<p>I think the rehashing also comes when people act so poorly that we just can’t believe it. We go over it and over it to prove it’s real, and I think also, somewhere in side of us, hoping for a different conclusion. Post-traumatic stress of a sort.</p>
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<p>My father in law recently passed away from malignant melanoma. When he was diagnosed with stage 4 he did not give in. He fought with everything he had. He was willing to try anything and everything, and he did. Unfortunately, as you know, they really don’t have any great treatment options once it has progressed to such a late stage. Many family members read about different trials. 2 designated family members (we did not want to drive his doctors nuts) emailed his doctor with information, and the main treating doctor (basically a manager bc my FIL had several doctors) emailed our family with updates as well (my FIL gave permission of course). His doctor let us know what he felt was worthwhile trying and what was not and why. He let us know if he felt my FIL was going to qualify for a trial or not. My FIL did not read about his disease, or treatments. He left that to his doctors and to his family. We believe that his having fought did add some months to his life. Those months, and each day of those months, did matter a lot to our family.</p>
<p>You know, LTS I am reminded of those wee baby days when an exhausted new mom can lie in bed rigidly waiting for a baby to wake at an expected time, because the baby <em>always</em> wakes at 2:00am and she’s just certian he’ll wake any second now…</p>
<p>My grandmother had very good advice for me on this. She said, hey SLEEP!! If your baby wakes up and wants you, he’ll let you know and THEN you can get up and deal with it.</p>
<p>I imagine that the analogous position right now is Hey, FIGHT! LIVE! If there’s reason to accept defeat at some future point, you will know it, and you can change course then.</p>
<p>I wonder if the bad odds with your cancer make it just as hard for the doctors as for the patients to summon a fighting spirit and a belief in the possibility of cure? I bet he’s gone through dashed hopes many times, and I’m not surprised in defeatist (or as he may see it, “rational”) thinking. I am sure it burns a guy out over time and makes “acceptance” of statistics a refuge.</p>
<p>I am so glad the other doctor agrees that you need a more aggressive fighting spirit.</p>
<p>The last thing you should worry about at this point is being too pie in the sky in your thinking. You are VERY clear eyed and VERY factual. If and when the facts give you no wiggle room, I have complete confidence that you can/will face those facts. It seems premature at this point though. You are not even getting accurate answers from this guy! He’s not even countering fact with fact! You deserve better.</p>
<p>LTS, you are not a standard patient and you need more than the standard care, and more than the standard doctor. The treatment you received today is appalling. Time to move on (but you are wise to keep a door open in case you don’t find anything else this week).</p>
<p>I like JEM’s suggestion - can you get in to see someone at Johns Hopkins or MSK right away? It’s awful that you have so little time to make decisions, but you have gathered so much information that you are in a position to do so.</p>
<p>You are not in denial. You have been staring this thing in the face since day 1, and you have always been completely realistic. Your chances are not zero, and you have every reason to keep fighting.</p>
<p>LTS - trust your instincts. Trust your instincts. I remember when my daughter was a baby and I would cry and cry over her perfection and the certainty that I would ruin her with my flaws. One day it dawned on me that I could only be as good of a parent as I was a person. Then I just cried about how tired I was:).</p>
<p>You are who you are. You can only be the the kind of patient that you are as a person. If you want to fight, if you feel like fighting, fight. It is your life. You get to decide. At every moment you get to decide.</p>
<p>Just be sure you are aware of what it takes to fight, and try to keep your own resource level as high as you can.</p>
<p>If you ever feel in your heart the time comes not to fight, even in the first light of morning, well, then, you still get to decide.</p>
<p>So sorry to hear the outcome of your meeting today. Doctors do get an injection fee, and in cancer practice that become susbtantial. Hope you make headway with MSk and JHS on their trials. Oncs there at comprehensive Cancer Centers will be more aggressive in treatment but that is not to say that they will have good bedside manners either. Perhaps third time is the charm.</p>
<p>Best wishes and keep well, Padad</p>
<p>Run, Late to School, run! </p>
<p>Run away from the complacent, the do-it-by-the-book, the you-are-just-another-statistic medical establishment. Run until you find the team that will partner with your stubborn self!!! Who cares if you are in “denial?” What is denial, in this instance, except the refusal to accept someone else’s perception of your reality?</p>
<p>Trust yourself. You know what you need right now. And you will know what you need next. If that happens to be an acceptance of an unsought inevitability, you will know that, too.</p>
<p>Right now: run! That is your instinct, so it is right.</p>
<p>“What is denial, in this instance, except the refusal to accept someone else’s perception of your reality?”</p>
<p>I love this, mafool.</p>
<p>Take your denial, LTS, and you go, girl!!</p>
<p>LTS:</p>
<p>I am sorry you had such a negative consultation. You are not in denial. You have every right and every reason to fight, to be positive, and to act on the basis that you are going to live and not die. You do need to find another doctor who has the same positive outlook, who is going to do everything s/he can to keep you alive instead of helping you “accept your fate.” So I hope that your doctor locates one soon. And good riddance to the peddler of negativity. Keep up your (fighting) spirits!</p>
<p>You deserve better than this, lts. No judgment on the MD, but not the right one for you. Keep searching as mythmom says. I think there is a verse in the Bible, something like “Arise and go, for this is no place to rest.”</p>
<p>I think you approached this moment today with your research and your research/awareness of trials going on brilliantly. Seeking profoundly important options to palliative care isn’t crazy or rude or a ramble meant to waste someone else’s time…you weren’t talking to this doc about Amway for heavens sakes! </p>
<p>You are not among the meek of the world and you are a person who pursues knowledge and takes action. I am sure that even though you are a highly productive woman, you have had many moments in your life when you stopped what you were “doing” to simply recognize that someone else was in a crucial place and required your attention and thought and insight. I am sorry this doctor could not step back to give weight to your leads today. Even if he was pretty sure he was going to tell you palliative care is his care plan, he should have stopped and asked to review all of your documents and then asked to see you later after he had digested the terrific leads you gave him. He should have discussed your leads with his colleagues to get their perspectives. Calls should have been made.<br>
Your readers here know you are also an accomplished person but you would have stopped your busy life and immediately set about evaluating treatment leads presented to you in earnest by an intelligent friend whose life was at stake. </p>
<p>If you do have any further contact with this doc, perhaps you might specifically come up with two or three things you “would have liked him to do.” I think a guy like this can’t think in specifics so he gets defensive and all global on you and balks. Tell him what you were expecting from him in response…ie…I expected you to take my research
leads and make some calls. I expected you to share my leads in a patient care conference with colleagues to get some other feedback. I expected you to tell me what you know… I expected you to refer me…I expected to see you again tomorrow after you had done some follow up…
You deserve the most serious attention and consideration.</p>
<p>LTS, I’m another person who checks in often and silently wishes you well, and is in awe of your energy, creativity, and stamina. </p>
<p>I feel that you were so badly treated by that doctor. What I don’t understand is, why won’t he just agree to assist you in getting into some of these trials? What does he have to lose? (If as padad suggests it is economic, that is horrible that would be a factor in that doctor’s recommendations.)</p>
<p>I am in a different profession, but also one where I deal with people under stress. Sometimes I disagree with people’s thoughts about the best way to achieve what they want, but I always remind myself that it is their life, not mine, that we are talking about and they are the boss, not me. (The only exceptions that I can think of are if they want to do something unethical, or something that would demand that I take a personal risk that would affect me or my family). </p>
<p>I don’t see why a doctor would deny you the right to obtain the treatment you want to try. I agree with you and others that you absolutely have the right to be treated by someone who supports your own right to select your treatment (to the extent it is available). He could at least have said, “I don’t have time to finish this conversation right now; let’s talk again tomorrow at X a.m.” That would also give him time to review anything you could have given him and rethink his own stubbornness, or whatever it is.</p>
<p>I don’t mean any disrespect to doctors, because there are so many incredibly amazing ones out there (I am thinking of all the people who have helped me through infertility, my dad through heart problems, etc.) but sometimes they really do think they are the only ones with the right answer and that just isn’t always true. </p>
<p>You are not in denial, you are just seeking the best options for you. Keep doing it, you have our support and our care!</p>
<p>latetoschool, I’m very sorry to hear about your ordeal. If cancer were a “standard” disease, it would have been defeated by now. Unfortunately, it is not. What works well for one patient may not work as well for another. I hope you have a much better luck with your new doctor. Please do not give up the hope that kept you going, and just like that little mouse who churned cream into butter, you will win.</p>
<p>LTS, you need a doctor open to out of the box thinking. A simpler way of finding one is to look at those doctors who are sponsors of the trials. Even if their particular trial isn’t for you, they are usually open to other trials. And because of their work on experimental trials they are prominent at the conferences, and hear more ideas from other doctors. Johns Hopkins might be a good place to looks. The downside of these hospital/clinics, and especially the doctors who are active on trials, is the doctors often get their information at conferences, so they might be harder to get into see. But they love patients will to be aggressive with them. (I know my situation isn’t working out well, but I can’t blame it on our doctors not knowing every possible option. )</p>
<p>LTS- Your instincts are one of your greatest strengths, many doctors feel “put off” by patients with such extensive knowledge, quite honestly you appear to have been more up to date on things then he was. While it is unfortunate he did not take your lead and check out this info and your qualifying, you know where you stand with him. So on to the next!</p>
<p>UCD is very correct, look to the trial doctors, as someone with a chronic illness I can tell you this your best line of fight. They are out of the box in their thinking, and you want to be treated out of the box! </p>
<p>Keep Going. Feel strong today.
4Giggles</p>
<p>4Giggles may have the right take on the matter. Doctor feels he has all the answers and is threatened by your knowledge. What an inconvenient patient you are! ;)</p>
<p>I can’t imagine a doctor discouraging a patient from looking for trials, when he can only offer the “standard” of “palliative” care. What do you have to lose? </p>
<p>Good Luck! {{{{{{{{virtual hug}}}}}}}</p>
<p>lts: Don’t cede an inch of what makes you you. It’s your journey. You just need a companion, not some one telling you to come inside.</p>
<p>I’m with 4Giggles: Feel strong today!</p>
<p>I agree with UCD that you need to be at a research center, where the attitudes will be aligned with yours. And you certainly need a doctor who knows at least as much about his specialty than you do!</p>
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<p>Thank you so much for all of the kind messages and posts. Today this matter has me in tears and frustrated beyond belief. I did not sleep well at all last night; tossed and turned trying to figure out ways to solve this problem, but, also, I am very, very angry, too angry to sleep at all. </p>
<p>I’m appalled and horrified that the logic is that an 80-year old bed ridden chain smoker with other illnesses and a 48 year old active, healthy never smoker get the exact same medical care for this diagnosis. Even the original referring doctor’s colleague said yesterday that there are people in their 70’s surviving with this disease.</p>
<p>Still, I have an appointment tomorrow morning with a trial doctor, and am calling more doctors the rest of today, to see what other options there may be. </p>
<p>Meanwhile, I am just simply so very tired of this. I want my life back. I wanted today to be about my work and my clients and the thrill of what I do, and the happiness I used to enjoy. So very frustrated…</p>