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Medical Forum / Diseases and Disorders / Cancer / March 2005Considering treatments? - Steph's algorithm - Questions to Ask
I''m adding something here, by Steph. "<start quote>For every 100 cancers cured, surgery cures about 55, radiotherapy about 40, and chemotherapy about 5.<end quote> Me from his posts: There are 2 or 3 types of cancer that are curable with chemo. Germ Cell, Hodgkins and I forget the other(s). http://tinyurl.com/4akk6 Google archives If your friend or loved one has been diagnosed with cancer, please print this up and ask them to consider this carefully. <http://groups.google.com/groups?hl=en&lr=&ie=UTF-8&selm=KyW97.994%243...> Patients with cancer have to make very significant decisions about which, if any, treatment to take. The aims of treatment are often rather "woolly", and "success" is measured in things like reduced tumour markers or decreased size of abnormalities on CT scans. These things MAY be associated with improved outcome, but not necessarily so. The fact is that although technically treatments are complex and require skilled supervision, the decision to embark on a treatment should be, if not simple, at least amenable to being assessed logically and objectively. This is the way I get my patients to look at the cost-benefit analysis when deciding on a course of treatment I have suggested would be right for them. The "algorithm" isn't specific to cancer, or even orthodox medicine, but most patients find it useful, and I hope some people on this NG may, too. Question 1 Does the cancer I have pose a threat to my life or health? If the answer to this is "No", then you probably shouldn't be taking treatment. If "Yes", consider treatment by going to the next question. Question 2 Does the suggested treatment have any realistic chance of curing me, and if so, are the side-effects and risks acceptable to me? If the answer to either part of this is "No", then you probably shouldn't be taking treatment. Otherwise go to the next question. Question 3 Although the treatment stands no real chance of curing me, does it stand a realistic chance of extending my survival by some worthwhile amount, and are the side-effects/risks acceptable? If the answer to either part of this is "No", then you probably shouldn't be taking treatment. Otherwise go to the next question. Question 4 Although the treatment stands no real chance of curing me, or of extending my survival, does it stand a realistic chance of improving my quality of life, after I have taken into account the side-effect/risks? If "Yes", go for it. If the answer is "No", then you probably shouldn't take the treatment. A patient's quality of life is not measured by PSA levels (prostate) or CEA (colon) or CA27-29 (breast), but by how they feel and how well they are able to carry on with their life. Improvement in a patient's quality of life is not measured by whether the oesophageal cancer looks smaller on the CT scan, but whether the patient can swallow better. A patient with bone pain is not better because the bone scan is better, but because the pain is better. Think about it. > I''m adding something here, by Steph. > [quoted text clipped - 75 lines] > > Think about it. Probably is worth posting every few weeks. LB > Probably is worth posting every few weeks. > > LB Thanks, but I seem to get flamed (I guess you missed those posts?) for posting too much, not posting enough. <smile> ..not to worry, I'll survive criticisms. And others, read it, then the next post, report that they've started a new chemo.... Or they say they've read it, but it's not time yet. J quote>And others, read it, then the next post, report that they've started a new chemo.... Or they say they've read it, but it's not time yet.<quote So what, I think most people should take everything they read on the internet that has been posted by nameless stangers with a grain of salt, instead of basing their treatment decisions on one source. It's the same mentality that starts people down the "altie" route. You have made it very clear in this "support" group that you disagree with my friends decision to take chemo for pancreatic cancer. Your opinion was considered but ultimately not the one we went with. Chris is off chemo now and, realistically, is probably in his last few months of life. However, we think the decision to take chemo was the best one we made, while it was not without side effects they were much milder than the cancer symptoms that it was suppressing, it was amazing how much sicker he got whenver he went off chemo...towards the end of the longer chemo breaks. And his two worst symptoms, diarrhea and fatigue, were actually cancer symptoms that were very severe at the time he was diagnosed and actually improved somewhat during chemo. I believe that if someone asks a treatment relatedquestion in a support group, people should give their honest opinion. However, I also believe thatonce a person has made their treatment decision that the role of the support group should be to support that decision, whethr or not is was the one you and Steph would've made (with the rare exception of the decision that is life threatening, such as refusing surgery for an easily curable cancer) The patient has lots of decisions to make and it is important that they believe in their treatment, and it is important for th caregivers to support the patient's decision whwther they agree 100% or not. I respect your knowledge, Jean, Butsometimes you are a little too full of yourself....IIRC the role of this group is emotional support, not dictating treatment and getting vaguely indignent when your suggestions aren't followed. Barbara > quote>And others, read it, then the next post, report that they've > started a new chemo.... [quoted text clipped - 4 lines] > salt, instead of basing their treatment decisions on one source. It's > the same mentality that starts people down the "altie" route. The guy who just came in, already had his mind made up. It was obvious. Same for the prior guy "marc" > You have made it very clear in this "support" group that you disagree > with my friends decision to take chemo for pancreatic cancer. Your [quoted text clipped - 18 lines] > important for th caregivers to support the patient's decision whwther > they agree 100% or not. It's important to get the diagnosis right. I do think that I've posted the various types from JHU web site, numerous times, if not directly to you. Apparently diarrhea is pancreatic ca of the endocrine gland http://www.ucpancreas.org/pancreaticcancer.htm I don't recall you mentioning diarrhea before and I don't recognize that as one of the early signs of "pancreatic duct adenocarcinoma or simply pancreatic carcinoma.". Either Chris has it and had some surgery (causing diarrhea) and he was getting palliative chemo or has the other type or if he's been on pain meds, the constipating effect counters the diarrhea effect . I spent a few hours last night trying to refind all your posts. I do remember some "tension" about the chemotherapy, but I thought we'd "made peace" about that. Apparently not. I don't know your real name. It could be "george" for all I know. Same for anyone else who posts here. Hopefully you've found the support (you want/need) with someone else here or elsewhere. Sorry, I can't be everything to everyone. My thoughts will be with you and your friend. J >>Apparently diarrhea is pancreatic ca of the endocrine gland http://www.ucpancreas.org/pancreaticcancer.htm I don't recall you mentioning diarrhea before and I don't recognize that as one of the early signs of "pancreatic duct adenocarcinoma or simply pancreatic carcinoma.". Either Chris has it and had some surgery (causing diarrhea) and he was getting palliative chemo or has the other type or if he's been on pain meds, the constipating effect counters the diarrhea effect.<< I guess that just goes to show that the disease can present in many different ways, diarrhea was perhaps one of the first symptoms, starting 3-4 months before diagnosis and misdiagnosed as IBS (maybe if this was a more common sympton he might have been diagnosed earlier)..then worsening right before the jaundice set in. And yes, he does have pancreatic adenocarcinoma and no surgeries....one thing I have learned is that the variance in the symptoms is much wider than the literature on the disease would lead you to believe. His tumor causes pressure and constriction of the duodenum and the top of the small intestine, this may be the reason. However, again because of the tumor location, he has not experienced any of the intense pain considered characteristic of the disease, thank God. The opiates helped the diarrhea for a month or so after after he started taking them, then ceased to help much...he has been taking tincture of opium orally for months in an attempt to control the diarrhea but it hasn't been really successful. Much of the point I was trying to make was that we always seemed to fail to appreciate how much the chemo (the 2nd regimen in particular, the 1st one was too harsh) improved his quality of life until he went off it.) He would always go into chemo breaks thinking he was going get some relief, then after a week and a half he would start to feel much worse, not better, then would improve again after he went back on chemo. >>I spent a few hours last night trying to refind all your posts. I do remember some "tension" about the chemotherapy, but I thought we'd "made peace" about that. Apparently not. << I think after I made the mistake of posting some scan results to this group back in September, I realized that I would not get support for his chemo here and decided we could agree to disagree. I continued to participate in the group by offering help to others when I could, but took my own treatment questions and support needs elsewhere. However, I have felt lately that your and Steph's strong opinions against chemo for late stage cancer have chased people away from what as of late seems to be a failing newsgroup. As I said yesterday, I think it is absolutely appropriate for someone to post their opinion if the group member asks for opinions regarding treatment options, but if someone is in a treatment regimen and is asking questions about their chemo, I don't really feel that the "your question doesn't matter, you shouldn't be taking chemo anyway" tone of the replies is supportive. One of the most difficult things about having a friend or family member with this disease is being supportive of treatment decisions that you don't necessarily agree with. I am working through this and I know many other people that are struggling with it. This is what set me off a bit yesterday, my impression that you actually seemed indignant that a total stranger didn't take your advice without question and that you actually seemed to expect that they would. >>I don't know your real name. It could be "george" for all I know.<< Oh, my name is Barbara, you don't have to believe me, but I've been way too transparent in this group.....especially when I was using the other e-mail address. If you were inclined you are a skilled enough web searcher that you could easily find out where I work and live and most everything about me. And I feel bad that my post yesterday bugged you enough to spend the kind of time you did on it, I still appreciate what you do for the group and you are probably the first person I've run into that is a better web reseacher than me. I just think by way of "constructive criticism", that if someone with a stage 4 cancer reports positive progress with chemo that the more supportive approach might be to bite your tongue and say "that's great, good luck with that" rather than "you know it isn't going to help, you shouldn't be doing it". It might interest you to know that I'm the "you" of the acor group, everyone is very intent on finding curative chemo or altie treatments and I always seem the one to post things like "your chance for cure is slim, you might want to think twice about this treatment that will knock you out flat for a year" or " There is no soup that cures this cancer, don't waste your money" and I sometimes take a little flak myself for this. Barbara > However, I have felt lately that your and Steph's strong opinions > against chemo for late stage cancer have chased people away from what [quoted text clipped - 4 lines] > chemo, I don't really feel that the "your question doesn't matter, you > shouldn't be taking chemo anyway" tone of the replies is supportive. Just for the record, I do not have strong opinions against chemo - just inappropriate treatment, be it chemo, radiation or surgery. That's the whole point of my "questions to ask". If I had a "late stage" non Hodgkin's lymphoma or testicular cancer, I'd be queuing at the door for my chemo. I continue to be disappointed when people miss the point, and a bit offended when accused of something I'm not guilty of, as in your post, Barbara. > > However, I have felt lately that your and Steph's strong opinions > > against chemo for late stage cancer have chased people away from what [quoted text clipped - 11 lines] > I continue to be disappointed when people miss the point, and a bit offended > when accused of something I'm not guilty of, as in your post, Barbara. Steph FWIW this is one new reader who took the algorithm as you intended and thought it useful. LB |
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