<p>That post really hit home. Although breast cancer is not stigmatized as lung cancer is, so many people asked me if I had gotten yearly mammograms. Well, I had since I was 35 years old but somehow went two years before my diagnosis. As you can imagine I was beating myself up over this wondering what would have happened with the mammo. one yr earllier. Every question brought that guilt and doubt back to the front.
And the horror stories!!! I can’t tell you how many people, while I was waiting for results to determine if I needed chemo told me horror stories about friends and relatives who didn’t receive chemo and ended up dead in two years.
Postive words of hope are so important</p>
<p>keymom, about the mammograms and smoking questions: I really think that people are being self absorbed when they ask these questions. They are afraid about also being vulnerable to both lung and breast cancer. I really think that they find it comforting to tell themselves that they won’t get very ill from either disease because they are doing “the right” things to take of themselves by not smoking, and having those regular mammograms. I don’t think that they are thinking about anything other than themselves when they ask those questions. They are simply soothing themselves to feel more secure.</p>
<p>Keymom–my MIL had a mammogram less than six months before she found a lump which turned out to be malignant. Please don’t beat up on yourself!</p>
<p>I had a bone cancer–chondrosarcoma–that is sufficiently rare that causes are not really an issue (with only 800 cases/year in the US, there’s very little research). In my case, people want to know “how did you find out?” When I tell them “knee pain,” you can hear alarm bells going off.</p>
<p>What people really want to know is: is this an experience I can learn from? What should I learn? Should I learn to get a mammogram? Listen to pain? Stop smoking? </p>
<p>People reading this thread are learning to advocate for ourselves; we are learning to question authority. We are learning. That’s why we read these comments. I don’t think it’s fear of cancer: I think it’s fear of not learning from someone else’s experience.</p>
<p>Just reading posts for two days because I had nothing to add. But now I want to say this thread is morphing into something amazing.</p>
<p>LTS: Here is your army to change the system, many voices strong already.</p>
<p>My SIL had a “clean” mammogram when she already had stage 2B breast cancer. The fact that the lump could be felt led to an ultrasound and biopsy. Mammograms are not foolproof.</p>
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<p>I agree with this. </p>
<p>Many (most?) of us, I believe - even if otherwise sophisticated - live our day-to-day lives wrapped in a snug security blanket: the belief (which may never be consciously articulated) that we will never die. </p>
<p>Evidence of serious illness, such as cancer, threatens to strip that blanket off of us. But we can keep it snugly wrapped around ourselves so long as we can believe that the person who has become ill is somehow responsible for her fate - in ways that we never would be. This provides a way of keeping that person at a distance - a way of defining her as an “other” (rather than as a reflection of ourselves). </p>
<p>If we believed that we, too, could wake up one morning, feeling no worse than we had on any other morning, only to discover later that same day that we had a life-threatening illness, well, then where would we be?</p>
<p>The next question that people ask (after the did you smoke or did you get mamograms) is “Does cancer run in your family?”. Any of these lessen the perceived risk the questioner faces.</p>
<p>The differentiation continues after diagnosis. For example, I can honestly tell myself - and I frequently do - that the 95% of people who do not survive this diagnosis tend to be far older, smoke cigarettes, don’t have as strong as support systems, have other health problems, have financial problems, don’t have strong mental stamina, aren’t able to be as aggressive about their care, etc. </p>
<p>Yesterday I had more chemotherapy, and the MRI for overlay to the CT scan for staging. Lots of apologies came in re the matter of the whole brain radiation, but, I still await explanation as to how and why the matter happened in the first place. </p>
<p>The head of radiation oncology called me to apologize, said the financial people were trying to “help” and, I simply said to her, um, no, they weren’t; they didn’t even know why they were summoned to the room, didn’t even want to be there and they had zero interest, there is absolutely nothing wrong with my coverage or account standing or any other business matter; and in any case the financial people could not have had access to the system to change the treatment plan; so, why do you continue to lie about this, and pretend that this is something the financial people dreamed up when clearly this is a matter you manufactured?</p>
<p>She just keeps evading me every time I ask the question “why did you lie/why do you continue to lie about this”? She responds instead with apologies, and with reassurances that I am being staged for cyberknife. I told her I am not interested in her apologies. I am interested in answers, and for the lies to stop. I still have no answer as to why she did this. Hopefully we drill further down to it today. </p>
<p>What’s really, really scary about this is that - if it weren’t for the slightest slip on the part of one of the nurses, I would NOT have caught on that I was being staged for whole brain radiation. Not being in the medical field, I have no ability to recognize the difference in the staging procedures.</p>
<p>Calmom, I did take a lawyer with me yesterday, but, he was merely a friend/moral support. He’s a policy wonk and I doubt he has seen a courtroom in years, if ever. But in his dreams he imagines he’s a litigator. It’s cute. 
He’d love to get his hands in this…</p>
<p>Hey, LTS, the hospital doesn’t have to know what kind of law your friend practices! Just say, “Wait a sec, I want my lawyer friend to hear this” and call him in!</p>
<p>LTS–the admin won’t say anything because she knows they are open to a lawsuit. You were about to be given a procedure you had not consented to. Plus, if the decision was made by a non-MD, that is practicing medicine without a license. She sees her best bet is to just keep apologizing, rather than explain the truth in case you use it against her. Her mistake is not getting who you are, and what is important to you. She’d be far better off, I believe, telling you the truth, but she’s on “evasion” mindset, and can’t get off it.</p>
<p>I have been reading, dumbfounded, for the past couple of days.</p>
<p>I am wondering, LTS, if that nurse, after speaking with you and knowing your expectations, didn’t ‘slip’ intentionally.
I think that nurse really didn’t know what prompted the decision to change the treatment plan, and answered that part honestly. She did know her boss told her to write the changed plan, and she answered that part honestly, as well.</p>
<p>mominva, wouldn’t it be nice to think that.</p>
<p>LTS, every time I read this epic, I always say “You go girl!”. I am so amazed with your thought processes and that you are not willing to be beat down by this. I always hear of the caregiver that is the advocate and works on the patients behalf but rarely do I hear of the patient being the advocate. You really are an inspiration.</p>
<p>LTS, I have a friend who, when there is an issue, copies her letters to insurance companies to a friend who is a lawyer. She swears this gets terrific results.</p>
<p>LTS, I think you might enjoy the new PSA that appears on Randy Pausch’s website [Randy</a> Pausch’s Home Page](<a href=“http://download.srv.cs.cmu.edu/~pausch/]Randy”>Randy Pausch's Home Page). I think you both have similar outlooks on this horrid disease called cancer.</p>
<p>What scares me is that I doubt that this would be a one-time incident. More likely there are administrators at that hospital cutting corners on a routine basis. “Changing” treatment plans based on the money – perhaps because of experience with particular insurance companies or their payment protocols. They probably have a good sense of what they can routinely get away with. And, sad to say, they probably also feel that they can get away with a LOT for patients with dire-level diagnoses… I mean, there is a rationale afoot, “this patient is going to die anyway, we might as well save money, no one will blame us”.</p>
<p>LTS – I’m sorry to be falling into my overly blunt & sometimes offensive way of phrasing things – but that is the sense I get. That oncology head figures no one will ever catch on, and if they realize the mistake, they will be able to say… well, it wouldn’t have made a difference anyway. (The defense that just proved successful in the John Ritter lawsuit: well, they misdiagnosed the heart attack, but he would have died anyway even if they had done the chest xray that was ordered but never completed, because aortic dissections are so disastrous in general).</p>
<p>All I can say is that you really do need to be hyper-vigilant. I would advise taking a knowledgeable support person with you to the hospital any time a procedure you are not familiar with is planned. The person doesn’t have to be a medical expert, but they have to be the type of person who can be briefed on what is supposed to happen and will ask questions and help you double-check along the way. One more pair of eyes on your side. And you are going to have to get in the habit of repeating & confirming every step of the way what you are there for… “hi, I’m here for the cyber-knife!” “you are prepping me for the cyber-knife, right?” – and maybe even asking to see the specific paperwork every time you are there. </p>
<p>Like you really need this added stress in your life? But that’s the point… it is your life at stake. So keep strong, and keep fighting.</p>
<p>Hope you have a good, restorative weekend, LTS, daughter at hand, friends there to support you, and friends here to carry you in our thoughts and prayers. Hugs. Lorelei</p>
<p>LTS, Have a good weekend. Thoughts and prayers from us.</p>
<p>LTS, I thought of you today…</p>
<p>There was something weird with my EKG when I went to the doctor last week, and she sent me a letter (got it yesterday evening) asked that I come back to get an echocardiogram. I schedule it for this afternoon, come in, and they say, “Oh, we haven’t had a chance to get this approved by your insurance… Don’t put that she’s arrived yet.” A few moments later, I’m called in by the tech, who whisks me back and does the echo immediately. (Must’ve gotten cleared up, so they put that I’m here and waiting, right?) As I’m getting dressed again after the echo, the tech says, “The insurance lady wants to speak with you.”</p>
<p>I walk out, and the insurance lady just looks mortified. She tells me that I owe them five hundred dollars. I’m 26, out of grad school for two years, newly married, supporting myself and my husband, freaked out about this apparent “cardiac abnormality” (and meanwhile, the tech has asked the cardiologist next door in to look at my echo, and I’m hearing snippets of their conversation and I have no idea what they’re talking about but the tech sounds worried, so I’m on HIGH ALERT)… I burst into tears. (Some of us call out the full chain of command and read them the riot act like a total rockstar of poise, but some of us aren’t so lucky…!)</p>
<p>My heart seems to be okay, though they’ll go over things more closely and write up an actual report, and we have some emergency funds stashed for just such an occasion, but it was just completely unnecessary. Like with you, the insurance lady was completely horrified by the whole thing and will be filing a formal complaint on my behalf, and she tried to talk the clinic administrator into waiving part of it, but no go.</p>
<p>I was so mad at myself for not learning the lesson from your story, but I’ve sure learned it now. Double-check the procedure, and whether it’s absolutely essential, and whether it’s appropriate. Get the price up front. Don’t back down.</p>
<p><em>sigh</em>… Thinking about/praying for you, and fully impressed with how much you rock.</p>
<p>aibarr, I am glad that all is well! Don’t be so hard on yourself. I think that you behaved exactly as a typical patient would react. I think that the office/hospital should have told you what you need to do regarding insurance, or they should have done their job from their end. They should have given a price during a consult, not in the middle of your procedure, IMO! I think that it was unprofessional on their part. Look how concerned they were about your heart…not concerned enough not to upset you by trying to zing you with a bill for $500 in the middle of the visit!</p>