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Medical Forum / Diseases and Disorders / Cancer / March 2004Informed consent for lobectomy
Hello J (no doubt) and others. My name is Dawn, I live on Vancouver Island, Canada, I am 65 and have recently been diagnosed with NSCLC. A suspicious area was seen on X Ray on October 16th, 2003. A CT scan on November 5th showed a mass 1.4 cm in size, and the largest mediastinal lymph node was the pretracheal one measuring 8 mm. A bronchoscopy on December 4th was unremarkable. A needle biopsy was done on December 29th, and I was told it was an adenocarcinoma on January 7th. I am on the surgery waiting list for a lobectomy, and will be seeing the lung surgeon tomorrow for a consultation. I've had lung function tests, but no checks of any kind have been done for possible metastases. Is it customary to do surgery first and check for cancer in lymph nodes or other areas afterwards? If this is so, how can one give informed consent for surgery? I have read that adenocarcinoma is an aggressive type of cancer that metastasises early. How early is early? I'm not sure I would want this surgery if I am likely to get brain cancer before long. I am aware that this is not the usual attitude around here, but that is the way I feel about it. Other than Steph's list of questions, which seem to apply mainly to cases more advanced than mine, are there other questions that I should be asking tomorrow? Any information would be appreciated. Dawn > Hello J (no doubt) and others. My name is Dawn, I live on Vancouver Island, > Canada, I am 65 and have recently been diagnosed with NSCLC. A suspicious [quoted text clipped - 18 lines] > > Dawn The questions work for any stage of disease. The issue here, I think, is that nobody knows whether that 8mm node is cancerous or not. The surgeon will usually do frozen section biopsies of the mediastinal nodes at the time of surgery, before contemplating anything like a lobectomy. Extensive investigations for mets in someone who is feeling well is unlikely to be useful. By the way, you have a first class surgeon. Ask him these things tomorrow. He's in a much better position than anyone else to answer............... > > Hello J (no doubt) and others. My name is Dawn, I live on Vancouver > Island, [quoted text clipped - 27 lines] > The surgeon will usually do frozen section biopsies of the mediastinal nodes > at the time of surgery, before contemplating anything like a lobectomy. Where are you, Steph? Does the above mean she does not get as many /extensive cuts until the lymph nodes have been biopsied..and she's on the table waiting while this is done? OR Dawn, did the surgeon explain this part? Is it a front surgery to check the lymph nodes and if too many are involved, he closes up and refers to chemo instead of taking some of the lung (out the back)? J > Hello J (no doubt) and others. My name is Dawn, I live on Vancouver Island, > Canada, I am 65 and have recently been diagnosed with NSCLC. A suspicious [quoted text clipped - 16 lines] > more advanced than mine, are there other questions that I should be asking > tomorrow? Any information would be appreciated. Hello Dawn and welcome to the newsgroup. I have a sneaky feeling you've been "lurking" here for some time. Have you? You are asking all the right questions. (in my opinion) There seems to be some type of collusion going on here. <smile> Steph knows who your surgeon is (please don't name anything identifying about anyone). Maybe I'm assuming wrong, but maybe the CT-scan also scanned your liver (and saw nothing there) ? If so, that could be the best news I've had for weeks. The next best would be that your lymphs are negative AND that the resection can occur. If I recall correctly, a friend of mine was opened up and the tumor was found to be attached to something vascular. If you are reading this before your consult, tell that surgeon to get moving on a date now, because you've got friends in higher places. (on newsgroups - us <smile>). Seriously, I sure hope he get things moving quickly for you and that you're in great shape for the surgery. A friend of mine had a lobectomy and it took him about a year before he felt fully recovered and less pain, but I don't know if there's different methods or approaches. His was from out the right back, I believe and he was 25 years older than you are. I sure hope yours is operable and soon. Here's why:(yours is currently smaller than what's mentioned here) http://www.nci.nih.gov/cancerinfo/pdq/treatment/non-small-cell-lung/healthprofes sional/ For patients with operable disease, prognosis is adversely influenced by the presence of pulmonary symptoms, large tumor size (>3 centimeters), and presence of the erbB-2 oncoprotein.[1-6] Other factors that have been identified as adverse prognostic factors in some series of patients with resectable non-small cell lung cancer include mutation of the K-ras gene, vascular invasion, and increased numbers of blood vessels in the tumor specimen.[ Hugs J > Hello J (no doubt) and others. My name is Dawn, I live on Vancouver Island, > Canada, I am 65 and have recently been diagnosed with NSCLC. A suspicious [quoted text clipped - 16 lines] > more advanced than mine, are there other questions that I should be asking > tomorrow? Any information would be appreciated. Hi Dawn, How did the consult go? J > > Hello J (no doubt) and others. My name is Dawn, I live on Vancouver Island, > > Canada, I am 65 and have recently been diagnosed with NSCLC. A suspicious [quoted text clipped - 19 lines] > Hi Dawn, How did the consult go? > J Very well thank you. He deftly evaded a few questions, but answered most. He is very straightforward and inspires belief that he is giving honest answers. He is obviously as frustrated as his patients at the length of the wait for surgery - a political not a medical mess. I must say though, the more I read of what you write about lobectomies, the less certain I am that I want this surgery. We did also discuss minimally invasive or video assisted procedures. It is unsettling to know that this is being done, but not be able to know whether it will be possible for me to have this type of surgery. Dawn > > > Hello J (no doubt) and others. My name is Dawn, I live on Vancouver > Island, [quoted text clipped - 37 lines] > is being done, but not be able to know whether it will be possible for me to > have this type of surgery. Hi Dawn, I don't recall writing about lobectomies (other than one - friend's father in law). If I did not mention it, he's much older than you, a heavy smoker, overweight and lost his wife 2 years prior to his surgery (depressed). So he continues to smoke and really not care about his health (much) which surprised me as to why they did the surgery to begin with. As far as I know, he did not have a needle biopsy, someone pushed the panic button or thought by removing scar tissue (which it turned out to be), his breathing would be better and I think now that it is (better). In fact, he just returned from a 2 week holiday on the East Coast and is carrying on with his regular activities. The information is coming third party (and she's not very good with medical terms) so I'm not sure how much of the lung was removed (see below). So I wish I'd never mentioned that at all. As Steph mentioned, they will not really know the staging unless/until they get in there and sample the lymph node(s?). What questions did he evade? (about brain mets? - he's a surgeon, perhaps mets and the brain is not his field of specialty? and/or he sensed your concern and thought it best to not go into it, until after the results of the pathology report). Seems to me, we've only seen one or two brain mets and one was melanoma and the other breast. However, there could be more out there reading or on the ACOR lists (so try to avoid them). You know Dawn, I'd tell you to ask for a scan of your brain, but 25 years ago, I had one when my thyroid acted up and I had pain at the top of my head (and headaches) and mentioned it when they asked. So they sent me for a scan and found a lesion on the top of my head. (the others are probably getting bored with this story). Anyways, they told me it was a "venous lake". But I understood it as "venus lake" so I told everyone my headaches were due to a "venus lake". After all that, the headaches were due to stress <g>. As it turns out, last year my doctor clarified, that wasn't the area of concern at all. It was a granuloma on the back of my head that had them in an uproar. Long story to say that having a brain scan at this point, might just add to any anxiety, because I would think that most of us have small lesions of one type or another and cannot be defined without having a brain biopsy. This website seems pretty positive about early stage NSCLC and surgeries http://www.treatments-for-lung-cancer.com/html/surgery.php3 I'd do it in a heartbeat, rather than do nothing at all. (but that's me) I suppose another choice is to do nothing and watch how fast it's spreading or not, but by then your surgical solution might no longer be available. Mom died of lung cancer, caught too late. There's also a private ACOR e-mail list http://listserv.acor.org/archives/lung-nsclc.html (300 or more subscribers) in case you'd like to join. I hope they won't be scaring you with their stories. Keep in mind everyone's different and hey, I just heard that BC has the best reputation with cancers, because they throw a lot of money at it. So hopefully your surgery will come up soon and it will be the best news recently on this newsgroup. Hang in there with us. Please stay in touch. I care. Post anytime. We're here for you. ( ( ( Dawn ) ) ) J > > Black Sheep wrote: > > Very well thank you. He deftly evaded a few questions, but answered most. [quoted text clipped - 67 lines] > ( ( ( Dawn ) ) ) > J I think what worries me most is going from feeling just fine, as I do right now, to being in pain for the rest of my life. I'm sorry, I should not have singled out your comments as distressing to me, actually it is a cumulative effect. Every site about thoracotomies that I looked at lists chronic pain right up there on the list of possible complications, immediately after bleeding to death or getting an infection. (Did that old chap you mentioned actually go on a vacation, or did you just invent that to cheer me up?) As this is a significant concern to me, one of the questions that I asked my surgeon was how common this is. He said 10% to 15 % of cases. His reply to the success rate (in terms of 5 year survival) of this operation for a T1N0 NSCLC agreed with the site you cited - 60% to 70%. Now normally I am a pretty positive sort of person, but I can't shake the feeling that I'm positively going to be one of the 10 % to 15 % with chronic pain, and one of the 30 % to 40% that doesn't survive. The longer I have to wait and the more I read, the stronger this premonition becomes. Only 15% of smokers get emphysema, and I got emphysema, and a very small percentage of smokers actually get lung cancer, and I got lung cancer. In case you are wondering, I did quit smoking four years ago. The questions he evaded were how long it takes for a T1N0MO to become T1N1 (or N2 or N3) or M1. Perhaps these are unanswerable questions. The closest he would come was that if any nodes were positive, radiation is recommended, and survival rate drops to 40 % to 50 % for N1 and 15% to 35% for N2 or N3. I'm sure a brain scan would be a waste of money right now, not accurate enough to find a few cells that could become a metastatic tumor in a few years. It's too late to warn me about the ACOR lists, I read about them here, and decided I'd better check them out. What a depressing place! Can't blame them of course, I'm sure all of them would be overjoyed to trade problems with me, and there is some interesting information specifically about lung cancer. Not that this place is exactly a barrel of laughs either, but at least the shape of a nose after cancer surgery, and bumps on behinds, and fears about pain are treated as legitimate concerns. Dawn > I think what worries me most is going from feeling just fine, as I do right > now, to being in pain for the rest of my life. I'm sorry, I should not have [quoted text clipped - 5 lines] > this is a significant concern to me, one of the questions that I asked my > surgeon was how common this is. He said 10% to 15 % of cases. Part of what happens with you depends on whether you'll have radiation therapy or chemo (or not). (which my "friend" did not) No, I did not make it up. His wife died Feb 1999 He had his surgery Feb or March 2000 He did not go on holiday winter 2001 (however, we thought some of his "moans and groans" had to do with his lung..and it turned out he had a spine cyst that had been bothering him for many years, so he had some minor surgeries on that this past year and seems fine). He did go holiday winter 2002 2 weeks, summer 2002 2 weeks, winter 2003 2 weeks and summer 2003 one month (drove from Ontario to Nova Scotia all by himself). This past winter he went for a month, but he flew, only because he calculated the cost of gas and airfair had dropped due to a new airline here, so rather than right the snow, he decided to take the fast/safer mode of transportation). As far as I know (and last seen at Easter, he was pretty well back to his old self again. J > > I think what worries me most is going from feeling just fine, as I do right > > now, to being in pain for the rest of my life. I'm sorry, I should not have [quoted text clipped - 24 lines] > self again. > J PS I forgot to mention one winter he did not drive 1.5 hours here for christmas dinner, daughter in law was offended. But his visits involved overnight stays and something tells me that first Christmas when he was complaining of pain was not just the lung surgery, the back cyst but having to sleep on a cot. <g> They don't have extra bedrooms. J > The questions he evaded were how long it takes for a T1N0MO to become T1N1 > (or N2 or N3) or M1. Perhaps these are unanswerable questions. I think you're right. > The closest > he would come was that if any nodes were positive, radiation is recommended, and no surgery? or after surgery? > and survival rate drops to 40 % to 50 % for N1 and 15% to 35% for N2 or N3. > I'm sure a brain scan would be a waste of money right now, not accurate > enough to find a few cells that could become a metastatic tumor in a few > years. I think you're right (about brain) J > I think what worries me most is going from feeling just fine, as I do right > now, to being in pain for the rest of my life. I'm sorry, I should not have [quoted text clipped - 3 lines] > bleeding to death or getting an infection. (Did that old chap you mentioned > actually go on a vacation, or did you just All right...sorry I have to reply separately Dawn, I'm not good at inserting text in between. Is there a problem with you taking pain mediations? for some reason I can't don't find the same sites that you do, so I'll share my "internet trip" with you. http://www.cts.usc.edu/lpg-thoracotomy-risksandcomplications.html http://www.somersetmedicalcenter.com/11008.cfm http://www.doereport.com/generateexhibit.php?ID=588 Now after I saw that last one, I thought "yikes, maybe she should go outside the system for the "video assisted" (VATS) (even if there's one in Alberta) or ask the surgeon if there's a surgeon in the system with training and exerience in same...but then I came across these <http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=1 2171836&dopt=Abstract> Chest. 2002 Aug;122(2):584-9. Related Articles, Links Quality of life following lung cancer resection: video-assisted thoracic surgery vs thoracotomy. Li WW, Lee TW, Lam SS, Ng CS, Sihoe AD, Wan IY, Yim AP. Division of Cardiothoracic Surgery, Department of Surgery, The Chinese University of Hong Kong, Prince of Wales Hospital, Hong Kong SAR, China. STUDY OBJECTIVES: Quality of life (QOL) following video-assisted thoracic surgery (VATS) major lung resection has not been systematically studied. This study was designed to evaluate the intermediate to long-term QOL in patients with lung cancer following resection, comparing VATS with thoracotomy. DESIGN: Cross-sectional study, telephone survey. METHODS: Of 136 disease-free surviving patients with non-small cell lung cancer operated on between 1994 and 2000, 45 patients were excluded because of large tumors (> 5 cm) or locally advanced disease, and another 27 patients were excluded because of adjuvant therapy, coexisting cancer from another source, or psychiatric illness. At the time of the survey, 13 patients were found to be either unsuitable or unwilling to participate. This left a total of 51 patients, with 27 patients in the VATS group and 24 patients in the thoracotomy group (open group), for the final analysis. QOL was assessed using Chinese versions of the European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire (QLQ)-C30 and the EORTC QLQ-LC13, supplemented with nine self-developed surgery-related questions. RESULTS: Mean follow-up time was 33.5 months in the VATS group (median, 20.8 months; range, 6.0 to 84.2 months) and 39.4 months in the open group (median, 37.7 months; range, 7.0 to 75.1 months). Both groups had good QOL and high levels of functioning despite a fairly high incidence of symptoms. There was a trend for VATS patients to score higher on the QOL and functioning scales and to report fewer symptoms. However, these differences did not lead to statistical significance. CONCLUSIONS: This study showed that lung cancer patients with resectable disease following surgical treatment without recurrence have good QOL and high levels of functioning on intermediate to long-term follow-up, with no significant differences between the VATS and open groups. PMID: 12171836 [PubMed - indexed for MEDLINE] and more of concern... http://www.dcmsonline.org/jax-medicine/2003journals/lungcancer/controversies.htm Proponents of VATS lobectomy / pneumonectomy show evidence that the ability to provide a standard lung resection and a proper mediastinal lymph node dissection is preserved. There is some evidence that these patients have decreased pain and analgesic requirements, as well as better lung function early after surgery.9 However, these advantages appear to be lost within a few weeks. Finally, although some series suggest that the overall morbidity, mortality, and length of stay are less with thoracoscopic resection, these studies have been poorly controlled. Currently there is no published randomized trial available that addresses this controversy The controversy regarding VATS for lung cancer revolves around its use in major pulmonary resections for cancer. It is generally believed that palpation plays an important role in the assessment of the tumor mass, and its invasion of other structures. This "hands on" evaluation is lost with VATS. In addition, the palpation of the remaining lung for occult tumor nodules is not possible. There is concern regarding the ability to perform a complete resection and a proper lymph node dissection with VATS. Also, even after the intended lobe or lung is separated from adjacent structures, its removal from the pleural cavity requires a much larger incision, the so-called "utility thoracotomy." Thus, the potential advantage of small incisions may be lost. In addition, there is a temptation to perform less than a standard resection for small peripheral lesions. This has significant implications for local control, recurrence, and survival (see below). Finally, there are a number of reports of tumor implants discovered in access port incisions. This incidence appears to be low, less than 1 %, but still represents a failure of tumor eradication.8 To address this issue, a randomized trial was conducted by the Lung Cancer Study Group.11 In a group of 246 patients with T1 N0 lung cancers, 122 underwent limited resections (segmentectomy or wedge), while the remaining patients received standard lobectomy. In the limited resection group, the local recurrence rate was tripled and the death rate was increased by 30 % when compared with the lobectomy group. Potential reasons for this may be due to cancer cells in lobar lymphatics or intrapulmonary lymph nodes that may not be removed by a limited resection. The evidence suggests is that lobectomy continues to be the procedure of choice for cure. Lesser resections carry increased risks of local recurrence and reduced survival and should only be done in poor risk individuals. I'll have to leave you to read and consider that and the rest of the article. Hugs J > > I think what worries me most is going from feeling just fine, as I do right > > now, to being in pain for the rest of my life. I'm sorry, I should not have > > singled out your comments as distressing to me, actually it is a cumulative > > effect. Every site about thoracotomies that I looked at lists chronic pain > > right up there on the list of possible complications, immediately after > > bleeding to death or getting an infection. > Is there a problem with you taking pain mediations? I don't seem to respond typically to drugs that TV says work 100% of the time! I've never had a headache that went away with aspirin, anacin, tylenol, excedrin, or extra strength any of those. 222's work, but only if I take three. When I had the needle biopsy, the proceedure itself was less painful than stubbing your bare toe on the edge of a door (although not much), but when the local anaesthetic wore off I was in a lot of pain, and the two Tylenol 3's they gave me did nothing. (For anyone facing a needle biopsy, apparently I was the second one in over 400 lung biopsies to experience this intensity of pain.) After much consultation and paperwork and signatures they parted with a shot of Demerol, which did work. > for some reason I can't don't find the same sites that you do, so I'll share my > "internet trip" with you. > http://www.cts.usc.edu/lpg-thoracotomy-risksandcomplications.html > http://www.somersetmedicalcenter.com/11008.cfm > http://www.doereport.com/generateexhibit.php?ID=588 This is the one that remained most clearly in my memory - straight from the first page of Google results on "thoracotomy" http://www.roswellpark.org/document_3055_544.html > Now after I saw that last one, I thought "yikes, maybe she should go outside the > system for the "video assisted" (VATS) (even if there's one in Alberta) or ask > the surgeon if there's a surgeon in the system with training and exerience in > same...but then I came across these <http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_u ids=12171836&dopt=Abstract> > and more of concern... http://www.dcmsonline.org/jax-medicine/2003journals/lungcancer/controversies.htm > I'll have to leave you to read and consider that and the rest of the article. Thank you for taking the time to locate all this information. I do appreciate it. Would you be insulted if I shared with you a joke about interpretation of scientific and medical writings? Dawn > > > I think what worries me most is going from feeling just fine, as I doright > > > now, to being in pain for the rest of my life. I'm sorry, I should nothave [quoted text clipped - 8 lines] > time! I've never had a headache that went away with aspirin, anacin, > tylenol, excedrin, or extra strength any of those. Oh I see, well I discovered years ago, that tylenol extra strength only works for me for (most ) headaches if I eat. > 222's work, but only if > I take three. When I had the needle biopsy, the proceedure itself was less [quoted text clipped - 10 lines] > first page of Google results on "thoracotomy" > http://www.roswellpark.org/document_3055_544.html I missed that one, due to the other keywords I had in my search string. (it was probably there, but I had 3 search windows open and stopped after 9 Google pages). I see they mention pain 6 or 7 times. I can't (blissfully for you and the others here) tell you what my friend's FIL was given for pain. They are "stingy' here on pain medications (tolerance, addictions, worry about hurting other organs etc) other than in palliative care settings. We wouldn't want a 65 year old lung cancer patient out there in the wilds of Vancouver selling her pain medications <making fun at the "pain medication police"> But seriously, I understand your concerns. I also hear that pain specialists out there now have some type of "pain contract" ? There is now the lovely Neurontin which I hear helps with nerve pain (and makes a person, some say, sleepy). It's expensive though, so I've not tried it. > http://www.dcmsonline.org/jax-medicine/2003journals/lungcancer/controversies.htm > > [quoted text clipped - 3 lines] > appreciate it. Would you be insulted if I shared with you a joke about > interpretation of scientific and medical writings? Go for it Dawn. Hugs J > Would you be insulted if I shared with you a joke about > > interpretation of scientific and medical writings? > > Go for it Dawn. > Hugs > J Jokes of any kind don't really seem appropriate here, but sometimes if you don't laugh, you'll cry. The following list of phrases and their definitions might help you understand the fuzzy language of science and medicine. These special phrases are also applicable to anyone reading a PhD dissertation or academic paper. "IT HAS LONG BEEN KNOWN"... I didn't look up the original reference. "A DEFINITE TREND IS EVIDENT"... These data are practically meaningless. "WHILE IT HAS NOT BEEN POSSIBLE TO PROVIDE DEFINITE ANSWERS TO THE QUESTIONS"... An unsuccessful experiment but I still hope to get it published. "THREE OF THE SAMPLES WERE CHOSEN FOR DETAILED STUDY"... The other results didn't make any sense. "TYPICAL RESULTS ARE SHOWN"... This is the prettiest graph. "THESE RESULTS WILL BE IN A SUBSEQUENT REPORT"... I might get around to this sometime, if pushed/funded. "IN MY EXPERIENCE"... Once. "IN CASE AFTER CASE"... Twice. "IN A SERIES OF CASES"... Thrice. "IT IS BELIEVED THAT"... I think. "IT IS GENERALLY BELIEVED THAT"... A couple of others think so, too. "CORRECT WITHIN AN ORDER OF MAGNITUDE" ... Wrong. Wrong. Wrong. "ACCORDING TO STATISTICAL ANALYSIS"... Rumour has it. "A STATISTICALLY-ORIENTED PROJECTION OF THE SIGNIFICANCE OF THESE FINDINGS"... A really wild guess. "A CAREFUL ANALYSIS OF OBTAINABLE DATA"... Three pages of notes were obliterated when I knocked over a beer glass. "IT IS CLEAR THAT MUCH ADDITIONAL WORK WILL BE REQUIRED BEFORE A COMPLETE UNDERSTANDING OF THIS PHENOMENON OCCURS"... I don't understand it....and I never will. "AFTER ADDITIONAL STUDY BY MY COLLEAGUES"... They don't understand it either. "A HIGHLY SIGNIFICANT AREA FOR EXPLORATORY STUDY"... A totally useless topic selected by my committee. "IT IS HOPED THAT THIS STUDY WILL STIMULATE FURTHER INVESTIGATION IN THIS FIELD"... I am pleased to feed you this bullshit and hope that it will cause more to be produced.. > > Would you be insulted if I shared with you a joke about > > > interpretation of scientific and medical writings? [quoted text clipped - 76 lines] > I am pleased to feed you this bullshit and hope that it will cause more to > be produced.. That's hilarious, Thanks, J > Jokes of any kind don't really seem appropriate here, but sometimes if you > don't laugh, you'll cry. [quoted text clipped - 4 lines] > I am pleased to feed you this bullshit and hope that it will cause more to > be produced.. Great find, wherever you got them. I'd sure like to make up a list of from PubMed. They put fancy words in like in vitro apoptosis and mouse tumors and everyone (almost) gets excited. (meantime my brain's saying, well get to the point, does it work or not..and it ends with "more studies...." <g> I could pour vinegar over mouse tumour cells in a petri dish and whack out the cancer cells. Does that mean I'd be drinking vinegar to kill cancer in my foot or liver? Nope, it would burn a hole in my esophagus, stomach or bowel before it ever had a chance of killing one darned cancer cell. J > I don't recall writing about lobectomies (other than one - friend's father in > law). If I did not mention it, he's much older than you, a heavy smoker, > overweight and lost his wife 2 years prior to his surgery (depressed). So he > continues to smoke and really not care about his health (much) which surprised > me as to why they did the surgery to begin with. Just want to clarify something in case anyone misunderstands. Just because a person is a smoker (or was), does not mean that I think they should not be helped. What happened is this person was so "down" (I want to die, who cares, I want to join my wife etc).that: a) we were all worried that going into major surgery with that attitude & age & health did not bode well for his survival or recovery b) wondered if he'd be functional (breathing) enough after surgery (and would regret it). b) wondered how he'd recover living on his own (without complications). He did it ! and apparently has no regrets, so I'm happy it all worked out good :-) J > As far as I know, he did not > have a needle biopsy, someone pushed the panic button or thought by removing [quoted text clipped - 4 lines] > so I'm not sure how much of the lung was removed (see below). So I wish I'd > never mentioned that at all. >Subject: Informed consent for lobectomy >From: "Black Sheep" dawnedondawn@hotmail.com >Date: 1/21/2004 8:07 AM Iran Standard This reply is a little old so perhaps you have already seen your surgeon. Practically, one would not spend 1,000's if not tens of thousands, checking potential areas of metastases, bone scan, brain scan, etc. One could do a Pet scan to check for any areas of metastasis. The Ct Scan showed one positive node? Time >Message-id: <bukvim$imvt9$1@ID-93230.news.uni-berlin.de> > [quoted text clipped - 20 lines] > >Dawn > >Subject: Informed consent for lobectomy > >From: "Black Sheep" dawnedondawn@hotmail.com [quoted text clipped - 3 lines] > Practically, one would not spend 1,000's if not tens of thousands, checking > potential areas of metastases, bone scan, brain scan, etc. That does make sense from a practical point of view. And I suppose even if the results were positive, most people would still want to go for the surgery. One could do a Pet > scan to check for any areas of metastasis. The Ct Scan showed one positive > node? One node slightly enlarged. No one has told me if that means it is definitely cancerous. If you ask a specific question I think the doctor gives you an honest answer, but if you forget to ask, or don't know enough to ask, I don't think they volunteer information especially when they are not positive what the answer is. Pet scans are available here, but must be paid for by the patient, and my surgeon said he did not believe they provided sufficient extra diagnostic information to be worth while. Dawn > That does make sense from a practical point of view. And I suppose even if > the results were positive, most people would still want to go for the > surgery. Well, it seems to me that by removing the main source of cancer (and as many involved lymph nodes?) has a better chance of "buying time" AND if chemo is taken after, perhaps less strong a chemo regimen? > One node slightly enlarged. No one has told me if that means it is > definitely cancerous. My "bet" would be yes, but only the pathology would say.. <http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=1 2537221&dopt=Abstract> In PET analysis 79 true-positive and 304 true-negative samples were found. Five lymph node stations were false negative, and 81 samples were false positive. False-positive findings in PET frequently were seen in inflammatory lung disease.[] "inflammatory lung diseases can cause that", not to mention maybe a little bronchial mucous??? There's where these fancy tests do not replace the old tried and true. > If you ask a specific question I think the doctor > gives you an honest answer, but if you forget to ask, or don't know enough [quoted text clipped - 4 lines] > > Dawn http://www.thieme.de/thoracic/abstracts2003/daten/v20.html Conclusions: HR-CT-scans revealed only a 49% positive predictive value for the accurate diagnosis of lymph node involvement in patients with NSCLC, despite inclusion of morphological criteria for malignant infiltration in addition to size. Therefore, CT-scans can not replace cervical mediastinoscopy in the preoperative staging of NSCLC. I'm putting questions here, in case you can ask the surgeon (or oncologist)? Can you get in to talk with one now? You mention emphysema, just how bad is it? Perhaps the surgery would help that? or make it worse? I swear my left lung is bad, but my doctor says "how do you know".. well, duh, when I breathe in, my left lung does not expand as good as the right one, but he doesn't believe me, yet nothing shows up on X-ray, so trust your gut. Dawn, I'm pulling for you to have the chance that my mother never did and that Rian (here) never did. She went on the strongest chemos and we've not heard here from her since last August. :( Surgery, in her case, wasn't possible. On the other hand, if something does wrong or you end up on strong chemos anyway, or you don't have quality of life after the surgery, I'll feel bad. But I look at it this way, if surgery was offered to you (in Canada), it's because you stand a good chance of both surviving the surgery and fighting this thing. phew! end of rant. <smile> Hugs J > I'm putting questions here, in case you can ask the surgeon (or oncologist)? > Can you get in to talk with one now? After thoughts. Too early to see an oncologist, too many unknowns at the moment. You could start a list of pain medications that you've tried and either did not work or side effects. (for post-op) Make up a pain medication contract and get them to sign it <smile> My friend had to be on tylenol #3's for quite a long time (big surgical mess with her ankle) and her liver enzymes started acting up. So she had to stop them. Later though she found out she has high cholesterol (nobody had checked her before on that), so maybe that was part of the problem. Anyhow, it you're going ahead with this and think a nudge to move you up on the list would help, tell them the whole world's watching your progress on newsgroup and waitng to see if BC will come through for you. Heck, I'll even track down the hospital and/or surgeon and e-mail them, if that what it takes. Just say the word. Hugs J > Anyhow, it you're going ahead with this and think a nudge to move you up on the list would help, tell them > the whole world's watching your progress on newsgroup and waitng to see if BC will come through for you. > Heck, I'll even track down the hospital and/or surgeon and e-mail them, if that what it takes. Just say the > word. > Hugs > J Anyone who can watch B.C. television or read Nanaimo or Victoria newspapers will learn the situation here concerning surgery waiting lists. (Disregard the ads from the BC government about how great things are. The fact that these ads run regularly demonstrates how bad things really are.) We don't have HMO problems here, we get referrals to specialists fairly quickly for serious problems, but surgery is another matter. At my first consultation with the lung surgeon I received a copy of the "Surgery, X-Ray and Booking Process. This process can vary (in time waiting) ..............Urgent Up to 8 weeks Semi urgent 6 months or more Elective 9 months or more <snip> PLEASE TRY TO AVOID PHONING OUR OFFICE TO INQUIRE ABOUT YOUR SURGICAL DATE, as we will be in touch as soon as we are notified by the hospital. CANCELLATIONS Due to situations beyond our control we often need to "bump" surgeries and appointments to a later date. We are always working very hard to give you prompt and efficient care and do apologize if this happens to you. However, emergencies or bed shortages are a frequent cause or disruption to our schedules." So this is the norm here. Complicated during this past week by the fact that the mid island hospital emergency room doctors walked out in a dispute with the government. I doubt if the opinion of this newsgroup, or my "home" group alt.support.stop.smoking too, would carry any influence. So I'm afraid that your e-mailing the hospital wouldn't help. If you'd like to e-mail the premier of BC, Gordon Campbell, his e-mail is premier@gov.bc.ca ;-) Dawn > Anyone who can watch B.C. television or read Nanaimo or Victoria newspapers > will learn the situation here concerning surgery waiting lists. (Disregard [quoted text clipped - 7 lines] > This process can vary (in time waiting) ..............Urgent > Up to 8 weeks Okay Dawn, but the people keeping these lists are morons. You are super urgent. Call them daily or weekly to find out where you are on the list and tell them Less than 3 cm could be the difference between life or death for you. Tell them the National Cancer Institute says that for your cancer. Appeal to their human side, say "what if this was your mother or sister"? I don't mean to have you bump someone as deserving as you, but sometimes these list-keepers work like automatons... Nudge them with facts. The squeaky wheel gets grease (sometimes) and if you have someone male and authoritative voice, ask them to call also. > <snipped> > > So this is the norm here. Complicated during this past week by the fact > that the mid island hospital emergency room doctors walked out in a dispute > with the government. :(( Even more so. (re above nudging). > I doubt if the opinion of this newsgroup, or my "home" group > alt.support.stop.smoking too, would carry any influence. So I'm afraid that > your e-mailing the hospital wouldn't help. If you'd like to e-mail the > premier of BC, Gordon Campbell, his e-mail is premier@gov.bc.ca ;-) Well, we all know (don't we?) that these politicians don't necessarily read their mail. Their assistants do and actually it's my belief that they use these to predict their current popularity for future elections. Besides, that's long-term problem-solving. You don't have time for politics. Now.... the name of the surgeon or hospital getting bad press on newsgroups..is probably not important in our type of health-care. And I don't want to give bad press to your surgeon. It's not his fault and I don't want them switching you to another surgeon, because of what Steph said earlier. However, they (BC hospitals, politicians etc) are no doubt riding on the wave of the press release stating that BC comes out tops in the cancer fight compared to other Provinces. I would tell them that got posted to newsgroups, where millions read. Then tell them (the hospital directors etc), I have the capability of posting how badly one patient has been treated by delays.... I would have to think about what to say and who to e-mail once I looked at the hospital list and the BC Healthcare system and the BC Cancer Agency. <eg> If you change your mind, e-mail the hospital name to call for votes at yahoo dot ca (remove spaces and change the obvious). You're not voting for anything, it was just set up for the vote on the charter last spring, so it's the only one I want to post here. Gotta go take care of me and mine for a bit. Hugs J > However, they (BC hospitals, politicians etc) are no doubt riding on the wave of > the press release stating that BC comes out tops in the cancer fight compared to [quoted text clipped - 4 lines] > about what to say and who to e-mail once I looked at the hospital list and the > BC Healthcare system and the BC Cancer Agency. <eg> OK - I give up - how did you do it? ;-)) I got a call from the doctor's office this afternoon. I am scheduled for surgery February 23rd. > Gotta go take care of me and mine for a bit. I would say about time - do you ever leave your computer? Dawn > > However, they (BC hospitals, politicians etc) are no doubt riding on thewave > of [quoted text clipped - 11 lines] > OK - I give up - how did you do it? ;-)) I got a call from the doctor's > office this afternoon. I am scheduled for surgery February 23rd. Gad, did that crack me up ! I had a really really good "head rant" going for you/your cause while I was relaxing in the bath last night. Not even down on paper yet, so I did nothing at all. We could call it magic or you know Dawn, last year I posted some news article that said [sic] doctors can sometimes learn a lot by reading computer health groups". I think I posted that on sci.med.diseases.cancer and it was met with silence. So who knows who "lurks" here and fears the wrath of "J" and says "guys, let's speed this one up" unless it was just divine intervention or good luck. Honest, I did nothing Dawn but I'm glad you've got a date. Hugs J >> Black Sheep wrote: > > One node slightly enlarged. No one has told me if that means it is > > definitely cancerous. > > My "bet" would be yes, but only the pathology would say.. Does the wording "There are only small unremarkable lymph nodes in the mediastinum, with the largest being in the pretracheal region and measuring 8 mm." tip the odds at all? > You mention emphysema, just how bad is it? Perhaps the surgery would help > that? > or make it worse? Diagnosed as early emphysema 4 years ago when I quit smoking. Actually the routine X-Ray to check on this is the reason my cancer was discovered while it was still quite small. Recent lung function tests and nuclear lung scan and pulmonary function exercise tests have all indicated that I am a suitable candidate for surgery. I wish they would quit playing with their fancy toys and get on with it! > Dawn, I'm pulling for you to have the chance that my mother never did and that > Rian (here) never did. She went on the strongest chemos and we've not heard [quoted text clipped - 5 lines] > thing. > phew! end of rant. <smile> You do a great job of locating information. It is the individual's job to make a decision. Even if I end up on the wrong side of the statistical table, it would be absurd to think it was your fault in any way. Dawn > Does the wording "There are only small unremarkable lymph nodes in the > mediastinum, with the largest being in the pretracheal region and measuring > 8 mm." tip the odds at all? http://tinyurl.com/2yeap well this one seems to say that less than 10 mm is meaningless. However see my "mumbling" post. I think it's likely you'll end up on chemo regardless. (and indeed that's what this seems to say http://www.nci.nih.gov/clinicaltrials/results/surgery-and-nsclc0603) I don't know if once in there, if they discover less involvement (than they've seen with others), they take less lung or take it all just to be as prudent as possible ? On the other hand, removing the part where the emphysema is (if different from where the mass is) might improve your lung function? (was any of that discussed?) Just curious too, if any suggestions were made as to what you could do "preoperative" in preparation? Exercises, walks? to increase muscle strength, lung function etc? (I don't have the answers). Just curiiosity. > Diagnosed as early emphysema 4 years ago when I quit smoking. Actually the > routine X-Ray to check on this is the reason my cancer was discovered while > it was still quite small. Recent lung function tests and nuclear lung scan > and pulmonary function exercise tests have all indicated that I am a > suitable candidate for surgery. I wish they would quit playing with their > fancy toys and get on with it! Me too, because this is where I'm tagging my hope http://www.nci.nih.gov/cancerinfo/pdq/treatment/non-small-cell-lung/healthprofes sional/ For patients with operable disease, prognosis is adversely influenced by the presence of pulmonary symptoms, large tumor size (>3 centimeters), ), and presence of the erbB-2 oncoprotein.[1-6] Other factors that have been identified as adverse prognostic factors in some series of patients with resectable non-small cell lung cancer include mutation of the K-ras gene, vascular invasion, and increased numbers of blood vessels in the tumor specimen.[3,7,8] [] So they won't see vascular invasion until in (I think) and number of blood vessels in the tumor specimen (by pathology)? On the other hand, they tell us that little bits of cancer are floating around long before anything shows up on scans.... > You do a great job of locating information. It is the individual's job to > make a decision. Even if I end up on the wrong side of the statistical > table, it would be absurd to think it was your fault in any way. Thank you Dawn, it is (the individual's job) and I'm sure you're a thinking person but I must post also for others reading who may regard me as "the god of alt.support.cancer" just because I post a lot..means nothing. I have no medical training. I have to repeat that and don't want to spread false hope or lead anyone astray. J > However see my "mumbling" post. I think it's likely you'll end up on chemo > regardless. > (and indeed that's what this seems to say > http://www.nci.nih.gov/clinicaltrials/results/surgery-and-nsclc0603) That certainly seems to show it is advantageous, but I don't know whether it is available as part of standard treatment here yet, or available if patient pays, or not allowed unless you meet specific criteria here. > I don't know if once in there, if they discover less involvement (than they've > seen with others), they take less lung or take it all just to be as prudent as > possible ? My surgeon prefers lobectomy whenever possible, he believes it increases the odds of a cure. I feel if that's what he 's most experienced at, that's what I'd like him to do. > On the other hand, removing the part where the emphysema is (if different from > where the mass is) might improve your lung function? > (was any of that discussed?) Slight possibility that it will help, greater possibility that it won't hurt. This upper lobe is not doing much of the work of oxygenating my blood anyhow, only 6% according to nuclear lung scan and it should be about 17%. > Just curious too, if any suggestions were made as to what you could do > "preoperative" in preparation? > Exercises, walks? to increase muscle strength, lung function etc? (I don't have > the answers). Just curiiosity. Not discussed, but I am going to a physiotherapist now anyhow. We seem to think alike.<g> And I have been a regular treadmill user (I've worn out two of them!) for the past 9 years since I was diagnosed with osteopenia. Dawn > My surgeon prefers lobectomy whenever possible, he believes it increases the > odds of a cure. I feel if that's what he 's most experienced at, that's [quoted text clipped - 5 lines] > think alike.<g> And I have been a regular treadmill user (I've worn out > two of them!) for the past 9 years since I was diagnosed with osteopenia. My friend called last night and I pumped her for answers. Some about pain medications, I really did not get a clear answer. I hope you will have home help in one form or another. She said he could not bend easily because of the rib pain. Don't want to scare you but want to make sure you call on friends, family or whoever to be there to help you in the weeks (I don't know how long) after. She said he was in such pain that he had to wrap his ribs and not bend over too much (but I forget how long this went on). I forgot to ask, but I imagine some type of toilet seat elevator, might be handy? Or maybe he did not take anticipatory pain meds (before the pain)..he's a guy and hates meds. I wonder if the ACOR list or a support group at the cancer agency, someone there could give you an idea. (or if you've someone at home anyway, please disregard this, but you may want to look into what type of wraps - elasticized I've seen at pharmacies), in case you need to send someone out, unless they've given you a preparation list of things to gather up (for possible purchase later),. Look what I found http://www.cts.usc.edu/patientsguide.html perhaps there's some good tips there. Hugs J > > However see my "mumbling" post. I think it's likely you'll end up on chemo > > regardless. [quoted text clipped - 4 lines] > is available as part of standard treatment here yet, or available if patient > pays, or not allowed unless you meet specific criteria here. Upon rereading that article, I'm not sure that it is always that advantageous. Of 1867 patients, 36 % were Stage 1, 25% Stage 2, and 39 % Stage 3. They give the 5 year survival as 44.5 when treated with post surgical chemotherapy, compared to 40.4% with surgery only. But they don't give the results for each stage separately. Perhaps Stage 1 patients showed only 0.5% improvement, Stage 2's 4%, and Stage 3's 8.5%. How excited should one get about a 4% increase in 5 year survival, when it's still only 44.5%? Dawn > > > However see my "mumbling" post. I think it's likely you'll end up on chemo > [quoted text clipped - 7 lines] > > > pays, or not allowed unless you meet specific criteria here. Oh (above) you meant that particular mix of chemos? I'm sure your cancer centre would have the best for your situation. We may have an advantage (unless protocols vary) http://www.bccancer.bc.ca/HPI/ChemotherapyProtocols/Lung/default.htm > Upon rereading that article, I'm not sure that it is always that > advantageous. Of 1867 patients, 36 % were Stage 1, 25% Stage 2, and 39 % [quoted text clipped - 5 lines] > How excited should one get about a 4% increase in 5 year survival, when it's > still only 44.5%? I hear ya and you've not been staged yet (depending on the lymph involvement). I have this "plan for the worst, hope for the best"..want to look at all issues. You would perhaps want to weigh "holding back" progression or recurrence (with chemo) ? But now you are getting into more tough questions. What side effects would you be having? How good & fast they are at responding with meds for side effects? How much nuisance factor (compared to how you want to live your life, like travelling etc) chemo treatments are. (scheduling). Is it given IV in the hand, how good are your veins? Would you end up having to have a port-a-cath? (under the skin so infusions can be given). Are they tablets that can be taken at home or while travelling or holiday? Do they make a person sun sensitive or have hormonal problems How strong a dose? Does that suppress my immune system? Am I open to infections? Would I have to be extra careful to not get pneumonia when socializing etc etc. Some people go on chemo because it is expected. Some have problems, some sail along nicely and continue with their lives, some stay stuck in wanting constant reassessments (CT scans, x-rays to see "did it work") etc.. Perhaps we're getting ahead of ourselves but that's (chemo) partly why Steph wrote the Questions to Ask <http://groups.google.com/groups?hl=en&lr=&ie=UTF-8&selm=KyW97.994%243x.3689%40ne ws.bc.tac.net> Hugs J > > > > http://www.nci.nih.gov/clinicaltrials/results/surgery-and-nsclc0603) > > > > [quoted text clipped - 8 lines] > protocols vary) > http://www.bccancer.bc.ca/HPI/ChemotherapyProtocols/Lung/default.htm No, I mean available at all. I interpret the information in the above link to be discussing chemotherapy only in NSCLCs of stage 3, or advanced, or as palliative treatment. > > Upon rereading that article, I'm not sure that it is always that > > advantageous. Of 1867 patients, 36 % were Stage 1, 25% Stage 2, and 39 % > > Stage 3. They give the 5 year survival as 44.5 when treated with post > > surgical chemotherapy, compared to 40.4% with surgery only. But they don't > > give the results for each stage separately. Perhaps Stage 1 patients showed > > only 0.5% improvement, Stage 2's 4%, and Stage 3's 8.5%. > I have this "plan for the worst, hope for the best"..want to look at all issues. > > But now you are getting into more tough questions. Too true - more questions than I even feel capable of considering. Lots of food for thought though. Dawn > Too true - more questions than I even feel capable of considering. Lots of > food for thought though. > > Dawn Hi Dawn, More food for thought, after the surgery when discussing the pathology of whatever they remove and/or see in there.. and further treatment options.. I just found this when researching for someone else. http://info.cancer.ca/e/glossary/B/Bronchioloavelolar_Lung_Cancer.htm Bronchioloalveolar Lung Cancer A type of lung cancer that tends to develop in the outer areas of the lung and spread along the walls of the smaller airways (alveoli and bronchioles) of the lung. http://tinyurl.com/3cfg6 ASCO website News from the 2003 ASCO Annual BAC, or bronchioloalveolar cell carcinoma, is a form of non-small cell lung cancer (NSCLC). Until recently, it was thought that BAC was a rare cancer, but now researchers think that up to 20% of all NSCLCs contain some BAC. Generally, BAC tumors grow more slowly than other lung cancers, but after treatment these tumors often recur in multiple areas of the lung. BAC usually does not respond to treatment. For you to discuss with the oncologist, if applicable. Hugs J > Hi Dawn, More food for thought, after the surgery when discussing the pathology > of whatever they remove and/or see in there.. and further treatment options.. > I just found this when researching for someone else. > > http://info.cancer.ca/e/glossary/B/Bronchioloavelolar_Lung_Cancer.htm > http://tinyurl.com/3cfg6 . <snip> > Generally, BAC tumors grow more slowly than other lung cancers, but after > treatment these tumors often recur in multiple areas of the lung. BAC usually > does not respond to treatment. Is it acceptable to ask here about off label use of a drug apparently commonly used by members of the ACOR e-mail list of NSCLC ? I have found the original research proposal from July 2001, but can't find any more recent information. You seem able to dig up information on anything! Dawn > Is it acceptable to ask here about off label use of a drug apparently > commonly used by members of the ACOR e-mail list of NSCLC ? I have found > the original research proposal from July 2001, but can't find any more > recent information. You seem able to dig up information on anything! Hi Dawn, I've been avoiding your question but also been busy elsewhere. On the one hand, I'm curious to know. On the other hand, I dread what you about to ask about. Could mean more work for me (researching).. And I want to tell you. I can find almost anything. If a person wants to be convinced that something "works", I can find them. If a person wants to know something doesn't work, I can argue that one also and find backup websites to that one. The latter is usually more convincing to me, because usually the documentation or "proof" is there one way or another. (or it's never been adequately studied or is currently in study). On the other hand Peter Moran might be around who seems to know some/much about altie treatments (if that's what you mean by "off label"), so perhaps between the two of us, we can get some information to you. And we also want to know that something would not be harmful to you, heading into surgery. So sure, go ahead. Hugs J > > Is it acceptable to ask here about off label use of a drug apparently > > commonly used by members of the ACOR e-mail list of NSCLC ? I have found [quoted text clipped - 3 lines] > Hi Dawn, > I've been avoiding your question but also been busy elsewhere. So I noticed. ;-)) <snip> > So sure, go ahead. It's not that weird! <g> It's just Celebrex. Pretty run of the mill NSAID for arthritis. This is the site where the study was discussed. www.cancer.mednet.ucla.edu/newsmedia/ news/pr073101.html I can't find any results, or if it is still in progress, or if it was stopped due to side effect problems. I did see mention of an increase in annual rates of heart attack from .52% in patients taking an inactive placebo to .80% in patients taking this drug. I've seen NSCLC patients on the ACOR list discuss using this drug, they seem to think the possibility it may prevent lung cancer recurring is worth the increased risk of heart attacks. It is apparently still approved as a preventative for colon cancer. As it increases risk of bleeding it would obviously not be taken shortly before surgery, but what about after? As well as, or instead of chemo or radiation? (I too wish the questions would end.) Dawn > It's not that weird! <g> It's just Celebrex. Pretty run of the mill NSAID > for arthritis. [quoted text clipped - 11 lines] > shortly before surgery, but what about after? As well as, or instead of > chemo or radiation? Oh that ! what you want in your searches is the phrase "COX-2 inhibitor" Yours is dated 2001 and this one is 2002 http://www.asco.org/ac/1,1003,_12-002627-00_18-0016-00_19-001235,00.asp Here's how it all got started http://www.the-scientist.com/yr2002/sep/lewis_p_020930.html and abandoned for colon cancer http://www.cancerpage.com/news/article.asp?id=6173 Dawn, I don't know your clotting factors, risk of brain bleed, heart or vascular problems. I don't know where your tumour is or how long it takes any blood vessels that might be involved near your upcoming surgery to recover from any trauma in that area. I don't know what trauma to blood vessels radiation therapy might do. I don't know how long it takes for same to recover from the anesthetic. I suppose if you do not want chemo after the surgery, I guess there's not much problem taking a low-dose of any Cox-2 inhibitor (except that it could blur imaging tests if any inflammation was important for them to view when doing scans for you, which may or may not beome applicable over a longer period). I see some on another newsgroup taking it and having shoulder problems and not being able to get straight answers (from tests) as to whether the shoulder problems are the result of the surgery, arthritis or bone mets/spread. (which can be an anxiety factor). Then the question that comes to mind is does a low dose of cox2-inhibitor have any effect on recurrence or not Maybe try http://www.trialscentral.org/ http://www.clinicaltrials.gov/ (maybe it's too early..ongoing..??) But if you are thinking of cox2 inhibitors and watchful waiting instead of radiation therapy (if you are concerned about side effects, scheduling or further loss of lung function), that would be a possible IF there's no lymph node involvement. Lung cancer tends to spread to the bone, liver or brain (if I recall). All this to day, I think it's best to ask your doctors about if or when you would want to start it. So none of this post is to be construed by anyone as advice either way. J-not a doctor > It's not that weird! <g> It's just Celebrex. Pretty run of the mill > NSAID for arthritis. [quoted text clipped - 15 lines] > > Dawn Hi Dawn, In case you haven't seen them, here are a few more sites on the Cox2 research. It was these which prompted me to ask my onc to put me on it. http://www.med.cornell.edu/news/press/2003/07_14_03.html http://www.oncodx.com/markers/cox2.htm http://www.lungcanceronline.org/treatment-agents/C/celebrex.html http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_u ids=12440624&dopt=Abstract Then just to muddy the water and keep this from getting too easy, there's also this, about possible gastro-intestinal problems from extended use. http://www.ucihealth.com/News/Releases/cox2.htm I don't recall ever seeing anything among these and other stories about heart attack risk. If the reported increase was from 52% to 80%, I'd consider that real cause for concern. But, if it's actually .52% to .80%, that's an increase of less than 1/2 of one percent, and I wouldn't give it a second thought. For me, I'll take my chances on the gastro problems as well. My best to you. Frank > http://www.lungcanceronline.org/treatment-agents/C/celebrex.html Oh good, they're doing clinical trials. Thanks for that, Frank. I wonder why they're not testing another cox2-inhibitor Rofecoxib (Vioxx) J >> http://www.lungcanceronline.org/treatment-agents/C/celebrex.html > > Oh good, they're doing clinical trials. Thanks for that, Frank. > I wonder why they're not testing another cox2-inhibitor Rofecoxib (Vioxx) > J J, According to a study abstract I've read (looking for the site), there were tests on celecoxib and rofecoxib (Vioxx) which have shown the rofecoxib to be less effective. It would appear that it's not quite as simple as just inhibiting cox-2, there's some other, as yet unidentified, difference. OTOH, while hunting, I ran upon this http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db=PubMed&lis t_uids=12440624&dopt=Abstract And this, which is slightly off-topic but interesting http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db=PubMed&lis t_uids=11585835&dopt=Abstract OK, I finally found a version of it http://www.phoenix5.org/articles/Reuters120502painkillers.html This work was "in vitro" and therefore may be limited in application. Frank > J <mARBLEsTEPS@anon.anon> wrote : > [quoted text clipped - 24 lines] > > Frank Hi Frank, thank you for taking the trouble to search those out. You understand that we could "Pubmed abstract" this newsgroup to kingdom come with various "shows promise, more studies..." Especially with "in vitros" and that includes "quack or loonie cures". It's interesting that last one is on the prostate cancer webpage. The guys on the prostate newsgroup are pretty savvy, I try to read there as much as possible. And I rarely see much mention of Celebrex. I just ran a Google newsgroup search and there are some posters, but fewer than I might have expected, given that it's on the phoenix web page. Perhaps it is because they are savvy? Perhaps others on other newsgroups or the world are taking it as a possible preventative or taking it for arthritis and thinking, "well, maybe it's a preventative". Do I know whether or not it is a preventative? No. Do I know whether or not it can stop spread of cancer? No. Do I know whether or not it can, in combo with other treatments, outdo what is currently available? No. What is my concern? That some might abandon conventional treatments and lose their lives. That some might put false hope in something that's not yet proven. That some might take more and wreck their gastro in the process. That some might spend money on it for nothing. It's their money and I can't protect the whole world from buying whatever they want. Bottom line (and I have nothing especially against any pharmaceutical), until it's been proven in longterm clinical trials, to be better than what's currently used as treatments, it's just "hype" and lining the pharma pockets. I realize some of you with cancers can't wait for clinical trial results and feel you have to go with your guts on some of these "promising" theories. If any of you want to take it, run it by your doctors, so they keep note of it in your files. That's just one layperson's opinion - me. . J > > > This work was "in vitro" and therefore may be limited in application. > > > Hi Frank, thank you for taking the trouble to search those out. > You understand that we could "Pubmed abstract" this newsgroup to kingdom come > with various "shows promise, more studies..." Especially with "in vitros" and > that includes "quack or loonie cures". > Do I know whether or not it is a preventative? No. Do I know whether or not it > can stop spread of cancer? No. Do I know whether or not it can, in combo with [quoted text clipped - 17 lines] > That's just one layperson's opinion - me. . > J Thank you both for all of these links. That will keep me out of trouble for today. I understand the concern here that cancer patients not be led astray or tempted to grasp at unproven straws. But I am reminded of the movie "Lorenzo's Oil" - sometimes the proof takes too long. The common sense approach of discussing it with your own doctor, not just experimenting on your own should go without saying, but I guess it doesn't. I did talk to my doctor, he said he'd write the prescription if the lung surgeon had no objections. The lung surgeon doesn't believe in it, but had no objections to my taking it as long as I stopped 10 days before surgery. Which I have. Dawn > I understand the concern here that cancer patients not be led astray or > tempted to grasp at unproven straws. But I am reminded of the movie [quoted text clipped - 6 lines] > > Dawn The concern is that all patients (here or elsewhere) not get led astray. My best friend's brother did. Pancreatic cancer, he pusued everything he read or was told about, every possible procedure throughout the US "dragging the family with him chasing after a cure", he died anyway. After he died, his wife and kids homeless/bankrupt on welfare - ill prepared for the new life. Similar another friend's relative, died on his way down to Mexico. The argument "proof takes too long" could apply equally to "altie cures". I realize you've just joined us but the same "quack cures" are being posted here that have been posted for years and no efforts have been made by the claimers to get them into clinical trials. That's their fault/responsibility until of course, they know their product is useless. <my opinion>. Although NCCAM has started trials of some of them. Anyway, glad your surgeon was upfront about his opinion. But sorted things out so you know for the surgery. Countdown 6? days.. I suppose you go in to the hospital on the Sunday? I remain optimistic for you and the surgery and removal of the tumour and lymph nodes and good news..hopefully. Hugs J > > I understand the concern here that cancer patients not be led astray or > > tempted to grasp at unproven straws. But I am reminded of the movie [quoted text clipped - 29 lines] > Hugs > J I hope no one reads approval of unproven "cures" into my remarks. I was aware that a trial had been started, which seemed to give it some credence, and curious about the results. I didn't expect my surgeon to be the expert on the subject, he's a surgeon, not an oncologist, but if I wanted to try it I needed a) to get a prescription, so I needed my doctors to know I was intending to be sensible, and b) be sure there was no contraindication to taking it at this time. Yes I go in Sunday for surgery Monday morning. Time is moving like an approaching freight train. Seems absurd to feel as well as I do and voluntarily go to get sliced and diced. Perhaps I'll go to Mexico instead ;-)). Dawn > "J" <TheVanGuard@example.net> wrote in message > [quoted text clipped - 6 lines] > approaching freight train. Seems absurd to feel as well as I do and > voluntarily go to get sliced and diced. This remains your choice, Dawn, right up to the last minute (before anesthetic), I expect. Best wishes. J > Not discussed, but I am going to a physiotherapist now anyhow. We seem to > think alike.<g> I seem to think too much. Perhaps after the surgery, once feeling well enough, you'll be out walking more? (ie we'll lose touch with you for quite a while?) and/or make sure your computer area is comfy :-) Otherwise, I'll worry. You wouldn't want that, would you? > And I have been a regular treadmill user (I've worn out > two of them!) for the past 9 years since I was diagnosed with osteopenia. More perhaps too much thinking. I wonder what that (osteopenia) means in terms of ribs healing? I'm unclear if they spread the ribs apart or actually break them on purpose (ack !) and if the latter, if they put them back together or just toss them. Where's a surgeon when we need one to answer these questions <rhetorical>? I miss my pbs and another non-commercial TV station. I used to watch every surgery that I could. J > I seem to think too much. Perhaps after the surgery, once feeling well enough, > you'll be out walking more? > (ie we'll lose touch with you for quite a while?) and/or make sure your computer > area is comfy :-) > Otherwise, I'll worry. You wouldn't want that, would you? No, I would not want you to worry. I'll check in. > More perhaps too much thinking. I wonder what that (osteopenia) means in terms > of ribs healing? > I'm unclear if they spread the ribs apart or actually break them on purpose (ack > !) and if the latter, if they put them back together or just toss them. Where's > a surgeon when we need one to answer these questions <rhetorical>? I think they intend to spread, but that dislocates those two ribs from the breastbone and from the vertebra. I've wondered too whether poor bone density causes them to shatter instead of spreading. > I miss my pbs and another non-commercial TV station. I used to watch every > surgery that I could. I used to love that surgical channel too, then it vanished. Now however I find myself getting queasy just watching ER! Dawn > No, I would not want you to worry. I'll check in. I should have put a smiley " :-) " or a wink ";-) " because I want you to take all the time you need to heal and not worry about me worrying about you, ok? ie don't feel pressured to use the computer if it's best that you not, but of course, I (and perhaps other readers) will be following along and like me, waiting to hear the outcome and hoping for good news. > I think they intend to spread, but that dislocates those two ribs from the > breastbone and from the vertebra. I've wondered too whether poor bone > density causes them to shatter instead of spreading. > > I used to love that surgical channel too, then it vanished. Now however I > find myself getting queasy just watching ER! I guess ! just reading your description is making me wriggle around here (sub-conscious or "sympathetic" discomfort ). BUT, if I was nearby and was allowed in the surgery "theatre", I'd go and cheer you on from up high (if they had a balcony), pace and make faces at the surgeon if he did something I did not like <smile> as if they'd be paying attention to someone watching from above..righteo ! Or bang on the window like that detective "Monk" and point out little discrepancies that I thought might need touching up. <smile> Note to Dawn: does the surgeon know about the osteopenia? Should he (before you get there for the surgery)? Maybe they're quite used to expecting some osteopenia. I don't know. When you go to the radiation oncologist, make sure that's in your questions to ask (or note to them). I don't know if you'll be having rads or not, but just in case it's something important they should be make aware of. ( ( ( Dawn ) ) ) J I'm home J. You can stop worrying! Tough two weeks, still very tired and sore, but on the mend. Thanks for all your help and mental stimulation. Dawn > > No, I would not want you to worry. I'll check in. > [quoted text clipped - 33 lines] > ( ( ( Dawn ) ) ) > J > I'm home J. You can stop worrying! Tough two weeks, still very tired and > sore, but on the mend. Thanks for all your help and mental stimulation. > > Dawn Dawn, I am so relieved and happy to hear from you ! Rest, mend, I'll be here... ( ( ( Dawn ) ) ) J > I'm home J. You can stop worrying! Tough two weeks, still very tired and > sore, but on the mend. Thanks for all your help and mental stimulation. > > Dawn How's the healing going Dawn? Thinking of you, Hugs J > How's the healing going Dawn? > Thinking of you, > Hugs > J Slowly but surely thanks. Follow-up visit with surgeon tomorrow. As you can see, I'm still reading here, still seeking something, I don't know what, to provide reassurance. Any cancer diagnosis, even early and suitable for surgical treatment scares the hell out of you. Especially when you know treated is not necessarily cured. I keep reminding myself that I am one of the lucky ones, but haven't convinced myself yet. Dawn > > How's the healing going Dawn? > > Thinking of you, [quoted text clipped - 9 lines] > > Dawn Take each day as it comes, make the most of the day, who knows what tommorrow brings (even the "healthy" ones can befall tragedy). Hugs Alayne > Take each day as it comes, make the most of the day, who knows what > tommorrow brings (even the "healthy" ones can befall tragedy). > > Hugs > > Alayne Thank you Alayne. I am beginning to accept my good fortune more graciously. I feel almost guilty coming here to report that my lung cancer was staged 1a. Thank you to J also, who must have a marvelous filing system - you can mark mine closed now, with a very successful outcome. I hope it will remain permanently closed, but if not, I know where to come for information and encouragement. Dawn > > Take each day as it comes, make the most of the day, who knows what > > tommorrow brings (even the "healthy" ones can befall tragedy). [quoted text clipped - 12 lines] > > Dawn Don't feel guilty for your good fortune Dawn, life is a lottery, do me a favour? Make the most of that life!!! Take care now and best wishes in all that you do. Hugs Alayne > I am beginning to accept my good fortune more graciously. > I feel almost guilty coming here to report that my lung cancer was staged 1a. [quoted text clipped - 4 lines] > > Dawn Excellent news, Dawn ! I'll miss you but hope you never (have to) come back (as a patient). Fare thee well.... J > Slowly but surely thanks. Follow-up visit with surgeon tomorrow. As you > can see, I'm still reading here, still seeking something, I don't know what, [quoted text clipped - 4 lines] > > Dawn ( ( ( Dawn ) ) ) I'll take my cue from you. Don't want to bug ya. (but I guess I am, eh?) Was the followup to just check your surgical incisions? J |
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