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Medical Forum / Diseases and Disorders / Prostate Cancer / September 2006Comparing side effects
Some general words of advice to those evaluating treatment options: - Don't pay too much attention to the SE rates quoted here or elsewhere on the Internet. What you want are the figures for the team that will be treating you. If the doctors you are talking to can't give you convincing figures over a reasonable large population (hundreds) of patients they have treated, take your business elsewhere. You want to know that your doctor keeps statistics of the outcomes of what they are doing and does long-term follow-ups; don't be afraid to ask some pretty direct questions about that. - Don't compare apples to oranges. IOW, don't automatically go with the doctor who offers the best-sounding percentages. When a doctor says "x% of my patients will have ED after treatment", demand their definition of ED. Most lay people would say ED means any noticeable difficulty in getting and keepin an erection unaided, but some doctors who treat PCa twist that so that anyone who can get an erection using pills is excluded from their numbers. Similarly for incontinence - some doctors consider anyone who leaks a few drops from time to time, but doesn't need to wear pads is "continent", others take a stricter view. If different doctors are using different definitions, the percentages can't be compared, so ask them to give you numbers for the definitions you personally are comfortable with. - Ask your questions in a calm and rational way. The last thing you want is to convince the doctors that you are an obsessive worrier. You need to give the impression of someone who is gathering all the facts in a businesslike way in order to make a rational decision - that will get you respect and better quality answers. Doctors who won't answer questions like these are doctors you don't want to treat you. The good news is that (anecdotally, at least) good surgeons and radiation oncologists seem to be getting much better results in terms of SEs than the generic figures you see quoted in newspaper articles, etc. Finally, always remember that curing the PCa is the most important thng of all. As my surgeon said to me "nerve-sparing surgery does not mean cancer-sparing surgery - if I believe that the nerve bundles are involved, I will always take them out". So choose the treatment that will give you the best chance of freedom from PCa, not the one that has a few percent better chances on the SE front, far less the one that will save you two days in hospital or a long drive to a good radiation facility.  SignaturePeter Headland Excellent advice. May I add that taking a list of questions with you to the doctor's office is most helpful. If you make the list of questions and leave space between each question it gives room to write the answer. Don't always count on your memory. This way we are sure that we have all of our questions answered and we have the answers. Often a doctor will throw us a curve ball and somehow the rest of our questions fly out the window if we don't have them in front of us. And never be afraid to ask the doctor to repeat an answer or comment! Bev > Some general words of advice to those evaluating treatment options: > [quoted text clipped - 40 lines] > will save you two days in hospital or a long drive to a good radiation > facility. > Some general words of advice to those evaluating treatment options: > [quoted text clipped - 3 lines] > convincing figures over a reasonable large population (hundreds) of > patients they have treated, take your business elsewhere. [snip] I often wonder what planet people live on who give this type of advice and how I can relocate there :-) Apparently, on that planet, patients are in short supply and an overabundance of doctors compete for their business, like the bankers on that TV commercial. And, if you have exhausted the Doctors in your local area, why, just jump on a plane to say, anywhere, and find one that suits you. Meanwhile, here on planet Earth, where I live, most practices are so booked that it takes months to even get an appointment (if they are even taking new patients). When you get there, you usually wait for perhaps an hour or two past your appointment time, go through your story with a disinterested automaton masquerading as a nurse, repeat your story to a trainee, and then finally get to spend maybe 15 minutes with "his honor". None of them keep anything like verifiable "statistics" unless you count "I have good success with that" or "that's usually not a big problem"... and if even if they do have such data, few would be willing to hand it out. I'm not even sure it wouldn't violate some kind of AMA ethics to do so. And then there is the usual advice to find a "good" one. As if there were any objective criteria available to the average person to make such a judgment. The best you can probably hope for is to avoid a "bad" one. It all seems to boil down to psychological comfort rather than any objective set of criteria. There are probably cases where given enough time and money one can assure one's self of getting the best medical care available (and even then it's a craps shoot). But for the majority of us peons, it's cross your fingers and hope. SignatureGlowing in the Dark Well my planet is San Francisco, and I experienced absolutely none of the annoyances you seemed to have. Quite the contrary. Appointments were easy to make (within a week or two) the doctors and nurses were extremely nice, explaining everything I wanted to know (sometimes repeatedly), sent me to other doctors for opinions on different kinds of treatment (surgery, seeds, radiation, etc.), told me about their past experiences, and helped me make a decision. I don't think I'm an exception from what I have read about others' experiences on this board. So what planet are you on? >> Some general words of advice to those evaluating treatment options: >> [quoted text clipped - 43 lines] > and > hope. > I often wonder what planet people live on who give this type of advice and > how I can relocate there :-) San Francisco area + a good PPO worked for me. None of the troubles you describe. Assuming you live in the USA, be happy - go back and read the posts by the UK folks if you want to know what real hassle looks like. SignaturePeter Headland >> I often wonder what planet people live on who give this type of advice >> and [quoted text clipped - 5 lines] > Assuming you live in the USA, be happy - go back and read the posts by > the UK folks if you want to know what real hassle looks like. Peter, terrific job! One additional suggestion: Bring along a tape recorder when you talk to your doctor, and ask him/her if it is OK for you to use it so you can listen to it later. Talking about prostate cancer treatment options shortly after you are diagnosed does not exactly promote a state of calm. Having a tape to listen to later means you can catch all the stuff that went in one ear and out the other while you were sitting in the doctor's office, wondering what you'll look like in a coffin or what life will be like without sex or dry underwear. (g) The doc my wife and I saw for a consultation asked if we wanted a tape. We said yes, and he switched on a video camera; when we left he handed us a VHS tape of the entire (lengthly, detailed) discussion! Alex > Assuming you live in the USA, be happy - go back and read the posts by > the UK folks if you want to know what real hassle looks like. We guessed that right away, but then most of my PC care has also been in a socialized care system -- the U.S. VA system -- so I might have expected more similarity. I.P. >> - Don't pay too much attention to the SE rates quoted here or elsewhere >> on the Internet. What you want are the figures for the team that will [quoted text clipped - 11 lines] > a disinterested automaton masquerading as a nurse, repeat your story to a > trainee, and then finally get to spend maybe 15 minutes with "his honor". Each of the > half-dozen uros and oncs I consulted with took me just days to see, and spent as much time with me as I wanted -- some discussions have run way over an hour, and I never felt rushed. I took pages of questions to each consult, and all were answered as well as current medical knowledge allowed. They've responded quickly and thoroughly to my e-mails, and phone me if necessary. And the only people who have wanted more data than "I have Gleason 8 PC" have been those uros and oncs; their assistants want only BP, pulse, and temp, plus a questionnaire or two very early in the game. I.P. > ... Meanwhile, here on planet Earth, where I live, most > practices are so booked that it takes months to even get an appointment (if > they are even taking new patients). When you get there, you usually wait for > perhaps an hour or two past your appointment time, go through your story with > a disinterested automaton masquerading as a nurse, repeat your story to a > trainee, and then finally get to spend maybe 15 minutes with "his honor". ... I'm afraid that I live on the same planet as you Glowing. But I have experienced occasional trips through the worm hole into prompt medical care. I envy the folks for whom everything happens fast. Maybe it's my HMO. I'm with Kaiser Permanente. They're the highest rated HMO in my area, and some of their doctors and consultants are good, some are just so so, but their member services suck and their ability to schedule appointments, report lab results, forward medical records, or do anything like that prompty must rank at the bottom of the charts. > None of them keep anything like verifiable "statistics" unless you count "I > have good success with that" or "that's usually not a big problem"... and if > even if they do have such data, few would be willing to hand it out. I'm not > even sure it wouldn't violate some kind of AMA ethics to do so. I'm convinced that none of the doctors I've ever seen keeps statistics, much less accurate statistics, on the results they have achieved. Further, they use the HIPPA protections on patient privacy as a shield to hide behind - refusing to give any information about their succes rates. I was in a radiation clinical trial at the National Cancer Institute. Many of the men in my trial experienced a high degree of PSA "bounce" after HDR brachytherapy. Not knowing whether the trial technique was causing this or not, one of the doctors called the four leading clinics in the country for HDR brachytherapy and asked if they could tell him if they had bounce statistics. None did. He then asked if he could compile them. He offered to fly to their sites, look at their records, and compile the statistics himself. Every one of the four refused. They cited patient confidentiality as the reason, but that is absurd given that this is another doctor, that patient names need not have been shown and wouldn't have been collected in any case, and that the results were clearly for the benefit of all radiation patients. > And then there is the usual advice to find a "good" one. As if there were > any objective criteria available to the average person to make such a > judgment. The best you can probably hope for is to avoid a "bad" one. It > all seems to boil down to psychological comfort rather than any objective set > of criteria. I agree that statistics won't help because they are false or unavailable. However recommendations from other patients, and especially from other doctors and nurses - if you can get them, can help identify the good ones. > ... But for the majority of us peons, it's cross your fingers and hope. As the statisticians say, on average, we get average care - which ain't all that good. Alan Good post Peter. I concur and I must say, everyone of the docs was very professional and competent. Lots of treatment choices in which to choose from. I'm in the Ft. Lauderdale area by the way. Now watch, my winnie will fall off tonight. ;) B.A. > Good post Peter. I concur and I must say, everyone of the docs was > very professional and competent. Lots of treatment choices in which to > choose from. I'm in the Ft. Lauderdale area by the way. I'm in Phoenix, Aridzona. After I fired my uro and later my rad onc, I hooked up with a med onc. She spent a long time with me at our first appt, immediately ordered certain meds and bloodwork. From time to time, I provide her with info I've found. Last time it was another med onc's rationale for taking pts off Proscar and putting them on Avodart. She sent me a nice note of thanks. She even gave me a homework assignment to review and report on bone turnover markers and whether there might be a better marker than Pyrilinks-D for monitoring osteoclast activity. I was amazed that a medic would do such a thing, and did my best to give her a complete and evidence-based report. BTW, there are other tests, but it appears that Pyrilinks-D is best for periodic monitoring. Whenever we meet, I always have an agenda in hand and give her a copy. > Now watch, my winnie will fall off tonight. ;) Ech. No thanks, I'd rather not watch :-( Regards, Steve J "He is the best physician who is the most ingenious inspirer of hope." -- Samuel Taylor Coleridge > She even gave me a homework assignment to review and report on When I was complaining about night-time cramps in my legs, my rheumatologist gave me a similar homework assignment: what is the origin of the term "charley horse." <g> That's very thorough, Steve. You are fortunate to have her. Thanks for the additional info too...should I ever need it. B.A. Hello Peter, I met you, it takes time. Dr. Brooks is the best. Yes, it took me 2 years....to get erection, and Viagra really works. Thought it did not.... After time, and low dose, it helped me... Remember I was on injection, "Prostaglandin" I tried all avenues, and now do great with little viagra, Keep trying. James D Brooks is great.. Just me. o.o6 or less last test.. > Some general words of advice to those evaluating treatment options: > [quoted text clipped - 40 lines] > will save you two days in hospital or a long drive to a good radiation > facility. > Some general words of advice to those evaluating treatment options: > [quoted text clipped - 24 lines] > facility. > > -- Truly words of wisdom. My own experience: talking to surgeons is like taking a course in Fuzzy Math. You must ask for -- insist on -- complete "transparency." Then consult some external sources for some objective info. Examples: (After you have been quoted every conceivable stat): Q: What is your rate of positive margins? A: (Blushing.) Now why would you want to know THAT? Q: Your assistant mentioned that you've done 500 surgeries... A: Well, I've assisted... Q: What is your ED rate after nerve-sparing surgery? A: About 15%, but for you, lower. This is because you are relatively young, don't smoke, are in good physical shape and are able to function pre-op. Reality: Post-op ED specialist: "The benefits of nerve-sparing are indeed real but they are often exaggerated." However, as Peter points out, getting rid of the cancer is the main thing This sure helps lessen the pain of any side effects. A year after my husband's surgery we are happy with the results. Nevertheless this question eats at me every day: "Is it a good thing to fudge statistics in favor of the patient so as to encourage him?" The downside is, if you are told that something will almost certainly not happen to you (like ED) and it does, you feel unprepared and betrayed. I lean toward the "Japanese" way myself but I think it depends on the patient. Leah > Some general words of advice to those evaluating treatment options: > > - Don't pay too much attention to the SE rates quoted here or elsewhere > on the Internet. Ne'er were truer words said. I imagine aspirin can kill some people. Example: I asked my doc about Fozomax and jaw degeneration. Answer: Absolutely! Rare has hen's teeth and I've never seen an actual case, but it has happened. SE's happen; but sometimes not. SignaturePSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05, 2/06, 6/06 PSA .07 .05 .06 .09 .08 .132 .145 Casodex added daily 07/06 Non Illegitimi Carborundum > Example: I asked my doc about Fozomax and jaw degeneration. Answer: Absolutely! Rare > has hen's teeth and I've never seen an actual case, but it has happened. > > SE's happen; but sometimes not. Interesting example. This may be happening to my wife. Her doctors can't explain the problems she's having in her mouth but insist it must not be Fossamax because that's so rare. However she's decided to get off it anyway. Alan >> Example: I asked my doc about Fozomax and jaw degeneration. Answer: >> Absolutely! Rare has hen's teeth and I've never seen an actual case, but [quoted text clipped - 6 lines] > her mouth but insist it must not be Fossamax because > that's so rare. However she's decided to get off it anyway. Since I was using it as an example, I did not go into the rest of his reply. He did say that patients having chemo or significant dental work done are slightly more at risk. SignaturePSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05, 2/06, 6/06 PSA .07 .05 .06 .09 .08 .132 .145 Casodex added daily 07/06 Non Illegitimi Carborundum >> Example: I asked my doc about Fozomax and jaw degeneration. Answer: Absolutely! Rare >> has hen's teeth and I've never seen an actual case, but it has happened. [quoted text clipped - 5 lines] > her mouth but insist it must not be Fossamax because > that's so rare. I understand about hoofbeats and horses and zebras, but zebras DO exist. One of my docs thinks my joint and muscle pain is not caused by statins because that SE is rare . . . but rare in this case means there are "only" a few hundred thousand cases of statin-induced joint and muscle pain -- and it's now emerging that statins cause joint and muscle pain in a LARGE percentage, maybe a majority, of athletes. I'd start examining the zebra in your wife's case; a jaw is a terrible thing to waste. I.P. >>> Example: I asked my doc about Fozomax and jaw degeneration. Answer: Absolutely! >>> Rare has hen's teeth and I've never seen an actual case, but it has happened. [quoted text clipped - 13 lines] > > I'd start examining the zebra in your wife's case; a jaw is a terrible thing to waste. Yep. She's off it now. The doc says if the Fossamax was causing it, which he refuses to believe, it will take more than six months for it to go away. That's okay by us. We're off it permanently. In researching this my wife discovered that bone mass is increased by Fossamax but the incidence of hip fracture, one of the great dangers of osteoporosis, is not reduced. The best way to prevent hip fracture is not to fall. The biggest cause is poor balance, weak muscles, and lack of coordination - all of which can be improved by exercise. Alan > The best way to prevent hip fracture is not to fall. The > biggest cause is poor balance, weak muscles, and lack > of coordination - all of which can be improved by exercise. Very specific exercise, under the tutelage of a professional trainer of some sort. The biggest single threat is atrophied hip flexors, common in middle-aged people. I.P. > Interesting example. This may be happening to my wife. > Her doctors can't explain the problems she's having in > her mouth but insist it must not be Fossamax because > that's so rare. However she's decided to get off it anyway. From the Fosamax patient insert: Severe bone, joint, and/or muscle pain has been reported in patients taking, by mouth, drugs used to treat osteoporosis. This group of drugs includes Fosamax. Most of the patients were postmenopausal women Patients have had jaw problems associated with delayed healing and infection, often following tooth extraction. TMJ - the jaw problem - has resulted in daily display ads from law firms in major newspapers. This looks like the next Vioxx lawsuit boom. |
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