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Medical Forum / Diseases and Disorders / Prostate Cancer / March 2007Well I'm Officially A Charter Member.
Biopsy results were positive. 3+4 on the left, 3+3 on the right. Bone and Cat scans next. I need to get more educated before I opt for a treatment. > Biopsy results were positive. 3+4 on the left, 3+3 on the right. Bone > and Cat scans next. > > I need to get more educated before I opt for a treatment. Welcome to the club no one wants to join. There is work to be done, and Paul seems prepared to do it. My recommendations: (1) See the authoritative and objective website of the Prostate Cancer Research Institute (PCRI) at: http://prostate-cancer.org/index.html ....and go to the "Newly Diagnosed" section for excellent information. (2) Study the premier text on PCa, _A Primer on Prostate Cancer_ 2nd ed., subtitled "The Empowered Patient's Guide" by medical oncologist and PCa specialist Stephen B. Strum, MD and PCa warrior Donna Pogliano. It is available via the PCRI site, other similar sites, Amazon (30+ five-star reviews), Barnes & Noble, any bookstore. A lifesaver. (3) Get copies of all records and test results and keep them in a file. The patient has a right to these copies. The file will prove to be invaluable. (4) Consult with as many medics as possible, especially with a medical oncologist, who is above all a cancer specialist. The PCRI website lists some of the medics who specialize in PCa. (5) Do not permit anyone assert pressure for a particular treatment. There is probably plenty of time to study, learn, and take charge. Know your enemy, then make an educated decision. Good luck. Regards, Steve J "Empowerment: taking responsibility for and authority over one's own outcomes based on education and knowledge of the consequences and contingencies involved in one's own decisions. This focus provides the uplifting energy that can sustain in the face of crisis." --Donna Pogliano, co-author of _A Primer on Prostate Cancer_, subtitled "The Empowered Patient's Guide." Oops, neglected a recommendation: For expert validation, have those biopsy specimens, including the paraffin block, sent to a pathology lab that specializes in PCa. This is *vital.* Everything that is done from here on depends upon the accuracy of Gleason score. The expert may or may not change the local's score, but it is well to be as certain as one can be in this business. The cost of this second opinion is about $350, and I understand is covered by insurance and Medicare. The uro probably knows about the labs, but will not volunteer the information. The labs I know of are: Bostwick Laboratories [800] 214-6628 Dianon Laboratories [800] 328-2666 (select 5 for client services) Jon Epstein (Hopkins) [410] 955-5043 or [410] 955-2162 (Dr. Epstein does not do ploidy analysis) David Grignon (Michigan) [313] 745-2520 Jon Oppenheimer (Tennessee) [888] 868-7522 UroCor, Inc. [800] 411-1839 They will give shipping instructions. BTW, in the enlightened jurisdictions, those specimens are the property of the patient, not the medic or anyone else. Regards, Steve J "We must tailor the treatment to the nature of the disease. We must listen to the biology." -- Stephen B. Strum, MD >Oops, neglected a recommendation: > [quoted text clipped - 33 lines] >listen to the biology." >-- Stephen B. Strum, MD Steve, Thanks for the recommendations. I have visited the site, and ordered the book and am in the process of getting copies of my results etc. for my records. I have also solicited a second opinion from another urologist. He has asked for my pathology report and slides. When I went back to my first urologist, they requested that I put my request in writing. I had no issue telling them that I was soliciting a second opinon and who that Dr. is. At that time I learned that the slides were at Bostwick, so I don't think I need to resend them. I am also in the process of securing a medical oncologist, radiology oncologist and pathologist for consultation. Thanks! > Biopsy results were positive. 3+4 on the left, 3+3 on the right. Bone > and Cat scans next. > > I need to get more educated before I opt for a treatment. Let me just say that we're here for you but prefer that you didn't join this club. -kh and have as much sex as possible starting now. >> Biopsy results were positive. 3+4 on the left, 3+3 on the right. Bone >> and Cat scans next. [quoted text clipped - 5 lines] > >-kh and have as much sex as possible starting now. Thanks, but right now, I'm uncomfortable as heck in my penis and testicle area. I want to enjoy, but am too senstive. I'm hoping that I'll get my opportunity though... > Biopsy results were positive. 3+4 on the left, 3+3 on the right. Bone > and Cat scans next. > > I need to get more educated before I opt for a treatment. I suspect the charter members were cave men, or Adam/Cain/Abel, or orangutans, but who are we to question your membership qualifications? And, yes, you've got some reading to do. Even if we could or would answer your next 100 questions thoroughly and accurately, you'd still be woefully and inadequately educated because of the 100 questions you *didn't* ask. I didn't have to get educated to choose to excise my colon cancer; it was do or die, and quickly. I wouldn't have to read a book to accept some sort of heart or brain surgery if it were failing in some obvious, correctable manner. But prostate cancer is far more complicated in both treatment and aftereffects, and virtually demands significant patient involvement at every step. Time to hit the book store and *authoritative* Internet sources. There's no way around it for anyone who can type a coherent paragraph. Then discuss your findings and leanings with various oncologists. I.P. >> Biopsy results were positive. 3+4 on the left, 3+3 on the right. Bone >> and Cat scans next. [quoted text clipped - 21 lines] > >I.P. Exactly what I will do. I'd be a liar if I said I weren't afraid of making a bad decision with regards to docs and treatment. Is there a site that evaluates physicians? I'd love to see feedback on the docs. > I'd be a liar if I said I weren't afraid of > making a bad decision with regards to docs and treatment. Is there a > site that evaluates physicians? I'd love to see feedback on the docs. I knew I'd be traveling back and forth often, and live not far from a couple of major west coast cities, so I didn't bother to consider the rest of the country. Sure, Walsh wrote a book and invented nerve-sparing surgery, but he's 3,000 miles away. So I just checked the 'Net for cancer centers within commuting distance (Portland and Seattle are easy cruises), found many, then threw in more criteria to narrow things down. I phoned one, consulted uro personnel by phone and in person, asked the initial local uro who found my PC about the specific uro onc and the whole hospital and department I was considering for my surgery, got glowing reports, and went with my gut. Turns out one doesn't have to travel 3,000 miles to get uro oncs from Sloan-Kettering who wrote a PC book, perform and teach prostatectomies, do national-level research, hang with many other widely known researchers, have great records, and will spend hours talking with me. If I'd had any lingering doubts, I'd have asked some nurses in the dept., dug more thoroughly into state medical board records, etc. OTOH, I'm never going to be pad-free. My doc's fault? Guess we'll never know; he was stunned when I wasn't dry within several months, as almost all his pts are. But I'll bet Walsh, Scardino, et. al. also have some unexplained leakers. I suspect there's another nerve they've not identified yet, even though "they" deny it. I.P. > Biopsy results were positive. 3+4 on the left, 3+3 on the right. Bone > and Cat scans next. Welcome to the club, Paul!! sh.t!!! I was so sure, I didn't even write your stats down. What was your PSA? And did they give you a Gleason? Was it 46 years old? > I need to get more educated before I opt for a treatment. Yessir. You are both correct and wise. We're here for you all the way.  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 PSA <0.04, <0.05 Non Illegitimi Carborundum >> Biopsy results were positive. 3+4 on the left, 3+3 on the right. Bone >> and Cat scans next. [quoted text clipped - 3 lines] > sh.t!!! I was so sure, I didn't even write your stats down. What was > your PSA? And did they give you a Gleason? Was it 46 years old? I do remember. 45 years old and 4.7 PSA. It was Mark whom I thought would be okay. >>> Biopsy results were positive. 3+4 on the left, 3+3 on the right. Bone >>> and Cat scans next. [quoted text clipped - 7 lines] > >It was Mark whom I thought would be okay. I hope he makes out better than I have so far.... Hello, Paul: Well, that's too bad, and I'm sorry for what's in store for you. But you do have options, and time to learn about them. There are plenty of good resources; Steve Jordan mentioned a couple. Lots of the leading hospitals have good, informative pages, although obviously they will promote themselves. The National Cancer Institute's site is very helpful. Take a look at Scardino's book, too. I recently bought Prostate Cancer for Dummies, and was pleasantly surprised by it, plain language, and pretty evenly balanced in the surgery/radiation debate. I guess it was really written for a dummy like me :-). Good luck with this, and please keep us all informed about how things go. All the best, charlie > I recently bought Prostate > Cancer for Dummies, and was pleasantly surprised by it, plain > language, and pretty evenly balanced in the surgery/radiation debate. > I guess it was really written for a dummy like me :-). And written *by* a large team of oncologists including all specialties. Lange, its cover author, heads the dept of uro surg at Seattle's University of Washington, but he enlisted many of the U's docs to contribute to it. I.P. >Hello, Paul: > [quoted text clipped - 17 lines] > >charlie Thanks Charlie, I'm a real "dummie", so I'll get that book and Scardino's as well. > Thanks Charlie, I'm a real "dummie", so I'll get that book and > Scardino's as well. I bought a dozen PC books, read sections of a few more in the bookstore, and felt every one of them added measurably to the validity and conviction my two PC decisions regarding initial and adjuvant treatment. Many of the chapters I've not even read yet, as my cancer hasn't progressed to their stages yet. I.P. > Biopsy results were positive. 3+4 on the left, 3+3 on the right. Bone > and Cat scans next. > > I need to get more educated before I opt for a treatment. Under Key Posts (right hand column on my blog) check out: - the Free Downloadable Materials on Prostate Cancer post. I scoured the net for these and have posted links to the best ones. - the Case Histories post which will take you to literally hundreds of case histories so you can find out precisely what happened to others that had the treatments you are considering - Prostate Cancer Calculators post which will take you to web pages that let you input your lab data and get out prognoses. Also network with as many people as you can who have had treatment as soon as possible in case you are interested in contacting their surgeon/rad onc and set up interviews with a surgeon, rad onc and med onc (the last one should have no bias between surgery and radiation). The Community Resources link (also under Key Posts) will point you to support groups that may be helpful in locating patients. Also, there is a Feb 2006 post on my blog entitled Questions to Ask the Doctor with links to sets of questions to ask the doctors once you see them. Hope this helps you get started. --- The Palpable Prostate http://palpable-prostate.blogspot.com >> Biopsy results were positive. 3+4 on the left, 3+3 on the right. Bone >> and Cat scans next. [quoted text clipped - 31 lines] >The Palpable Prostate >http://palpable-prostate.blogspot.com Thank you. Hey P Sorry to hear your news. I'm less than 18 months from when my biopsy results came back positive so I remember the state of mind well. I didn't have my RP for another 6 weeks. I went through stages of frantic info searching, frantic referral mode, frantic querying of other patients trying to find the best treatment for me. I interviewed the four 'top' urologists in my insurance group. They all want to do a DRE (digital rectal exam) after the third one I said nope, I know I have pCa. You sticking your finger up my butt is not going to change that. He got indignant with my refusal and he for sure was eliminated from my list. That interview process was very important. Radio's (radiologist) want to seed (radioactive seed implant) and Uros (urologist) want to cut (surgical prostatectamy). I did talk to a radio that had his prostate cut so go figure. Actually, that is partly what convinced me to have a Radical Prostatectamy. Eventually, you will come to a decision, and then you will doubt that decision, but you have to 'believe' in that decision and not look back. Those goddam forks in the road will drive you nuts every time. Something else. Eventually you will change your diet because this new 'country' you are now in has a different way of eating. I think one of the best sites for everyting prostate including diet is: www.psarising.com. No, thats second best. The best site I've found is right here in alt.support.cancer.prostate. And lastly, as long as you're here, bring your funny game. We all love a good joke in this group. He who laughs, lasts. WhiteSoxFan > Hey P > [quoted text clipped - 25 lines] > >WhiteSoxFan Thanks WSF, you really summed up where I'm at right now. Early indications are that I'd prefer robotic surgery but I haven't done all of my diligence quite yet, and of course I'm second guessing everything I do right now, wondering if I'll destroy the remainder of my life with a poor decision. As for the eating, I am only slightly overweight, in no small part to the fact that my wife is a renal dietitian / nutritionist. She's kept me pretty honest and if I didn't eat behind her back at business dinners etc. I'd be a lot healthier. P.s. The link for psarising.com isn't coming up. On March 22, Paul replied to WSF, in pertinent part: > P.s. The link for psarising.com isn't coming up. The correct link is: http://www.psa-rising.com/ Jacquie Strax is the widow of a PCa brother. She has devoted herself to helping us. She is one of the female PCa warriors. All honor to her and her like. Regards, Steve J > Thanks WSF, you really summed up where I'm at right now. Early > indications are that I'd prefer robotic surgery but I haven't done all > of my diligence quite yet, and of course I'm second guessing > everything I do right now, wondering if I'll destroy the remainder of > my life with a poor decision. My first choice was to go with DaVinci but my insurance group doesn't have it yet or if they do I would have been one of the first couple of dozen and I diddn't want to be a test dummy. I would have gone with the U of Chicago medical team but my Blue Cross Blue Sheld of Illinois HMO doesn't extend to that hospital. With all that I've read after my RP including recent stuff hinting that perhaps its the biopsy that creates an inflamation of the PC cells that are cut that causes them to freak out and go hide somewhere else in our bodies before the RP so that even though everything comes out "clean" those "smart" ones lay low for months to years before they do their little "ta-daaah, I'm baaaack" routine, hints at my "poor decision" to get a biopsy. Assuming I have "smart ones" hiding, and I do assume that, my first line of defense is to keep em at bay with food, excercise and the combigned yet edited by me, wisdom of everyone else in this game. Although, without the biopsy, how will I know that steps need to be taken to "fight the beast?" Ahhhhgh, damned if I do and damned if I don't. The poorest decision you can make is to bemoan your fate. You don't know if the trip to the hospital you will be taking in a month or so prevented you from driving to work that morning, avoiding the drunk driver that ran the red light. I better stop now or I'll go on and on with philosophical babble till the cows come home. WSF >With all that I've read after my >RP including recent stuff hinting that perhaps its the biopsy that >creates an inflamation of the PC cells that are cut that causes them >to freak out and go hide somewhere else in our bodies before the RP... Please post references to support this "finding." > >With all that I've read after my > >RP including recent stuff hinting that perhaps its the biopsy that > >creates an inflamation of the PC cells that are cut that causes them > >to freak out and go hide somewhere else in our bodies before the RP... > > Please post references to support this "finding." My rad doc said that's "suspected" by some but the evidence is not solid. Essentially, there have been cases where Mets "seem" to correlate with the biopsy. There are too few cases to add up to statistical evidence. It might just be bad luck. -kh > > >With all that I've read after my > > >RP including recent stuff hinting that perhaps its the biopsy that [quoted text clipped - 11 lines] > > -kh I googled inflammation and metastasis. This is one of the sites that is publishing the article I read. http://www.physorg.com/news93630643.html WSF > Early > indications are that I'd prefer robotic surgery but I haven't done all > of my diligence quite yet, and of course I'm second guessing You may wish to look at these Surgery posts: http://palpable-prostate.blogspot.com/search/label/Surgery The first four form a 4-part series comparing open, laparascopic & robotic surgery. They include links to recent reviews of each and comparisons and a few surgeon sites. That is followed by posts on a selection of recent surgery topics: Lymph Node Dissection, Inginual Hernia and Seminal Vesicle ablation. --- The Palpable Prostate http://palpable-prostate.blogspot.com > sites for everyting prostate including diet is:www.psarising.com. This link doesn't work. Correct one is psa-rising.org. L. |
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