Dec 2012

No problem. Lachance sounds like a good pen name or something.  Finally spoke to a lawyer and got some good, solid info. Hey, while I have you on the line, so to speak, you ever get a raw, sore butt (on the outside) sort of out of the blue, either with or without blood? Makes "hygiene" slightly painful.... ever happen to you? It's a new one for me, not worrisome, just odd. 

Phoebesnow
Posts: 563
Joined: Apr 2011

This has happened to me a lot.  I use charmin ultra soft, dabbing not wiping seems to be key.

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mp327
Posts: 4147
Joined: Jan 2010

Radiation not only thins the skin on the inside (the lining of the intestines), but it can also thin the skin on the outside.  It becomes very friable and easily irritated, especially with frequent wiping.  If you are using regular toilet paper, you might want to switch to a pre-moistened wipe that contains no alcohol and see if that helps.  If you don't want to go to those lengths, I have found that dipping a wad of toilet paper in water before wiping can help.  It is soothing and it makes cleaning easier with less wiping.  Also, applying something such as Desitin to the area may help.

LaCh
Posts: 557
Joined: Dec 2012

been using pampers baby wipes exclusively for the last year. anyway, I also have bleeding from inside, so gonna have a flex sig on monday, gastroenterologist talked me into it, I expect that it'll reveal nothing more than radiation proctitis or a 'roid, nothing to do for the first, get a zap if it's the second. this all falls under the umbrella of "tumor gone, 20 more problems in exchange." bleeding butt, no gut motility to speak of, digestion at full stop and tissue and anatomy changes that no one would want, and one has to wonder  ... (or I wonder)... was it really worth it?

mp327's picture
mp327
Posts: 4147
Joined: Jan 2010

Post-treatment problems can seem like a deal-breaker, but I still think the alternative would be worse.  But we are all entitled to our thoughts on this subject.

LaCh
Posts: 557
Joined: Dec 2012

But we are all entitled to our thoughts on this subject.

Indeed.

Marynb
Posts: 1122
Joined: Aug 2012

Hi Martha, i was told not to use Desitin because of the chemicals. They don't use it on babies anymore either.

mp327's picture
mp327
Posts: 4147
Joined: Jan 2010

I don't know the chemical composition of Desitin, but I'm sure it has contained zinc oxide.  Supposedly, Johnson & Johnson made a pledge (no pun intended) to remove the toxic chemicals from such products that they manufacture by the end of 2013.  Now, as to whether or not they have actually done this, I don't know.  Thanks for the heads up.

LaCh
Posts: 557
Joined: Dec 2012

I use something called Ozonol. It isn't available in the United States, but is produced and sold in Canada. I get it from people I know in Canada; they bring it down when they visit NY; I don't know if it's available on the Internet, but it's just an over-the-counter ointment, so it might be. It contains zinc oxide and .18% phenol, which is derived from petroleum, something some people feel isn't risk-free, but nothing is risk free. Breathing isn't risk-free. Applied topically, it'll cure almost anything, seemingly. The reality of industrialized life is that you're always going to get something you don't want, mixed in with something that you do, if you buy that "thing" commercially. With care and forethought in what you select and use, my guess is that one can minimize the risks, and that once that's been accomplished, the undesirable parts won't kill you.  That's my guess. But an industrialized world carries health risks. One can take steps to mitigate exposure to things deemed hazardous, (and that bar is often set differently by government and consumers) and after one has done that, the only real healthy attitude is to use the product that seems best in results and lowest in risk (not absent of risk, because you're probably not going to find it, but lowest in risk) and don't worry about the hazards.  I mean... we're smearing goop on our butt holes. Is that going to kill anyone?

Marynb
Posts: 1122
Joined: Aug 2012

Hi. I am glad you spoke to a NY attorney. Yes, I do get a sore bum quite often. I have wondered what chemicals are in toilet paper that we are using so frequently. I have a feeling I should be using toilet paper that is not bleached and treated with chemicals.

LaCh
Posts: 557
Joined: Dec 2012

this wasn't unexpected. I've been waiting for this bill for a year, since the billing dept is a year behind (talk about efficient). In any case, I don't want to move to Spain; if I did, I would have done it by now. But it wasn't lost on me that my dollar would go further there, and I'd pay into a socialized medical system in which I'd never see a bill, not for diagnostics, nor treatment, nor therapy, nor anything. It's not a perfect system; no system is a perfect system, although Finland's comes pretty close. But Spain's is light years ahead of ours, and light years better for me. So while I don't really want to move to Spain, I feel like this issue is one more little nudge in that direction. I know several people there who've had various cancers, and their care is/was on par with mine.

ppaseka's picture
ppaseka
Posts: 70
Joined: Oct 2011

My wife's cancer was discovered in Oct of 2011. With the  CT, PET CT Surgery etc we meet the out of pockets expenses of 10k.  We started chemo and radiation on the 26 of Dec. 2011. By Jan 30, we meet the max out of pocket for another 10k. That sucked.

LaCh
Posts: 557
Joined: Dec 2012

It absolutely does suck. It's very similar to what happened to me. Had I known then what I know now, I would have waited three weeks... three short weeks and rather than an $8,000 co-pay I would have had a $4,000. Then again, $4,000 is the same as $8,000 to me. Both are so far beyond my reach to pay that the difference between the two doesn't even matter.  These scenarios will play out over and over, to more and more people as long as we have for-profit health care, pharmaceutical and hospital systems. I love capitalism as much as anyone, but health care and profit don't serve anyone except those working for that profit. In this case, the objective to make a profit--the only reason the insurance companies exist-- is not in the best interests of the consumer.  Consumer (patient) interests and the medical insurance companies' interests are mutually incompatable and always will be, and no amount of tweaking (as in Obamacare) will change that. I hate to keep refering to Europe, because their systems aren't free of problems either, but they're different problems than ours, and because literally every person pays into the system on a mandatory basis, everyone receives diagnostics, treatment, therapy and surgery when needed, without receiving bills for any of it; they've all already paid into the system and that's how they can do it that way. If you get sick or injured, you focus on your health, not your money. You don't get kicked out of a hospital before you're ready. You don't lie on an ER gurney, asking the surgeon if he accepts your insurance because he's just told you that you need your appendix removed. These are shameful, egregious scenarios that play out in this country every day (the last one happened to me). So, I feel for you ppaseka, just as I feel for everyone in this country who faces this health vs money dilema. You're right. It sucks.

mxperry220
Posts: 475
Joined: Mar 2011

The link you provided was very informative.  It is the best I have seen thusfar.

Mike

Clovergirl
Posts: 48
Joined: Dec 2012

I don't know where my RAD ONC stats are from, but he told me reoccurrence is most common within the first two years.  I didn't ask him that question.  He just told me that.  I see him again at the end of this month for my 9 month check. 

Marynb
Posts: 1122
Joined: Aug 2012

Yes, that is true...most recurrances occur within the first two years. After 2 years it is less likely to recur. Good luck at your 9 month check! Stay well.

mxperry220
Posts: 475
Joined: Mar 2011

January 14 2014 I will be 5 years post treatment.  My colorectal surgeon said the the 2 year mark was the general guideline used for anal cancer recurrence.

Mike

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