Guest guest Posted July 24, 2008 Report Share Posted July 24, 2008 Welcome to the club no one wants to join. I think I might have some suggestions for you that will help you to make well-informed decisions. Anecdotes contributed by other patients can be interesting, but should never, ever, be relied upon as authority for one's own decisions. In other words, what helps me might harm you and vice versa. There is a lot to do, but considering the numbers, apparently time to do it. (1) If applicable, I recommend having the biopsy specimens examined by a pathology lab that specializes in prostate cancer (PCa). Everything that is done from here on depends upon the accuracy of the Gleason scoring. Here is a list: Bostwick Laboratories [800] 214-6628 Dianon Laboratories [800] 328-2666 (select 5 for client services) Jon Epstein (s Hopkins) [410] 955-5043 or [410] 955-2162 Grignon (Michigan) [313] 745-2520 Jon Oppenheimer (Tennessee) [888] 868-7522 UroCor, Inc. [800] 411-1839 This is a " second opinion " and should be covered by insurance/Medicare. The cost, last I heard, was about $350. More if further tests are ordered. The chosen lab can give instructions on shipment arrangements. In civilized jurisdictions, those specimens are the property of the *patient* and not the medic, not the lab. Sometimes it is necessary to educate them on that point. (2) The authoritative website of the Prostate Cancer Research Institute (PCRI) at http://prostate-cancer.org/index.html is an excellent beginning. Some medics who specialize in treatment (tx) of PCa are listed via this portal: http://prostate-cancer.org/resource/find-a-physician.html (3) I heartily recommend this text on PCa: _A Primer on Prostate Cancer_ 2nd ed., subtitled " The Empowered Patient's Guide " by medical oncologist and PCa specialist B. Strum, MD and PCa warrior Donna Pogliano. It is available from the PCRI website and the like, as well as Amazon (30+ five-star reviews), & Noble, and bookstores. A lifesaver, as I very well know. (4) Personal contact with other patients can be very helpful. Local chapters of the international support group Us Too can be found via their website at http://www.ustoo.com/chapter_nearyou.asp 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. " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2008 Report Share Posted July 24, 2008 Hi Steve, your suggestions are all good for the newly diagnosed. I do however, have a problem with the PCRI site in that it does not mention proton beam therapy as an option. The word " proton " is listed in the glossary, but that is it. As you know, I consider proton beam radiation therpay one of the best treatment options out there for localized cancer and salvage therapy following a failed surgery. The majority of men newly diagnosed will not know about the proton option, and in my opinion that is a travesty. Laurel M > > Welcome to the club no one wants to join. > > I think I might have some suggestions for you that will help you to > make well-informed decisions. Anecdotes contributed by other patients > can be interesting, but should never, ever, be relied upon as > authority for one's own decisions. In other words, what helps me might > harm you and vice versa. > > There is a lot to do, but considering the numbers, apparently time to > do it. > > (1) If applicable, I recommend having the biopsy specimens examined by > a pathology lab that specializes in prostate cancer (PCa). Everything > that is done from here on depends upon the accuracy of the Gleason > scoring. Here is a list: > > Bostwick Laboratories [800] 214-6628 > Dianon Laboratories [800] 328-2666 (select 5 for client services) > Jon Epstein (s Hopkins) [410] 955-5043 or [410] 955-2162 > Grignon (Michigan) [313] 745-2520 > Jon Oppenheimer (Tennessee) [888] 868-7522 > UroCor, Inc. [800] 411-1839 > > This is a " second opinion " and should be covered by > insurance/Medicare. The cost, last I heard, was about $350. More if > further tests are ordered. > > The chosen lab can give instructions on shipment arrangements. > > In civilized jurisdictions, those specimens are the property of the > *patient* and not the medic, not the lab. Sometimes it is necessary to > educate them on that point. > > (2) The authoritative website of the Prostate Cancer Research > Institute (PCRI) at http://prostate-cancer.org/index.html > is an excellent beginning. > > Some medics who specialize in treatment (tx) of PCa are listed via > this portal: http://prostate-cancer.org/resource/find-a- physician.html > > (3) I heartily recommend this text on PCa: _A Primer on Prostate > Cancer_ 2nd ed., subtitled " The Empowered Patient's Guide " by medical > oncologist and PCa specialist B. Strum, MD and PCa warrior > Donna Pogliano. It is available from the PCRI website and the like, as > well as Amazon (30+ five-star reviews), & Noble, and > bookstores. A lifesaver, as I very well know. > > (4) Personal contact with other patients can be very helpful. Local > chapters of the international support group Us Too can be found via > their website at http://www.ustoo.com/chapter_nearyou.asp > > 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. " > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2008 Report Share Posted July 24, 2008 Hi Steve, your suggestions are all good for the newly diagnosed. I do however, have a problem with the PCRI site in that it does not mention proton beam therapy as an option. The word " proton " is listed in the glossary, but that is it. As you know, I consider proton beam radiation therpay one of the best treatment options out there for localized cancer and salvage therapy following a failed surgery. The majority of men newly diagnosed will not know about the proton option, and in my opinion that is a travesty. Laurel M > > Welcome to the club no one wants to join. > > I think I might have some suggestions for you that will help you to > make well-informed decisions. Anecdotes contributed by other patients > can be interesting, but should never, ever, be relied upon as > authority for one's own decisions. In other words, what helps me might > harm you and vice versa. > > There is a lot to do, but considering the numbers, apparently time to > do it. > > (1) If applicable, I recommend having the biopsy specimens examined by > a pathology lab that specializes in prostate cancer (PCa). Everything > that is done from here on depends upon the accuracy of the Gleason > scoring. Here is a list: > > Bostwick Laboratories [800] 214-6628 > Dianon Laboratories [800] 328-2666 (select 5 for client services) > Jon Epstein (s Hopkins) [410] 955-5043 or [410] 955-2162 > Grignon (Michigan) [313] 745-2520 > Jon Oppenheimer (Tennessee) [888] 868-7522 > UroCor, Inc. [800] 411-1839 > > This is a " second opinion " and should be covered by > insurance/Medicare. The cost, last I heard, was about $350. More if > further tests are ordered. > > The chosen lab can give instructions on shipment arrangements. > > In civilized jurisdictions, those specimens are the property of the > *patient* and not the medic, not the lab. Sometimes it is necessary to > educate them on that point. > > (2) The authoritative website of the Prostate Cancer Research > Institute (PCRI) at http://prostate-cancer.org/index.html > is an excellent beginning. > > Some medics who specialize in treatment (tx) of PCa are listed via > this portal: http://prostate-cancer.org/resource/find-a- physician.html > > (3) I heartily recommend this text on PCa: _A Primer on Prostate > Cancer_ 2nd ed., subtitled " The Empowered Patient's Guide " by medical > oncologist and PCa specialist B. Strum, MD and PCa warrior > Donna Pogliano. It is available from the PCRI website and the like, as > well as Amazon (30+ five-star reviews), & Noble, and > bookstores. A lifesaver, as I very well know. > > (4) Personal contact with other patients can be very helpful. Local > chapters of the international support group Us Too can be found via > their website at http://www.ustoo.com/chapter_nearyou.asp > > 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. " > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2008 Report Share Posted October 23, 2008 Anyone newly diagnosed should consider watchful waiting. To learn more, visit my web site, www.watchwait.com. it has lots of studies, stories from the media, my own story, and more. Lasalandra. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2008 Report Share Posted October 23, 2008 Anyone newly diagnosed should consider watchful waiting. To learn more, visit my web site, www.watchwait.com. it has lots of studies, stories from the media, my own story, and more. Lasalandra. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2008 Report Share Posted October 23, 2008 Anyone newly diagnosed should consider watchful waiting. To learn more, visit my web site, www.watchwait.com. it has lots of studies, stories from the media, my own story, and more. Lasalandra. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2008 Report Share Posted November 11, 2008 Quoting ML: >> Anyone newly diagnosed should consider watchful waiting. To learn > more, visit my web site, www.watchwait.com. it has lots of studies, > stories from the media, my own story, and more. Lasalandra. Anyone? Even a man diagnosed (dxd) at, say, age 55 with Gleason 7, T2a, PSA 10? And comorbidities? I've checked the website and recommend caution. She wrote: > My husband was v ery recently diagnosed, after kindey failure, due to > prostate blockage, which turned out to be cancer. Had a bone scan, > which was negative. We don't have health insurance,and don't know > what to do next. We have an app't on this Fri., with the urologist. > Mrs. T. If the Ts are broke, a state/federal program called by various names that amount to Medicaid (not Medicare) is likely available and should be checked. The uro may know about it. Or explore the state's website. I know of a man here in Arizona who got the very best tx under that program. Here's my welcome: Welcome to the club no one wants to join. I have some suggestions that will help to make well-informed decisions. Anecdotes contributed by other patients can be interesting, but should never, ever, be relied upon as authority for one's own decisions. In other words, what helps me might harm you and vice versa. There is a lot to do. (1) If applicable, I recommend having the biopsy specimens examined by a pathology lab that specializes in prostate cancer (PCa). Everything that is done from here on depends upon the accuracy of the Gleason scoring. Here is a list of such labs: Bostwick Laboratories [800] 214-6628 Dianon Laboratories [800] 328-2666 (select 5 for client services) Jon Epstein (s Hopkins) [410] 955-5043 or [410] 955-2162 Grignon (Michigan) [313] 745-2520 Jon Oppenheimer (Tennessee) [888] 868-7522 UroCor, Inc. [800] 411-1839 This is a " second opinion " and should be covered by insurance/Medicare. The cost, last I heard, was about $350. More if further tests, which might be prudent, are ordered. The chosen lab can give instructions on shipment arrangements. In civilized jurisdictions, those specimens are the property of the patient and not the medic, not the lab. Sometimes it is necessary to educate them on that point. (2) The authoritative website of the Prostate Cancer Research Institute (PCRI) at http://prostate-cancer.org/index.html is an excellent beginning. See also http://prostate-cancer.org/education/education.html#newly_diagnosed Some medics who specialize in treatment (tx) of PCa are listed via this portal: http://prostate-cancer.org/resource/find-a-physician.html If a particular medic is not suitable due to distance (but there are men who travel thousands of miles for treatment) or otherwise, there is no harm and much possible gain in simply asking for a referral. There are also men whose primary medic is some distance away, but who receive their routine treatment (tx) near home. (3) I heartily recommend this comprehensive text on PCa: _A Primer on Prostate Cancer_ 2nd ed., subtitled " The Empowered Patient's Guide " by medical oncologist and PCa specialist B. Strum, MD and PCa warrior Donna Pogliano. It is available from the PCRI website and the like, as well as Amazon (30+ five-star reviews), & Noble, and bookstores. A lifesaver, as I very well know. (4) Personal contact with other patients can be very helpful. Local chapters of the international support group Us Too can be found via their website at http://www.ustoo.com/chapter_nearyou.asp Regards, Steve J " Know your enemy. Get educated. But also know that it won't be easy. It will be confusing, overwhelming and depressing. That is the nature of cancer and thus the very educational process as you regain control. " -- Young Phoenix 5 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2008 Report Share Posted November 11, 2008 Unfortunately in Virignia men with prostate cancer are not covered under Medicaid. Mrs T if in the US can contact Patient Advocate Foundation http://www.patientadvocate.org/ and Cancer Care http://www.cancercare.org/ If a Veteran contact your closest VA immediately to start the process. If you are unsucessful with all of the above take all your documentation of calls and meetings to the office of your local congressman. Kathy From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Steve JordanSent: Tuesday, November 11, 2008 3:59 PMTo: ProstateCancerSupport Subject: Re: Re:For the New Folks Quoting ML:>> Anyone newly diagnosed should consider watchful waiting. To learn> more, visit my web site, www.watchwait.com. it has lots of studies, > stories from the media, my own story, and more. Lasalandra.Anyone? Even a man diagnosed (dxd) at, say, age 55 with Gleason 7, T2a,PSA 10? And comorbidities?I've checked the website and recommend caution.She wrote:> My husband was v ery recently diagnosed, after kindey failure, due to> prostate blockage, which turned out to be cancer. Had a bone scan, > which was negative. We don't have health insurance,and don't know > what to do next. We have an app't on this Fri., with the urologist. > Mrs. T.If the Ts are broke, a state/federal program called by various namesthat amount to Medicaid (not Medicare) is likely available and should bechecked. The uro may know about it. Or explore the state's website.I know of a man here in Arizona who got the very best tx under that program.Here's my welcome:Welcome to the club no one wants to join.I have some suggestions that will help to make well-informed decisions.Anecdotes contributed by other patients can be interesting, but shouldnever, ever, be relied upon as authority for one's own decisions. Inother words, what helps me might harm you and vice versa.There is a lot to do.(1) If applicable, I recommend having the biopsy specimens examined bya pathology lab that specializes in prostate cancer (PCa). Everythingthat is done from here on depends upon the accuracy of the Gleasonscoring. Here is a list of such labs:Bostwick Laboratories [800] 214-6628Dianon Laboratories [800] 328-2666 (select 5 for client services)Jon Epstein (s Hopkins) [410] 955-5043 or [410] 955-2162 Grignon (Michigan) [313] 745-2520Jon Oppenheimer (Tennessee) [888] 868-7522UroCor, Inc. [800] 411-1839This is a "second opinion" and should be covered by insurance/Medicare.The cost, last I heard, was about $350. More if further tests, whichmight be prudent, are ordered.The chosen lab can give instructions on shipment arrangements.In civilized jurisdictions, those specimens are the property of thepatient and not the medic, not the lab. Sometimes it is necessary toeducate them on that point.(2) The authoritative website of the Prostate Cancer ResearchInstitute (PCRI) at http://prostate-cancer.org/index.htmlis an excellent beginning.See also http://prostate-cancer.org/education/education.html#newly_diagnosedSome medics who specialize in treatment (tx) of PCa are listed viathis portal: http://prostate-cancer.org/resource/find-a-physician.htmlIf a particular medic is not suitable due to distance (but there are menwho travel thousands of miles for treatment) or otherwise, there is noharm and much possible gain in simply asking for a referral.There are also men whose primary medic is some distance away, but whoreceive their routine treatment (tx) near home.(3) I heartily recommend this comprehensive text on PCa: _A Primer onProstate Cancer_ 2nd ed., subtitled "The Empowered Patient's Guide" bymedical oncologist and PCa specialist B. Strum, MD and PCa warriorDonna Pogliano. It is available from the PCRI website and the like, aswell as Amazon (30+ five-star reviews), & Noble, andbookstores. A lifesaver, as I very well know.(4) Personal contact with other patients can be very helpful. Localchapters of the international support group Us Too can be found viatheir website at http://www.ustoo.com/chapter_nearyou.aspRegards,Steve J"Know your enemy. Get educated. But also know that it won't be easy. Itwill be confusing, overwhelming and depressing. That is the nature ofcancer and thus the very educational process as you regain control."-- YoungPhoenix 5 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2008 Report Share Posted November 11, 2008 > Unfortunately in Virignia men with prostate cancer are not covered > under Medicaid. What!? OMG, what is the supposed justification for that atrocity? Does the program cover BCa? HIV? Pregnancy & childbirth? Mental illness? Vision and corrective lenses? Dental health? Not many things shock me any more, but this did the job..... Regards, Steve J Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2008 Report Share Posted November 11, 2008 There was a time, when PC was only an Old Mans illness. Not found until he was 68,or 74. That's when the Doctor would say let us watch and wait. Most men their age would not survive the open type of surgery, and they had little interest in sex and their lifespan was shorter than now. When I had my surgery, the next patient was only 26. If you look at the ages of men getting this and other reproductive cancers is on the rise. To say it is a slow growing cancer does a disservice to anyone trying to understand whats happen to them. My kidney cancer, like my prostate cancer, was fast growing , very aggressive, very malignant. Found on 12-06-06, removed 01-31-07. On the day we removed my kidney, it was 98% of the kidney, inside and out, but the 2% left was still producing clear, normal urine with no blood. I had felt no pain, no discomfort. Had I waited for the blood to test in my urine, it would have been to late to do anything. I know of young men, 16 and up, who find out the have the same cancers that only our fathers or grandfathers had when they were 70 or older. If the numbers are low, a Cancer Doctor, not a GP, should make the call, and most are not waiting. Some type of treatment is tried, stop the growth and start the recovery. For whatever reasons, hormones in meat,milk, chemicals in our water, cancers are showing up at a younger age than our parents Both my grandpearents, and my Father, who died at 53, from the same type of cancer cells that I have. I was told, at 17 to test yearly for cancer and everytime I hear someone has passed due to cancer, I wonder if they just watched and waited. Thanks, otey236> My husband was v ery recently diagnosed, after kindey failure, due to> prostate blockage, which turned out to be cancer. Had a bone scan, > which was negative. We don't have health insurance,and don't know > what to do next. We have an app't on this Fri., with the urologist. > Mrs. T.If the Ts are broke, a state/federal program called by various namesthat amount to Medicaid (not Medicare) is likely available and should bechecked. The uro may know about it. Or explore the state's website.I know of a man here in Arizona who got the very best tx under that program.Here's my welcome:Welcome to the club no one wants to join.I have some suggestions that will help to make well-informed decisions.Anecdotes contributed by other patients can be interesting, but shouldnever, ever, be relied upon as authority for one's own decisions. Inother words, what helps me might harm you and vice versa.There is a lot to do.(1) If applicable, I recommend having the biopsy specimens examined bya pathology lab that specializes in prostate cancer (PCa). Everythingthat is done from here on depends upon the accuracy of the Gleasonscoring. Here is a list of such labs:Bostwick Laboratories [800] 214-6628Dianon Laboratories [800] 328-2666 (select 5 for client services)Jon Epstein (s Hopkins) [410] 955-5043 or [410] 955-2162 Grignon (Michigan) [313] 745-2520Jon Oppenheimer (Tennessee) [888] 868-7522UroCor, Inc. [800] 411-1839This is a "second opinion" and should be covered by insurance/Medicare.The cost, last I heard, was about $350. More if further tests, whichmight be prudent, are ordered.The chosen lab can give instructions on shipment arrangements.In civilized jurisdictions, those specimens are the property of thepatient and not the medic, not the lab. Sometimes it is necessary toeducate them on that point.(2) The authoritative website of the Prostate Cancer ResearchInstitute (PCRI) at http://prostate- cancer.org/ index.htmlis an excellent beginning.See also http://prostate- cancer.org/ education/ education. html#newly_ diagnosedSome medics who specialize in treatment (tx) of PCa are listed viathis portal: http://prostate- cancer.org/ resource/ find-a-physician .htmlIf a particular medic is not suitable due to distance (but there are menwho travel thousands of miles for treatment) or otherwise, there is noharm and much possible gain in simply asking for a referral.There are also men whose primary medic is some distance away, but whoreceive their routine treatment (tx) near home.(3) I heartily recommend this comprehensive text on PCa: _A Primer onProstate Cancer_ 2nd ed., subtitled "The Empowered Patient's Guide" bymedical oncologist and PCa specialist B. Strum, MD and PCa warriorDonna Pogliano. It is available from the PCRI website and the like, aswell as Amazon (30+ five-star reviews), & Noble, andbookstores. A lifesaver, as I very well know.(4) Personal contact with other patients can be very helpful. Localchapters of the international support group Us Too can be found viatheir website at http://www.ustoo. com/chapter_ nearyou.aspRegards,Steve J"Know your enemy. Get educated. But also know that it won't be easy. Itwill be confusing, overwhelming and depressing. That is the nature ofcancer and thus the very educational process as you regain control."-- YoungPhoenix 5 Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.