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Medical Forum / Diseases and Disorders / Cancer / April 2005THANK YOU
thank you all for your kind words and support. I understand that the radiologist should inform patients fully and i have often questioned the oncology consultants about why this happens. Unfortunatly the reason for this is that they feel sometimes a patient is not stable wnough to be told the facts and that it will only cause them more worry. I myself fell that patients should be told fully about cancer and the risks of secondary cancer but im afraid that sometimes radiologists fell that is better left unsaid kind regards natalie > thank you all for your kind words and support. I understand that the > radiologist should inform patients fully and i have often questioned the [quoted text clipped - 10 lines] > > natalie There's the paradox. Tell patients ALL the risks, even the remote ones, and not only are you heartless bastard, you may dissuade the patient from having something done which is in their best interests. Don't tell them, and you're a patronising bastard. I feel what you said is not fair people have the right to now about the effects but sometimes it is if the person having treatment is not in the right mind to be told that in 20yrs that the cancer will come back (secondary cancer) > > thank you all for your kind words and support. I understand that the > > radiologist should inform patients fully and i have often questioned the [quoted text clipped - 16 lines] > which is in their best interests. > Don't tell them, and you're a patronising bastard. >I feel what you said is not fair people have the right to now about the > effects but sometimes it is if the person having treatment is not in the > right mind to be told that in 20yrs that the cancer will come back > (secondary cancer) But how am I supposed to know if you are the person who wants to know everything or the one who wants to know less than everything? > >I feel what you said is not fair people have the right to now about the > > effects but sometimes it is if the person having treatment is not in the [quoted text clipped - 3 lines] > But how am I supposed to know if you are the person who wants to know > everything or the one who wants to know less than everything? My Onc. in Denver asked me what level I wanted to be involved. I asked for everything.  SignatureEverything should be made as simple as possible, but no simpler. Bob In Carmel, CA > My Onc. in Denver asked me what level I wanted to be involved. I asked for > everything. This is basically what all three (1 civilian, 2 military) of the oncologists that have worked with us have done. Pam S. >> My Onc. in Denver asked me what level I wanted to be involved. I asked >> for everything. > > This is basically what all three (1 civilian, 2 military) of the > oncologists that have worked with us have done. And does any patient ever say "No, please hide stuff from me"? >>>My Onc. in Denver asked me what level I wanted to be involved. I asked >>>for everything. [quoted text clipped - 3 lines] > > And does any patient ever say "No, please hide stuff from me"? no, but then everyone I know would want to know what they're facing. Pam S. >>>>My Onc. in Denver asked me what level I wanted to be involved. I asked >>>>for everything. [quoted text clipped - 7 lines] > > Pam S. So again, I ask, how do I know if you want to know everything. Because I ask every patient that, and they always say "yes" > >>>>My Onc. in Denver asked me what level I wanted to be involved. I asked > >>>>for everything. [quoted text clipped - 10 lines] > So again, I ask, how do I know if you want to know everything. Because I ask > every patient that, and they always say "yes" If we say yes, assume we mean yes and be completely honest. Dorothy ? ? > So again, I ask, how do I know if you want to know everything. Because I ask > every patient that, and they always say "yes" If we didn't want to know everything, we'd tell you so. Please assume that we mean what we say and treat us like the adults we presume we are. However, a really good sense of humor helps. One of Rob's oncologists told him not to start a century long project, or read shakespeare's collected works. When asked why one shouldn't read Shakespeare's collected works, the oncologist replied "because they suck." We love that guy. He's great. Pam S. >> So again, I ask, how do I know if you want to know everything. Because I >> ask every patient that, and they always say "yes" [quoted text clipped - 9 lines] > > Pam S. So when I treat someone with a T2 larynx cancer, with an 80% chance of cure, should I mention the 1 in 1000 chance of a radiation induced cancer 15 years later? Steph, If I were the patient then I would have asked the question (side effects). If you looked at me like I was crazy I'd think about finding another doctor. I like to know of all possible complications beforehand, and make informed treatment decisions. I would spend some time researching alternatives to avoid the radiation. Are we thinking of radiation because it's the only treatment approved by insurance? It is not easy for non-doctors to embrace treatments that you may be used to every day. That's just me. I know plenty of people that can put 100% of the decision in their doctor's hands, (which may be tied by the insurance company - I'm in the US). > Steph, > If I were the patient then I would have asked the question (side [quoted text clipped - 10 lines] > decision in their doctor's hands, (which may be tied by the insurance > company - I'm in the US). I only used radiation as an example. I'm not interested in insurance, because I'm not in the USA. And if there is a 1 in a million chance the radiotherapy machine might electrocute you? Should I tell you (because there probably is) You've seen drug monographs. Should a medical oncologist explain every possible side effect, no matter how rare, of all the four drugs used in ABVD? How long do you have to listen When your GP prescribes an antibiotic for your infected , do you really think he explains to you every recorded side-effect and drug reaction in the literature? Do you really want to know? I'm not trying to be obtuse, I believe patients should be given all the relevant information, otherwise there is no such thin as informed consent. But there are practical limits to what can be achieved, and after a while, additional information about vanishingly rare possibilities is not only a waste of time, but can become counterproductive. I do my very best to give my patients all the information that is relevant, and what I judge to be relevant might be different between a thirty six year old university professor and a 92 year old retired janitor. But nobody can be told everything about any treatment and its complications, and if you think anyone is told absolutely everything, I think you are mistaken. Nobody is trying to hide anything, but there are only 24 hours in a day..... Steph, you can't win:( I'm in a UK group of 30+ patients who get their med on Wednesday fortnights. Most say that they want to know all the details, some don't have the courage to ask and are satified. BUT... 2 in the group wished that they hadn't asked certain questions. Some people would rather not know but can't help asking. For myself, I DO NOT want to be told "Expiry date is 6th Aug 2005." but am OK with "Well, we can't be specific but stats say you've got around 6 to 10 months.". I've overworked Google past couple of years and am quite good at avoiding reading some of the hits ;) I guess you've had enuf experience Steph, to know what to say despite being non-telepathic :c) Alf > I'm not trying to be obtuse, I believe patients should be given all the > relevant information, otherwise there is no such thin as informed consent. [quoted text clipped - 8 lines] > think anyone is told absolutely everything, I think you are mistaken. Nobody > is trying to hide anything, but there are only 24 hours in a day..... We understand that you can't tell us "everything." But the patient and his family should be allowed to know as much information as they want. It is terrifying when a "new" complication crops up and one can only pray that they can handle it. Pam S. Steph wrote... > I do my very best to give my patients all the information that is relevant, > and what I judge to be relevant might be different between a thirty six year > old university professor and a 92 year old retired janitor. But nobody can > be told everything about any treatment and its complications, and if you > think anyone is told absolutely everything, I think you are mistaken. Nobody > is trying to hide anything, but there are only 24 hours in a day.... Steph, My wife had a bronchoscopy and we stayed in the hospital for a day to be sure there were no complications. When I find out about side effects because my wife has a 101 fever at 12 midnight and I'm told by the doctor on call to take her to the emergency room, that's not good. Lucky for us, my wife insisted on having the doctor that did the biopsy paged at midnight. When he called back, we found out that the fever is one of the complications when blood gets into the lungs, which he knew happened, but everything should be OK. If Tylenol takes care of it within 2 hours, then don't worry. Would have been nice to know beforehand that the blood may cause fever. As for drug side effects, the documentation is very thorough. I don't think the doctor needs to read it out loud. > My wife had a bronchoscopy and we stayed in the hospital for a day to > be sure there were no complications. [quoted text clipped - 8 lines] > hours, then don't worry. Would have been nice to know beforehand that > the blood may cause fever. I hope she'll be okay and the bleeding will stop soon. I know cancers themselves or infections can cause fevers. I don't think I've heard fever associated with bleeding, but hey, I'm not an expert. I only have what the posters remember to tell us here. Keep in touch and let us know how it's going, as you are able, Lee. J > My wife had a bronchoscopy and we stayed in the hospital for a day to > be sure there were no complications. [quoted text clipped - 8 lines] > hours, then don't worry. Would have been nice to know beforehand that > the blood may cause fever. How's she doing, Lee? J Steph wrote... > I do my very best to give my patients all the information that is relevant, > and what I judge to be relevant might be different between a thirty six year > old university professor and a 92 year old retired janitor. But nobody can > be told everything about any treatment and its complications, and if you > think anyone is told absolutely everything, I think you are mistaken. Nobody > is trying to hide anything, but there are only 24 hours in a day.... Steph, My wife had a bronchoscopy and we stayed in the hospital for a day to be sure there were no complications. When I find out about side effects because my wife has a 101 fever at 12 midnight and I'm told by the doctor on call to take her to the emergency room, that's not good. Lucky for us, my wife insisted on having the doctor that did the biopsy paged at midnight. When he called back, we found out that the fever is one of the complications when blood gets into the lungs, which he knew happened, but everything should be OK. If Tylenol takes care of it within 2 hours, then don't worry. Would have been nice to know beforehand that the blood may cause fever. As for drug side effects, the documentation is very thorough. I don't think the doctor needs to read it out loud. > My wife had a bronchoscopy and we stayed in the hospital for a day to > be sure there were no complications. [quoted text clipped - 11 lines] > As for drug side effects, the documentation is very thorough. I don't > think the doctor needs to read it out loud. Cancer can cause fevers, infection too. I'm not sure I've heard that blood in the lungs can, but maybe Steph or Mike will ring in on that one. Maybe the blood is a complication of a biopsy? How's she doing now, Lee? And how are you doing? J > Cancer can cause fevers, infection too. > I'm not sure I've heard that blood in the lungs can, but maybe Steph or > Mike will ring in on that one. > Maybe the blood is a complication of a biopsy? > How's she doing now, Lee? And how are you doing? > J When you stick a big needle in someone it may well bleed and blood is quite irritant in the wrong place = inflammation = fever. Usually will settle and Tylenol/Panadol will reduce temp. Doc who did biop was right but so was ed doc based on what they knew. MIKE I don't disagree with you. I believe that many patients will not want to know low chance risks and will get upset if you tell them. I thougt a bit about this topic today and realized why we chose the oncologist we did. She understood our needs and was able to meet them. We are not the average patient/spouse, and I am guessing that no patient is. If a doctor is able to know the patient then s/he can provide better quality care and understand what the patient needs and wants to know. Each patient may need completely different amount of detail. If the doctor follows the same protocol for all, then it matters less which doctor provides the care. At the extreme, a (theoretical) computer could provide the care. With cancer rates as high as they are, there are probably not enough oncologists to go around, and so their time is limited. They see so many patients that they are experts at diagnosing, staging, and prescribing the treatment. As humans doing our jobs, its easy for any of us to forget what really matters. Understanding and emotional empathy. Treatment without the human connection is worse then spending the last few months of life with caregivers that run a chemo factory. This is a statement of how we feel as patients, it is not meant to point blame. I know the hours and effort it takes, but the connection with patient is often missed. So, sorry, I'm a selfish bastard and will look for twenty opinions until I find one that meets my needs. I feel that other patients who don't have the time or money to invest will have less of a chance for quality care. > I thougt a bit about this topic today and realized why we chose the > oncologist we did. [quoted text clipped - 6 lines] > provides the care. At the extreme, a (theoretical) computer could > provide the care. Not sure who you are replying to (since you did not include some of the quoted text). Medicine is an part art and part science, but there are protocols which are known to work (more than others). > With cancer rates as high as they are, there are probably not enough > oncologists to go around, and so their time is limited. They see so [quoted text clipped - 6 lines] > point blame. I know the hours and effort it takes, but the connection > with patient is often missed. Hopefully you'll remember this phrase "chemo factory", after each course of treatment, when considering "what next" and the aim of treatment. > So, sorry, I'm a selfish bastard and will look for twenty opinions > until I find one that meets my needs. I'm sorry Lee, this part kind of made me "steam"; It's your wife's needs and wants (and quality of life) that are important now. > I feel that other patients who don't have the time or money to invest > will have less of a chance for > quality care. Not sure what you are referring to. I imagine there are patients in the US who don't have insurance coverage or money to get properly diagnosed, much less treated. Each onc, I imagine, has their own style. Is cancer care in the US that bad? J Steph, If I were the patient then I would have asked the question (side effects). If you looked at me like I was crazy I'd think about finding another doctor. I like to know of all possible complications beforehand, and make informed treatment decisions. I would spend some time researching alternatives to avoid the radiation. Are we thinking of radiation because it's the only treatment approved by insurance? It is not easy for non-doctors to embrace treatments that you may be used to every day. That's just me. I know plenty of people that can put 100% of the decision in their doctor's hands, (which may be tied by the insurance company - I'm in the US). > That's just me. I know plenty of people that can put 100% of the > decision in their doctor's hands, (which may be tied by the insurance > company - I'm in the US). I don't see the connection between doctors informing patients and insurance companies? I work in a large Hospital and deal with many insurance companies daily. Guess Who, Some doctors will not offer treatments or tests that are not covered by insurance. For example, Tarceva can show response in 2 weeks. If an Asian non-smoking woman has inoperable NSCLC but her insurance won't cover it as a first line defense, her doctor might not even giver her the option for Tarceva - (70+% response rate of her sub-group) Even when treatment is covered, the schedule can be delayed waiting for insurance "pre-certification." If the patient lets their doctor know NOT TO WAIT then the schedule can be expidited by weeks (or months when you consider that each step requires pre-certification) -Lee > If I were the patient then I would have asked the question (side > effects). > I like to know of all possible complications beforehand, and make > informed treatment decisions Lee, was it you who went toseveral oncologists? A second opinion I can understand. But I wondered what the first and second said or did (or failed to say or do), that prompted seeing and deciding on another oncologist? (if you don't mind sharing, please) and no names please. Or what was the ultimate deciding factor? Thanks, J J, Yes, we went to several oncologists AND a surgeon. The first oncologist was far from home but we got a next day appointment through connections, before any biopsy. Very good doctor, but far from home and too early to determine treatment. Second oncologist was at a local hospital after the biopsy. Recommended one chemo regimen. Spoke to me mostly, though my wife has the cancer. Third was at a major cancer center in NYC. We went there to find out about any leading treatments and to see if they had different treatment reccomendations. He said to start with Tarceva plus Cisplaten and Dosytaxl (sp?), stop taking ALL nutritional suppliments and start immediately, no question, anything else is not worth discussing. Fourth was a pulmonary surgeon - to get a different perspective. He reccomended getting a biopsy of the PET Scan "bone spot", because at my wife's young age he would not want to exclude surgery if the spot was NOT a metastesis. Prior oncologists did not suggested this - and statistically they probably felt that the biopsy was unecessary. But this made us feel that the surgeon REALLY CARED ABOUT OUR QUALITY OF CARE instead of us feeling like "pesky customers". By the way, the 2nd oncologist agreed that it was a good idea to go to NYC and to the surgeon after my wife told him she was going to go. Fourth was an oncologist highly reccommended by the surgeon. We went because we trusted the surgeon's opinion. The oncologist seemed bothered that we already had seen other oncologists. He offered a chemo treatment. Otherwise he was pleasant enough. Fifth was at a cancer treatment center reccommended by several friends. This doctor was the only oncologist to give us information on available trials and two options for first line treatment, both of which she felt had the same chance of success. She spoke with the oncologist in NYC who agreed with her opinion. She also felt that Tarceva should not be mixed with other Chemo because no study was done to determine interaction. She also was the only oncologist to target treatment from the perspective of a sub-group: young woman with NSCLC, and treat based on her experience with that particular group. She said it was good we were working with a Naturopath and she would discuss the suppliments. In the end, yes we know the disease is incurable and there is no way to tell which treatments "work" until you try. We looked for an oncologist who freely gave complete information, was not bothered by "stupid questions", could discuss pros and cons of alternative treatments and connected with us emotionally. As it turns out, she is 15 minutes from our house. -Lee > Fifth was at a cancer treatment center reccommended by several friends. > This doctor was the only oncologist to give us information on > available trials and two options for first line treatment, both of > which she felt had the same chance of success. How does she define success? How do you define success? > She spoke with the > oncologist in NYC who agreed with her opinion. She also felt that [quoted text clipped - 12 lines] > alternative treatments and connected with us emotionally. As it turns > out, she is 15 minutes from our house. I'll say ! You sure shopped around. It does sound like you've found a winner there for an oncologist. Is there a team approach including radiation oncology? Sometimes we get those who tell others to rush to the "best" treatment place and often the best is right in their same neighbourhood especially when considering the trips back and forth. You seem to have lucked out by finding the best one for your wife. Thank you for answering my questions. J >How does she define success? How do you define success? I should have said "response". In this case, The Oncologist is looking for shrinkage and or stabilization of the primary tumor. She defines success as "stabilizing the cancer and hope that in the next couple/few years a new treatment can provide longer survival, turning it into a chronic disease." My definition of "success" is "shrinking the tumor and eliminating the metastesis so that the medical profession will consider surgery or RF ablation as a viable treatment." >I'll say ! You sure shopped around. It does sound like you've found a >winner there for an oncologist. >Is there a team approach including radiation oncology? Yes, they provide radiation. The oncologist is also an Osteopath and knows my wife's Naturopath, who she has argued with on some topics in the past. The Oncologist is open to discussing anything we read on the Internet (we don't get too out of hand) and has had intelligent responses to each of them (she is well versed in alternative therapies). She does not prescribe alternative treatments. A massage therapist training in Energy Healing comes to the clinic twice a week for anyone interested in her services. >Sometimes we get those who tell others to rush to the "best" treatment >place and often the best is right in their same neighbourhood especially >when considering the trips back and forth. You seem to have lucked out by >finding the best one for your wife. Yes. Sometimes the "best" makes sense and sometimes you have to stand clear of their ego. -Lee > >How does she define success? How do you define success? > [quoted text clipped - 4 lines] > next couple/few years a new treatment can provide longer survival, > turning it into a chronic disease." How does your wife define success? (is what I meant). > My definition of "success" is "shrinking the tumor and eliminating the > metastesis so that the medical profession will consider surgery or RF > ablation as a viable treatment." Shrinking the tumor is a good goal if it's causing her pain or breathing problems or the goal is surgery. Lee, I've seen some/many try to make it totally disappear. (to their detriment in side effects and quality of life). I'm not sure that you can eliminate the mets since it's in the bone and lymph. As to future (treatments), well we'll have to see. I think it was Iressa that just got shot down and clinical trials take some time. Keep in touch, J PS sorry if I'm misunderstanding anything. My ISP is acting up at the moment, making it difficult for me to go back up and read all your posts. > Fourth was a pulmonary surgeon - to get a different perspective. He > reccomended getting a biopsy of the PET Scan "bone spot", because at my [quoted text clipped - 3 lines] > this made us feel that the surgeon REALLY CARED ABOUT OUR QUALITY OF > CARE instead of us feeling like "pesky customers". Oh I see, the current oncologist recommended a biopsy of the bone. I'm sorry I'm replying in bits, it helps me understand the situation (and hopefully remember). I'm sorry, I cannot find a post by you saying the size of the primary and location. My friend Rian's was wrapped around a blood vessel so surgery and radio was out of the question. I think there's another here where it's close to a blood vessel. Location is important and helps us to understand your goal and decision making process. I look forward to more details. so what's first? The bone biopsy? Chemo to shrink the tumour, then possibly surgery (to remove the tumour and try to slow down the cancer) ? Am I understanding that correctly? Your wife's young, hopefully she'll do well from the surgery. It takes quite a while to recover from such depending on what is removed. Well, here's hoping all goes well. Talk to us anytime, Best J J and All, Thank you all for your input. Sorry I am not frequently on the groups, but my time is spent with family and work. It is amazing how I always knew my priorities but only now am acting on them daily. My wife is doing well so far, considering the diagnosis. We still take charge and work for the treatment Joan wants (with her Oncologist). It is amazing how many "little" things there are that have a big impact on quality of life. Two very recent examples: - Nurse almost gave double dose of Zomeda. Oops! - my wife caught it. - Next scan was scheduled to be CAT and PET separately AND scheduled weeks apart so insurance would approve it. This would mean double the aggrivation (and drink that gross stuff twice) AND delay any reply from RF Ablation (more on that below). So my wife asked for combined PET/CAT, she would rather travel and get all results sooner and in one shot. We all really do need to take charge of our own health care. To recap her status to date: Bone MRI concluded metastesis - 3cm in left thigh, points in L5 and right shoulderblade. Symptomatic left thigh. Changed diet immediately - greatly increase fresh fruits and vegetables, whole grains, limit red meats. As much organic as possible. Wash everything with vegetable wash. First line treatment - 2 weeks of Tarceva showed no change in primary, so switched to Cisplaten/Gemzar per Oncologist reccomendation. My wife researched, requested, and receives a 90-minute Gemzar infusion instead of 30-minute infusion. Radiation to thigh and L5. Primary tumor has responded so far. Srinkage did not seem great but I did a calculation and the volume is roughly 60% smaller than original. I figure that reversed about 1 doubling. Original symptoms subsided soon after chemo started. Side effects 50% hair loss, tired, some minor tingling recently- 9 weeks after chemo started. Fever and other side effects were from Lukine (sp?) and Zomeda, not chemo. This is her fourth 21 day cycle of chemo. Next PET scan is in two weeks. We are contacting two RF Ablation centers with the help of Oncologist. Oncologist is trying to keep us from having false hopes. Work has been great. I spend at least one day a week at the treatment center with my wife. Go in late most mornings and work from home at least one day a week. Neighbors have been wonderful. People we don't even know are bringing us dinner three nights a week. School asked what they could do and are now picking up our son in front of our house (we used to drive him to the corner bus stop). It's crazy how different belief systems can collide. Everyone trys to help in their own way. We have water from Lourdes, access to bones from a saint, Energy Healing and classes, Paul de somethingorother tea, Indian Guru (healing) medetation. All of which we both want to learn about - for me it's mainly curiosity and being able to speak intelligently with others. I still haven't swayed from my current belief system, which is different from my wife's. Thanks again, -Lee L > > Fourth was a pulmonary surgeon - to get a different perspective. He > > reccomended getting a biopsy of the PET Scan "bone spot", because at my [quoted text clipped - 26 lines] > Best > J > My wife is doing well so far, considering the diagnosis. > We still take charge and work for the treatment Joan wants (with her [quoted text clipped - 48 lines] > intelligently with others. I still haven't swayed from my current > belief system, which is different from my wife's. Hello Lee, Thank you for your update. I'll say, not much time for newsgroups. You've both been very busy and we've not heard from you since mid January. I'm glad to read that most of the symptoms have improved. I'm not an expert Lee (so I would have to defer to Steph on this) - I hope your wife realizes that her cancer/stage is not curable and must ever be mindful of less worry about size and being more concerned about using chemo to improve symptoms and quality of life. If a point in time occurs where the side effects overtake (or risk overtaking) the good that chemo does, then it's time for a break for the body to recover and a fresh look at the situation, interspersed with perhaps things she's always wanted to do, but never had the time/inclination, in the past. Lowkey looked into some of those meditations/belief systems with his daughter, mostly for entertainment value and interest in how others live/worship. He certainly would not have bothered with water from Lourdes. YMMV I think those things help the donor more; they feel less helpless if they can "do" something for the patient. It's good to read that your wife caught the "almost nurse error". I'll leave it at that. Keep in touch as you are able. We'll be here for you, if/when questions crop up or anytime you need to vent. J- thinking of you and your wife. >by several friends. > This doctor was the only oncologist to give us information on [quoted text clipped - 17 lines] > > -Lee I like your spirit, seeking the best treatment is the only way your wife can get better. Yes, stats maybe against your wife but your wife isn't a statistic. I would hope you explore all treatment possibilities by licensed and ethical physicians. Having the right attitude is half the battle. Alex > > In the end, yes we know the disease is incurable and there is no way to > > tell which treatments "work" until you try. [quoted text clipped - 10 lines] > statistic. I would hope you explore all treatment possibilities by licensed > and ethical physicians. Having the right attitude is half the battle. Alex Lee knows it's incurable and ethical physicians will tell them what Steph says... http://groups-beta.google.com/group/alt.support.cancer.prostate/msg/bdce41c45fc0b245 "there is nothing on the horizon to suggest that that is going to change anytime soon." J >> > In the end, yes we know the disease is incurable and there is no way to >> > tell which treatments "work" until you try. [quoted text clipped - 22 lines] > soon." > J I have worked in 2 hospitals where people come from around the world after they have been told they are untreatable and incurable many of these people find treatment that either extends their life ( in a meaningful way) or cures them. Many of these treatments are not published yet or posted on the internet. People can google their fingers off and not find these treatments. I think Lee has a great spirit to advocate for his young wife rather then say or well nothing can be done. When Lee and his wife feel they have exhausted there possibilities then they can sit and accept "palliative care". I personally would go many doctors ( ethical and licensed) to find an answer I could live with or die knowing that I got the best possible treatment available. > >> > In the end, yes we know the disease is incurable and there is no way to > >> > tell which treatments "work" until you try. [quoted text clipped - 27 lines] > find treatment that either extends their life ( in a meaningful way) or > cures them. I think we've discussed this before, including Steph's input. There are probably exceptions (diagnostic problems) or countries where they don't get good or expedient cancer care (or expect to get better in the US) and/or it depends on how one defines "meaningful" and "extends their lives". J > When Lee and his wife feel they have exhausted there possibilities then > they can sit and accept "palliative care". I personally would go many > doctors ( ethical and licensed) to find an answer I could live with or die > knowing that I got the best possible treatment available. And there is the danger. If you get enough second, third, fourth etc opinions, you'll eventually find someone who tells you what you WANT to hear. Doesn't make it necessarily true. > And there is the danger. > If you get enough second, third, fourth etc opinions, you'll eventually > find someone who tells you what you WANT to hear. Doesn't make it > necessarily true. That is very true, but two things can happen during this process ( that is why I couched my initial response by saying licensed and ethical) A. A cancer patient can accept the inevitable knowing that they exhausted ALL possible avenues. It can give them and their family some peace knowing they went down fighting. B. They can find a doctor who is developing a new treatment that has yet to be published or a clinical trial that hasn't started the enrollment phase. and Find either quality time ( where you can function for a significant period of time independently and pain free ) or find a cure. Friends of ours had a sick child, basically told just let the child die, the stats don't support any treatment. From a fiscal viewpoint with the initial information the family should have accepted hospice. Because we have choices here in the US they shopped around, found a surgeon who said there maybe hope but didn't feel comfortable or have the expertise to do the surgery. To make a long story short, a visiting surgeon from South America did the surgery ( no google search would have found him) and the child is doing great....100% normal and can expect to live a long life. Of course all the way they could have found a charlatan would could have told them everything is all right, pay XXX number of dollars and things will improve. That is why I say go to an ethical and licensed physician, I would also add try to go the most expert person in that field, since they will have the pulse on what is going on world wide. Alex >> And there is the danger. >> If you get enough second, third, fourth etc opinions, you'll eventually [quoted text clipped - 10 lines] > phase. and Find either quality time ( where you can function for a > significant period of time independently and pain free ) or find a cure. But trial treatments may prove to be better tahn standard, but usually they do not, and often they prove to be worse...... That's why there's a trial > Friends of ours had a sick child, basically told just let the child die, > the stats don't support any treatment. From a fiscal viewpoint with the [quoted text clipped - 4 lines] > America did the surgery ( no google search would have found him) and the > child is doing great....100% normal and can expect to live a long life. With a very rare cancer, I guess > Of course all the way they could have found a charlatan would could have > told them everything is all right, pay XXX number of dollars and things [quoted text clipped - 3 lines] > > Alex <<But trial treatments may prove to be better tahn standard, but usually they do not, and often they prove to be worse...... That's why there's a trial>> But if the initial assessment is that nothing can be done or the usual treatment has has a low success rate , they only thing a person can loose a little time, but that is all explained to the patient, I who opt for one, but it is a personal choice. > <<But trial treatments may prove to be better tahn standard, but usually > they [quoted text clipped - 5 lines] > little time, but that is all explained to the patient, I who opt for one, > but it is a personal choice. Let's face it, you have no way of knowing what you would opt for in 10 or 20 years. People change as they age. J > And there is the danger. > If you get enough second, third, fourth etc opinions, you'll eventually > find someone who tells you what you WANT to hear. Doesn't make it > necessarily true. That is very true, but two things can happen during this process ( that is why I couched my initial response by saying licensed and ethical) A. A cancer patient can accept the inevitable knowing that they exhausted ALL possible avenues. It can give them and their family some peace knowing they went down fighting. B. They can find a doctor who is developing a new treatment that has yet to be published or a clinical trial that hasn't started the enrollment phase. and Find either quality time ( where you can function for a significant period of time independently and pain free ) or find a cure. Friends of ours had a sick child, basically told just let the child die, the stats don't support any treatment. From a fiscal viewpoint with the initial information the family should have accepted hospice. Because we have choices here in the US they shopped around, found a surgeon who said there maybe hope but didn't feel comfortable or have the expertise to do the surgery. To make a long story short, a visiting surgeon from South America did the surgery ( no google search would have found him) and the child is doing great....100% normal and can expect to live a long life. Of course all the way they could have found a charlatan would could have told them everything is all right, pay XXX number of dollars and things will improve. That is why I say go to an ethical and licensed physician, I would also add try to go the most expert person in that field, since they will have the pulse on what is going on world wide. Alex > A. A cancer patient can accept the inevitable knowing that they exhausted > ALL possible avenues. It can give them and their family some peace knowing > they went down fighting. That's not how it went with my friend's family. A year IIRC of going from one procedure/treatment to another across the US. He died within the initial time frame/prognosis for that type and stage of cancer. I posted about healthcare and bankruptcies in the US, IIRC last year to sci.med.diseases.cancer. I'll have to dig that up, to see what the numbers said. Perhaps the patient can die satisfied, but It can be a huge toll (physically, emotionally and financially) on the family. Not everyone has the financial resources that you or others do. And/or I would think increases insurance premiums for those behind them. J > That's not how it went with my friend's family. A year IIRC of going from one > procedure/treatment to another across the US. [quoted text clipped - 4 lines] > sci.med.diseases.cancer. > I'll have to dig that up, to see what the numbers said. http://seattletimes.nwsource.com/html/localnews/2001965063_bankruptcies25m.html > Perhaps the patient can die satisfied, but It can be a huge toll (physically, > emotionally and financially) on the family. > Not everyone has the financial resources that you or others do. > And/or I would think increases insurance premiums for those behind them. > J > I posted about healthcare and bankruptcies in the US, IIRC last year to > sci.med.diseases.cancer. [quoted text clipped - 5 lines] > And/or I would think increases insurance premiums for those behind them. > J I think the choice on how to spend one's money is a personal choice and should not be legislated. Many insurance policies have options to choose to go outside the network, many elect not to have this option since they don't want to pay extra money, therefore I don't think seeking aggressive therapy is the driving force on insurance policies. > I have worked in 2 hospitals where people come from around the world after > they have been told they are untreatable and incurable many of these people [quoted text clipped - 8 lines] > doctors ( ethical and licensed) to find an answer I could live with or die > knowing that I got the best possible treatment available. It's hard to say what you would do. If I recall correctly, you are 6 or 7 years NED (no evidence of disease), never taken hormonal treatments and IIRC never taken chemo. If/when the cancer comes back, the best treatment is probably right at your door. J > It's hard to say what you would do. > If I recall correctly, you are 6 or 7 years NED (no evidence of disease), [quoted text clipped - 3 lines] > treatment is probably right at your door. > J Yes, but I would and did explore other options like MD Anderson and Sloan Kettering. Every research facility focuses in on different aspects of the disease. > J:> It's hard to say what you would do. > > If I recall correctly, you are 6 or 7 years NED (no evidence of disease), [quoted text clipped - 5 lines] > Yes, but I would and did explore other options like MD Anderson and Sloan > Kettering. For surgery and/or diagnosis. > Every research facility focuses in on different aspects of the disease. They don't communicate their research and/or findings with each other? I'm not sure that they do from one province to another in Canada, either. Steph would have to comment as to what he's aware of or not made aware of from other Provinces. J <<They don't communicate their research and/or findings with each other? > I'm not sure that they do from one province to another in Canada, either. > Steph would have to comment as to what he's aware of or not made aware of > from > other Provinces>> In theory you are correct, they do communicate while a study is in progress, but there is a beginning and ending to every study. When I was diagnosed, I was sent to an endocrinologist, which I thought I was odd. The endocrinologist was screening young woman prior to chemo for reasons of bone health. She wanted to get baseline information BEFORE she presented her proposal to form a hypothesis. Although the timing was wrong to enroll in the study, I have been followed in the clinic. The research did show bone loss in younger women related to chemo. I would have never had this intervention ( of taking calcium and fosamax), no google search or medical journal would have pointed me in this direction. > In theory you are correct, they do communicate while a study is in progress, > Yes, but I would and did explore other options like MD Anderson and Sloan > Kettering. Every research facility focuses in on different aspects of the > disease. So you go to one for surgery, another for osteoporosis? Another (or more) for treatment opinions? J > So you go to one for surgery, another for osteoporosis? Another (or more) > for > treatment opinions? > J I don't have osteoporosis due to the forward thinking endocrinologist I was sent to. Now it is proven premenopausal women getting chemo are at high risk for osteoporosis and I got therapy way before it was in fashion. >> J:> It's hard to say what you would do. >> > If I recall correctly, you are 6 or 7 years NED (no evidence of [quoted text clipped - 18 lines] > other Provinces. > J The oncology community is pretty tight all across the country. We refer patients to other provinces if there is something worthwhile for an individual patient which isn't available in the home province > "J" <faked@privacy.net> wrote in message > > [quoted text clipped - 7 lines] > We refer patients to other provinces if there is something worthwhile for an > individual patient which isn't available in the home province Thjanks Steph, that's encouraging :-) J Yes, would you like to know? I would rather here it from my treating physician than read it on the internet. >>> So again, I ask, how do I know if you want to know everything. Because I >>> ask every patient that, and they always say "yes" [quoted text clipped - 13 lines] > cure, should I mention the 1 in 1000 chance of a radiation induced cancer > 15 years later? > So when I treat someone with a T2 larynx cancer, with an 80% chance of cure, > should I mention the 1 in 1000 chance of a radiation induced cancer 15 years > later? I think you have to judge the person's needs on a case by case basis. In my case, I'd want to know there is a remote chance that the cancer can "come back" or a different form of cancer can happen. That way I'd know what to look for and wouldn't be as surprised if it were to happen. Again, one should judge it on their read of a person's personality and needs. Pam S. who was told that Rob's cancer will come back, it's just a matter of time. > I think you have to judge the person's needs on a case by case basis. > In my case, I'd want to know there is a remote chance that the cancer [quoted text clipped - 5 lines] > Pam S. who was told that Rob's cancer will come back, it's just a matter > of time. ( ( ( Pam and Rob ) ) ) J No, it is not a paradox. Both sides have merit. No matter what you do it will not please everyone. So do what you feel best, and expect that some patients will go elsewhere. It is no fault of yours or theirs. We (my wife) went to several Oncologists for opinions until she found an oncologist she felt comfortable with. It's almost like a marriage. > No, it is not a paradox. Both sides have merit. > No matter what you do it will not please everyone. > So do what you feel best, and expect that some patients will go > elsewhere. It is no fault of yours or theirs. > We (my wife) went to several Oncologists for opinions until she found > an oncologist she felt comfortable with. It's almost like a marriage. In some ways more intense than a marriage. Rob's oncologist is a wonderful guy. However, it's his wacked out sense of humor that helps us all get through an appointment. Thank Bast for humor. Pam S. > I myself fell that patients should be told fully about cancer and the risks > of secondary cancer but im afraid that sometimes radiologists fell that is [quoted text clipped - 3 lines] > > natalie Natalie - What I found to be the procedure at the Cancer Center that my husband was treated at was total honesty to any question they were asked. I think they let the patient begin the conversation and took their clues from that. Some people have a need to know exactly what they are dealing with while others take a long time to be able to even say the word "cancer". It was my husband's radiation oncologist that we discussed prognosis with but it was his oncologist who discussed the different things that we should be aware of as far as the future is concerned. I appreciated the honesty and I appreciated that we weren't hit with too much information all at once. Because of the different treatments and the reactions that my husband had to them - a lot of what we were told he doesn't remember. If I hadn't been with him no one would have gotten a clear picture of what was going on. My sister-in-law went with him for an appointment just so that she could talk with the oncologist directly about things she had questions about. My husband is a pretty easy-going guy - especially with we women in his life. :-) Karen |
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