Guest guest Posted October 11, 2009 Report Share Posted October 11, 2009 NEW POSTS http://www.yananow.net/Mentors/TerryC2.htm TERRY CROOK - has decided on RALP (Robotic Assisted Laparoscopic Prostatectomy) after some less than good http://www.yananow.net/Mentors/DonT.htm DON TAB Silver contributor diagnosed in 2001, he had surgery which was not successful, followed by EBRT and ADT. http://www.yananow.net/Mentors/DelM.htm DEL MANCUSO newly diagnosed and leaning towards IMRT (Intensity Modulated Radiation Therapy) http://www.yananow.net/Mentors/P2.htm ROBERT P newly diagnosed and undecided http://www.yananow.net/Mentors/S.htm JEFFREY SAUSER newly diagnosed and has chosen IMRT (Intensity Modulated Radiation Therapy) and Brachytherapy http://www.yananow.net/Mentors/AllisterM.htm ALLISTER MURPHY diagnosed with extensive metastases in 2008, now in a clinical trial http://www.yananow.net/Mentors/SteveS5.htm STEVE S - lives in Okinawa, Japan and has decided on Proton Beam in Japan with adjuvant ADT (Androgen Deprivation Therapy) http://www.yananow.net/Mentors/StanL.htm] STAN L - has decided to take the Active Surveillance. Route, despite a lack of support for his choice http://www.yananow.net/Mentors/B.htm JEREMY BACON - has decided on HIFU (High Intensity Focused Ultrasound) http://www.yananow.net/Mentors/H.htm KEVIN HORN - has decided on RALP (Robotic Assisted Laparoscopic Prostatectomy) UPDATES http://www.yananow.net/Mentors/W.htm GREGORY WILLIAMS - identifies himself as African-American (although he prefers the term black) is very happy that there are no signs of PCa after failed RALP (Robotic Assisted Laparoscopic Prostatectomy) treated with EBRT (External Beam Radiation Therapy) and ADT (Androgen Deprivation Therapy) http://www.yananow.net/Mentors/TimC2.htm TIM CASTLEMAN – on ADT (Androgen Deprivation Therapy) ahead of PBT (Proton Beam Therapy) at Loma http://www.yananow.net/Mentors/PhilC.htm PHIL C - had Surgery in August last year PSA and continence fine, but still has ED problems http://www.yananow.net/Mentors/C2.htm JOHN COLEMAN – diagnosed in 1998, this Gold One Star member has beaten all forecasts for his demise and is still on intermittent ADT (Androgen Deprivation Therapy) http://www.yananow.net/Mentors/S.htm JAMES SANFORD - PSA down again and he feels he made a better choice – EBRT (External Beam Radiation Therapy) than his brother who chose surgery http://www.yananow.net/Mentors/H.htm GEORGE HARDY - diagnosed in 2005 with a T4 PSA 185.0 ng/ml he has been off his ADT two years now and has a strong message about depression and mental issues http://www.yananow.net/Mentors/BillJ.htm BILL JORDAN - coming up to three years after his RALP (Robotic Assisted Laparoscopic Prostatectomy) he is aiming to have a penile implant to see if he can finally deal with ED http://www.yananow.net/Mentors/H.htm TIMOTHY HOTUJEC - Silver Mentor concerned by a PSA rise to 0.70 after surgery and ADT (Androgen Deprivation Therapy) his bone scan was negative for metastasis http://www.yananow.net/Mentors/P.htm RICHARD PERBIX another Silver mentor who had failed RALP (Robotic Assisted Laparoscopic Prostatectomy) followed by EBRT (External Beam Radiation Therapy) and Brachytherapy http://www.yananow.net/Mentors/GregJ.htm LUCKY CANUCK had his RALP (Robotic Assisted Laparoscopic Prostatectomy) last month and everything is working http://www.yananow.net/Mentors/ErnestF.htm ERNEST FRANK Silver member went 8 years on Active Surveillance before deciding on IMRT (Intensity Modulated Radiation Therapy) and ADT (Androgen Deprivation Therapy) http://www.yananow.net/Mentors/G.htm ERIC GAMBLE one of a handful of Platinum members, diagnosed in 1994 at age 70 with a GS 9 tumour http://www.yananow.net/Mentors/RoyW.htm ROY WHITE - diagnosed last year with a PSA of 7,000, GS 10, T4 disease, his PSA is now 4.6 after ADT (Androgen Deprivation Therapy) http://www.yananow.net/Mentors/I.htm GARY I - a week out of his EBRT (External Beam Radiation Therapy) he is happy with his choice All the best Terry Herbert I have no medical qualifications but I was diagnosed in ‘96: and have learned a bit since then. My sites are at www.yananow.net and www.prostatecancerwatchfulwaiting.co.za Dr “Snuffy” Myers : " As a physician, I am painfully aware that most of the decisions we make with regard to prostate cancer are made with inadequate data " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2009 Report Share Posted November 15, 2009 Terry Herbert wrote: > Thought you might be interested that there are over 780 stories on site now, > most of them ‘live’ with updates within the last 18 months. Last time I > checked, the relevant numbers were: RALP (Robotic Assisted Laparoscopic Surgery)- 249 (33%) Surgery – 184 (24%) ADT (Androgen Deprivation Therapy) – 90 (12%) EBRT (External Beam Radiation Treatment) - 57 (8%) Active Surveillance - 54 (7%) Proton Beam – 48 – (6%) Brachytherapy - 37 – (5%) HIFU (17) – (2%) Undecided – 16 (2%) Cryotherapy - 5 (1%) That is fascinating information. The number of HIFU and cryotherapy patients (3%) is larger than I would have expected, though perhaps the HIFU patients are in Europe, where it is more popular than elsewhere. The number of radiation patients is less than I would have expected, accounting for only 19% total. That is in spite of the many recent developments in radiation. The Active Surveillance group is also smaller than I would have expected. Surgery is still the favorite treatment at 57% total. The greater popularity of RALP over open surgery is probably new in just the last five years, but it wouldn't surprise me if, five years from now, it's almost all RALP. If nothing else, the high tech appeal is much greater than for open surgery. If we were to ask men why they chose surgery over all other modalities, I speculate that the number one reason would be, " I want it OUT! " I have a cousin who is a medical oncologist who told me that if he had prostate cancer he'd choose surgery for that reason. It's a reason that appeals to many men with all different levels of medical knowledge and education. I think it's one of the main reasons why active surveillance is less popular than we might expect. Most of us have a lot of trouble with the idea that there is cancer inside us and we're not doing anything to get rid of it. I have imagined, and it may only be my imagination, that Internet users on the whole tend to be younger than those who do not use the Internet. If that's true, it may be that the above numbers reflect a younger patient population and that including more older men would increase the numbers for radiation, active surveillance, and ADT while decreasing those for surgery. Thank you Terry for crunching the numbers on this and reporting the results. Alan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2009 Report Share Posted November 17, 2009 Very interesting, Chris. I will. I'm happy to say that four days after my last/most recent IGRT treatment, I have a grand total of one aspirin in me and the pain is manageable for the first time. But relieving myself (either end) is not exactly a relief. Still hurts like crazy. Continued good health to you! Tom Lauterback From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of elhorizonte Sent: Monday, November 16, 2009 2:34 PM To: ProstateCancerSupport Subject: Re: Yana Updates Tom, Further to Alan's post. (Usual waiver about lack medical knowledge), perhaps you should ask your Docs about plain old prostatitis. It did occur to me after my reply to you, that I wasn't accurate when I said I'd had no penile pain after my treatment. I had forgotten I had a bout of it 6 months after IGRT stopped. It lasted about 4 days and when I went to the toilet for either reason I couldn't tell my proverbial a*** from my proverbial elbow! The pain could be anywhere. I felt I was turning inside out if I was sitting on the loo, and your analogy of molten lead held true if I was standing up. The pain was only at toilet times and only lasted 5 minutes after each event and as I said only for about 4 days. I guessed delayed radiation effects, my (new) Unco diagnosed (ie guessed) bacterial proctatitis. Either way the symptoms and the pain were long gone before I started the prescribed 12 days of Cipro, but it had skyrocketed my PSA up to 9.9 Rick on here pointed to studies that showed massive cell death at the 6 months point and suggested it may have been that. Hope things get better for you soon. Spain Re: Yana Updates Terry Herbert wrote: > Thought you might be interested that there are over 780 stories on site now, > most of them ‘live’ with updates within the last 18 months. Last time I > checked, the relevant numbers were: RALP (Robotic Assisted Laparoscopic Surgery)- 249 (33%) Surgery – 184 (24%) ADT (Androgen Deprivation Therapy) – 90 (12%) EBRT (External Beam Radiation Treatment) - 57 (8%) Active Surveillance - 54 (7%) Proton Beam – 48 – (6%) Brachytherapy - 37 – (5%) HIFU (17) – (2%) Undecided – 16 (2%) Cryotherapy - 5 (1%) That is fascinating information. The number of HIFU and cryotherapy patients (3%) is larger than I would have expected, though perhaps the HIFU patients are in Europe, where it is more popular than elsewhere. The number of radiation patients is less than I would have expected, accounting for only 19% total. That is in spite of the many recent developments in radiation. The Active Surveillance group is also smaller than I would have expected. Surgery is still the favorite treatment at 57% total. The greater popularity of RALP over open surgery is probably new in just the last five years, but it wouldn't surprise me if, five years from now, it's almost all RALP. If nothing else, the high tech appeal is much greater than for open surgery. If we were to ask men why they chose surgery over all other modalities, I speculate that the number one reason would be, " I want it OUT! " I have a cousin who is a medical oncologist who told me that if he had prostate cancer he'd choose surgery for that reason. It's a reason that appeals to many men with all different levels of medical knowledge and education. I think it's one of the main reasons why active surveillance is less popular than we might expect. Most of us have a lot of trouble with the idea that there is cancer inside us and we're not doing anything to get rid of it. I have imagined, and it may only be my imagination, that Internet users on the whole tend to be younger than those who do not use the Internet. If that's true, it may be that the above numbers reflect a younger patient population and that including more older men would increase the numbers for radiation, active surveillance, and ADT while decreasing those for surgery. Thank you Terry for crunching the numbers on this and reporting the results. Alan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2009 Report Share Posted November 17, 2009 Since I had BPH for years, long before my PCa diagnosis, I've been taking saw palmetto and other supposedly prostate-friendly herbs, nostrums and potions...stinging nettles, pygeum, quercitin, pumpkin seed, etc. Whether any of it has done any good or not, who knows? Obviously, I got prostate cancer anyway. And I'm hoping, this will be my last week of radiation treatment, if we even do the remaining two zappings. Time to heal! Cheers indeed, Randall Tom Lauterback From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Randall Crossley Sent: Monday, November 16, 2009 8:26 PM To: ProstateCancerSupport Subject: Re: Yana Updates Tom my doctor said even though I have got prostate cancer, I still have got Benign Hypertrophy BHP, sorry that should be Hypertrophy as it not Benign any more he percribved Saw palmetto and it work well for me (Hypertrophy (from Greek ὑπÎÏ " excess " + Ï„Ïοφή " nourishment " ) is the increase in the volume of an organ or tissue due to the enlargement of its component cells.) The question I want to ask you is! what are you taking for your Hypertrophy? Cheers Randall From: Tom Lauterback To: ProstateCancerSupport Sent: Tue, 17 November, 2009 2:18:30 AM Subject: RE: Yana Updates Thanks, Alan, for your thoughtful response. About the ONLY thing I can't blame for my pain is the devilish digit (DRE); haven't had one for a while. I understand the possibility of mis-aiming, and, of course, I could have had a muscle cramp causing me to move a bit. But I don't think so, and it seems to me those would have resulted in damage centimeters away from the prostate, not to the head of the penis or the anus. When I urinate, it seems as if the urine is about the temperature of molten lead. I'm not aware of previous urinary tract infections, although there's always that possibility. What strikes me as strange is that I had BPH symptoms for many years, long before I had my first PSA and certainly long before my biopsy. I probably didn't have PCa during much of that time, since I have such a " light " case now, if there is such a thing. So, who do I trust and how much? I've said it before; I feel like a hot potato. If you take my uro, my internist and my radiological oncologist, it seems each one wants someone else to manage the situation. Just taking pain as an example, my internist doesn't want to continue re-prescribing hydrocodone, and I understand that. I sure as hell don't want to get addicted to anything, which is why the opium suppositories scare me also. But no one seems willing or able to control the situation. Of course, I know ultimately that it is I who must control it, but that's an MS after my name, not an MD. So, I'm not sure whom to trust. A complicating factor is that I'm on my third urologist, having summarily fired the first two. He's only seen me once, so we're not exactly longtime bosom buddies. He doesn't want to see me until mid-December when the swelling from the radiation should have gone down. But both my other docs insist I see him immediately. I'll check on the grays when I see the oncologist Thursday. Does 38 per treatment X 44 treatments sound right? I could be way off here; I have nothing in writing that spells out the plan. But, meanwhile, the pain is not diminishing and the incontinence doesn't exactly enhance quality of life. Thanks again, Alan. Tom Lauterback From: ProstateCancerSuppo rtyahoogroups (DOT) com [mailto:ProstateCan cerSupport@ yahoogroups. com] On Behalf Of Alan Meyer Sent: Monday, November 16, 2009 9:55 AM To: ProstateCancerSuppo rtyahoogroups (DOT) com Subject: Re: [ProstateCancerSupp ort] Yana Updates Tom Lauterback <tkl60123wowway (DOT) com> wrote: > I do have one question. Today and tomorrow were to have been my > last treatments, but I'm in significant pain and thus have > postponed them until Thursday and Friday, if I get them at all. > Have members of the group had problems with burning and sharp > pain in the penis and anus during or after IMRT? I only had 25 sessions of EBRT together with some brachytherapy. However I experienced nothing at all like this. My first thought was that maybe the radiation was mis-aimed or you moved on the table during radiation. However, even if it was mis-aimed or if you moved, I don't know if that would fully account for the pain. After all, people get 44 sessions of IMRT directly to the prostate but don't get pain in the prostate from it. I had a lot of pain in the anus that I attributed to a botched digital rectal exam. The gorilla urologist stuck his finger in my rectum, felt for three seconds, yanked it out (sideways it seemed) and reported there was nothing there. Shortly thereafter my slender young lady radiation oncologist did a careful DRE and detected two tumors without hurting me at all - which made me doubly angry at the gorilla. It was many months before the hemorrhoids and pain eased up, and the radiation I received during that period didn't help. Although I attribute the pain to the DRE, it was not clearly localized. It felt like a combination of rectal pain and prostatitis. I suspect that many kinds of pain are like this. It can be hard to locate the exact source of the pain. > The various doctors tell me I have/had a urinary tract > infection, and I've been on three different antibiotic courses. > I've taken enough hydrocodone (vikodin) to kill a horse, as > well as belladonna and opium suppositories, overdoses of OTC > painkillers I probably shouldn't be taking in the first place, > and I still can't sleep through the night. Perhaps all this is > normal and I just have to wait for the radiation treatments to > end and the healing to begin. But, in addition to being > incontinent, I'm in some pretty brutal pain. Have you ever had a urinary tract infection before? Radiation shouldn't cause it though I imagine a catheterization could. I'm pretty sure that what you're experiencing is not normal. The problem now is, will more treatment make it better or make it worse. You've gotten so much treatment already with so little benefit that maybe a week of rest would be better than trying yet more. I guess a lot depends on whether the problem is getting worse or not. If it's continuing to get worse, then maybe you've got to escalate things - terrible as that seems. How much confidence do you have in your doctors? Do they seem to care about this problem? If they somehow caused it, do you think they're the kinds of people who would take responsibility and try to help, or might they try to BS their way out of any responsibility, even to the point of refusing to look for causes that might implicate their treatment? If your confidence in the docs is waning, is there an alternative? > Any great thoughts? And does anyone have an opinion on stopping > at 42 treatments as opposed to the prescribed 44? Radiation oncology is such a high tech science that I'm reluctant to even venture a speculation, much less a " great thought " on what you should do. You really need expert advice. Ask the rad onc for an opinion on this. Ask how many grays you've already gotten and how much more was in the treatment plan. Ask what would happen if you stop treatment now and come in in a week, or two weeks, or a month, or never, for the rest. > I have no brachy, chemo or any other treatment planned or > contemplated. I was a 5.7 PSA, T1, 25% of one of 12 samples > malignant. And I'll avoid self-catheterizatio n, which is what > my uro wants me to do, at all costs. I still believe that's > what caused my incontinence in the first place. Your cancer is very low risk, low grade. Ask the rad onc if that is a factor in deciding whether to quit now. > But, as Dennis says, I could be wrong. As could I and, more importantly, as could your doctors. Alan Win 1 of 4 Sony home entertainment packs thanks to Yahoo!7. Enter now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2009 Report Share Posted November 17, 2009 Ok Guys and Gals, I have just gotten the news that my cancer is in a lymph node near my veins that split to go to my legs. I was basicly told if all the meds work right I have five years. I asked if there is a way to kill it or take it out and they doing is a worse prognosis and they would not get it all anyway. Suggestions would be appreciated-have had adiation in the protrate area and do not have a prostrate. Basicly they said once it gets out of the prostrate they cannot kill it just delay for 4or 5 years if everything goes right. If you have info about support groups, meds to deal with anxiety and fear, alternative stuff that works, and/ or trails that look promising let me know. Thanks for being here, Tom w (tx) To: ProstateCancerSupport Sent: Tue, November 17, 2009 9:50:32 AMSubject: RE: Yana Updates Very interesting, Chris. I will. I'm happy to say that four days after my last/most recent IGRT treatment, I have a grand total of one aspirin in me and the pain is manageable for the first time. But relieving myself (either end) is not exactly a relief. Still hurts like crazy. Continued good health to you! Tom Lauterback From: ProstateCancerSuppo rtyahoogroups (DOT) com [mailto:ProstateCan cerSupport@ yahoogroups. com] On Behalf Of elhorizonteSent: Monday, November 16, 2009 2:34 PMTo: ProstateCancerSuppo rtyahoogroups (DOT) comSubject: Re: [ProstateCancerSupp ort] Yana Updates Tom, Further to Alan's post. (Usual waiver about lack medical knowledge), perhaps you should ask your Docs about plain old prostatitis. It did occur to me after my reply to you, that I wasn't accurate when I said I'd had no penile pain after my treatment. I had forgotten I had a bout of it 6 months after IGRT stopped. It lasted about 4 days and when I went to the toilet for either reason I couldn't tell my proverbial a*** from my proverbial elbow! The pain could be anywhere. I felt I was turning inside out if I was sitting on the loo, and your analogy of molten lead held true if I was standing up. The pain was only at toilet times and only lasted 5 minutes after each event and as I said only for about 4 days. I guessed delayed radiation effects, my (new) Unco diagnosed (ie guessed) bacterial proctatitis. Either way the symptoms and the pain were long gone before I started the prescribed 12 days of Cipro, but it had skyrocketed my PSA up to 9.9 Rick on here pointed to studies that showed massive cell death at the 6 months point and suggested it may have been that. Hope things get better for you soon. Spain Re: [ProstateCancerSupp ort] Yana Updates Terry Herbert <ghenesh_49@optusnet .com.au> wrote:> Thought you might be interested that there are over 780 stories on site now,> most of them ‘live’ with updates within the last 18 months. Last time I> checked, the relevant numbers were:RALP (Robotic Assisted Laparoscopic Surgery)- 249 (33%)Surgery – 184 (24%)ADT (Androgen Deprivation Therapy) – 90 (12%)EBRT (External Beam Radiation Treatment) - 57 (8%)Active Surveillance - 54 (7%)Proton Beam – 48 – (6%)Brachytherapy - 37 – (5%)HIFU (17) – (2%)Undecided – 16 (2%)Cryotherapy - 5 (1%)That is fascinating information. The number of HIFU andcryotherapy patients (3%) is larger than I would have expected,though perhaps the HIFU patients are in Europe, where it is morepopular than elsewhere. The number of radiation patients is lessthan I would have expected, accounting for only 19% total. Thatis in spite of the many recent developments in radiation. TheActive Surveillance group is also smaller than I would haveexpected. Surgery is still the favorite treatment at 57% total. Thegreater popularity of RALP over open surgery is probably new injust the last five years, but it wouldn't surprise me if, fiveyears from now, it's almost all RALP. If nothing else, the hightech appeal is much greater than for open surgery.If we were to ask men why they chose surgery over all othermodalities, I speculate that the number one reason would be, "Iwant it OUT!" I have a cousin who is a medical oncologist whotold me that if he had prostate cancer he'd choose surgery forthat reason. It's a reason that appeals to many men with alldifferent levels of medical knowledge and education. I thinkit's one of the main reasons why active surveillance is lesspopular than we might expect. Most of us have a lot of troublewith the idea that there is cancer inside us and we're not doinganything to get rid of it.I have imagined, and it may only be my imagination, that Internetusers on the whole tend to be younger than those who do not usethe Internet. If that's true, it may be that the above numbersreflect a younger patient population and that including moreolder men would increase the numbers for radiation, activesurveillance, and ADT while decreasing those for surgery.Thank you Terry for crunching the numbers on this and reportingthe results.Alan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2009 Report Share Posted November 17, 2009 Tom,First thing is first - Don't believe that you have only five years left, that statement is BS. Nobody knows how long you you have left in this world, you might get hit by a bus this afternoon and not make it to dinner, or you might be hear in ten years, or even 15 years. I know many men who have been diagnosed with advanced prostate cancer over ten years ago and are still here with us today. My recurrence, also with a spread to my lymph nodes like you, happened four years ago with a PSA of over 87, today my PSA is 0.56 and I feel great. I am not an unusual exception, there are many men in a similar position to me. Yes, men do die from prostate cancer, way too many men, but often we can slow it down and hopefully, in the future, continue to control it for even longer time periods. I am not going to tell you that you might not die from prostate cancer within 5 years, but I am telling you that there is a huge chance that you will be here long after the five year mark. Next order of business is to be sure that you have an excellent medical oncologist who knows prostate cancer, not a urologist in charge of your treatment. The expertise of an experienced oncologist will help you pass that five year mark. If you are not being treated with an oncologist finding one, that is your first order of business. My experience is that support groups are very helpful, find a local group and become a regular. Let us know here you live as we might be able to help you locate a good group. On-line support groups are also helpful. I moderate one for men with advanced prostate cancer. You can join by going to: http://health.groups.yahoo.com/group/advancedprostatecancer/join I also write a blog at www.advancedprostatecancer.net about advanced prostate cancer that you could read. I try and write something most days. Having advanced prostate cancer does stink, but we still have a the significant potential of a long and happy life in front of us. Ok Guys and Gals, I have just gotten the news that my cancer is in a lymph node near my veins that split to go to my legs. I was basicly told if all the meds work right I have five years. I asked if there is a way to kill it or take it out and they doing is a worse prognosis and they would not get it all anyway. Suggestions would be appreciated-have had adiation in the protrate area and do not have a prostrate. Basicly they said once it gets out of the prostrate they cannot kill it just delay for 4or 5 years if everything goes right. If you have info about support groups, meds to deal with anxiety and fear, alternative stuff that works, and/ or trails that look promising let me know. Thanks for being here, Tom w (tx) To: ProstateCancerSupport Sent: Tue, November 17, 2009 9:50:32 AMSubject: RE: Yana Updates Very interesting, Chris. I will. I'm happy to say that four days after my last/most recent IGRT treatment, I have a grand total of one aspirin in me and the pain is manageable for the first time. But relieving myself (either end) is not exactly a relief. Still hurts like crazy. Continued good health to you! Tom Lauterback From: ProstateCancerSuppo rtyahoogroups (DOT) com [mailto:ProstateCan cerSupport@ yahoogroups. com] On Behalf Of elhorizonte Sent: Monday, November 16, 2009 2:34 PMTo: ProstateCancerSuppo rtyahoogroups (DOT) comSubject: Re: [ProstateCancerSupp ort] Yana Updates Tom, Further to Alan's post. (Usual waiver about lack medical knowledge), perhaps you should ask your Docs about plain old prostatitis. It did occur to me after my reply to you, that I wasn't accurate when I said I'd had no penile pain after my treatment. I had forgotten I had a bout of it 6 months after IGRT stopped. It lasted about 4 days and when I went to the toilet for either reason I couldn't tell my proverbial a*** from my proverbial elbow! The pain could be anywhere. I felt I was turning inside out if I was sitting on the loo, and your analogy of molten lead held true if I was standing up. The pain was only at toilet times and only lasted 5 minutes after each event and as I said only for about 4 days. I guessed delayed radiation effects, my (new) Unco diagnosed (ie guessed) bacterial proctatitis. Either way the symptoms and the pain were long gone before I started the prescribed 12 days of Cipro, but it had skyrocketed my PSA up to 9.9 Rick on here pointed to studies that showed massive cell death at the 6 months point and suggested it may have been that. Hope things get better for you soon. Spain Re: [ProstateCancerSupp ort] Yana Updates Terry Herbert <ghenesh_49@optusnet .com.au> wrote:> Thought you might be interested that there are over 780 stories on site now, > most of them ‘live’ with updates within the last 18 months. Last time I> checked, the relevant numbers were:RALP (Robotic Assisted Laparoscopic Surgery)- 249 (33%)Surgery – 184 (24%)ADT (Androgen Deprivation Therapy) – 90 (12%) EBRT (External Beam Radiation Treatment) - 57 (8%)Active Surveillance - 54 (7%)Proton Beam – 48 – (6%)Brachytherapy - 37 – (5%)HIFU (17) – (2%)Undecided – 16 (2%)Cryotherapy - 5 (1%) That is fascinating information. The number of HIFU andcryotherapy patients (3%) is larger than I would have expected,though perhaps the HIFU patients are in Europe, where it is morepopular than elsewhere. The number of radiation patients is lessthan I would have expected, accounting for only 19% total. Thatis in spite of the many recent developments in radiation. The Active Surveillance group is also smaller than I would haveexpected. Surgery is still the favorite treatment at 57% total. Thegreater popularity of RALP over open surgery is probably new injust the last five years, but it wouldn't surprise me if, five years from now, it's almost all RALP. If nothing else, the hightech appeal is much greater than for open surgery.If we were to ask men why they chose surgery over all othermodalities, I speculate that the number one reason would be, " I want it OUT! " I have a cousin who is a medical oncologist whotold me that if he had prostate cancer he'd choose surgery forthat reason. It's a reason that appeals to many men with alldifferent levels of medical knowledge and education. I thinkit's one of the main reasons why active surveillance is lesspopular than we might expect. Most of us have a lot of troublewith the idea that there is cancer inside us and we're not doing anything to get rid of it.I have imagined, and it may only be my imagination, that Internetusers on the whole tend to be younger than those who do not usethe Internet. If that's true, it may be that the above numbers reflect a younger patient population and that including moreolder men would increase the numbers for radiation, activesurveillance, and ADT while decreasing those for surgery.Thank you Terry for crunching the numbers on this and reporting the results.Alan -- T Nowak MA, MSWDirector for Advocacy and Advanced Prostate Cancer Programs, Malecare Inc. Men Fighting Cancer TogetherSurvivor - Thyroid, Recurrent Prostate and Renal Cancers www.advancedprostatecancer.net - A blog about advanced and recurrent prostate cancerwww.malecare.com - information and support about prostate cancer http://health.groups.yahoo.com/group/advancedprostatecancer/ - an online support group for men and their families diagnosed with advanced and recurrent prostate cancer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2009 Report Share Posted November 17, 2009 > I have just gotten the news that my cancer is in a lymph node near my > veins that split to go to my legs. I was basicly told if all the meds > work right I have five years. Sorry to see the news. No one, not even the MDs (Medical Deities), can predict what will happen. Such predictions are hogwash. > I asked if there is a way to kill it or > take it out and they doing is a worse prognosis and they would not get > it all anyway. Suggestions would be appreciated-have had adiation in the > protrate area and do not have a prostrate. Basicly they said once it > gets out of the prostrate they cannot kill it just delay for 4or 5 years > if everything goes right. More hogwash. " They " have given up, which IMO is poor medicine. Who is " they " ? If a urologist, I most earnestly recommend consulting a true cancer specialist, a medical oncologist; preferably one who is well educated in treatment of PCa. A rich source of reliable information is the Prostate Cancer Research Institute (PCRI), at http://www.prostate-cancer.org/pcricms/ Under " Resources " is a link to aid in finding a physician. > If you have info about support groups, Us Too International: http://www.ustoo.com/ There is a link to local chapters in the center column of the home page. > meds to deal with anxiety and fear, There are many. Paxil and Effexor are well-known. > alternative stuff that works, I don't know of any and recommend saving precious time (and money) by staying away from it. > and/ or trails (sic: trials) that look promising Not knowing Tom's clinical situation, I can only recommend this site, where search criteria can be entered: http://www.clinicaltrials.gov/ct2/ Lastly, I recommend starting a new thread on this subject so as to avoid confusion. Best of luck, Steve J " Find people who are more interested in helping you to learn than teaching you what *they* think you need to know. " -- Young, PCa Mentor Phoenix 5 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2009 Report Share Posted November 17, 2009 I agree I have heard of men being given months to live and they lived 11 years after diagnosis of very agressive cancer RRP in 1996 Re: [ProstateCancerSupp ort] Yana Updates Terry Herbert <ghenesh_49@optusnet .com.au> wrote:> Thought you might be interested that there are over 780 stories on site now,> most of them ‘live’ with updates within the last 18 months. Last time I> checked, the relevant numbers were:RALP (Robotic Assisted Laparoscopic Surgery)- 249 (33%)Surgery – 184 (24%)ADT (Androgen Deprivation Therapy) – 90 (12%)EBRT (External Beam Radiation Treatment) - 57 (8%)Active Surveillance - 54 (7%)Proton Beam – 48 – (6%)Brachytherapy - 37 – (5%)HIFU (17) – (2%)Undecided – 16 (2%)Cryotherapy - 5 (1%)That is fascinating information. The number of HIFU andcryotherapy patients (3%) is larger than I would have expected,though perhaps the HIFU patients are in Europe, where it is morepopular than elsewhere. The number of radiation patients is lessthan I would have expected, accounting for only 19% total. Thatis in spite of the many recent developments in radiation. TheActive Surveillance group is also smaller than I would haveexpected. Surgery is still the favorite treatment at 57% total. Thegreater popularity of RALP over open surgery is probably new injust the last five years, but it wouldn't surprise me if, fiveyears from now, it's almost all RALP. If nothing else, the hightech appeal is much greater than for open surgery.If we were to ask men why they chose surgery over all othermodalities, I speculate that the number one reason would be, "Iwant it OUT!" I have a cousin who is a medical oncologist whotold me that if he had prostate cancer he'd choose surgery forthat reason. It's a reason that appeals to many men with alldifferent levels of medical knowledge and education. I thinkit's one of the main reasons why active surveillance is lesspopular than we might expect. Most of us have a lot of troublewith the idea that there is cancer inside us and we're not doinganything to get rid of it.I have imagined, and it may only be my imagination, that Internetusers on the whole tend to be younger than those who do not usethe Internet. If that's true, it may be that the above numbersreflect a younger patient population and that including moreolder men would increase the numbers for radiation, activesurveillance, and ADT while decreasing those for surgery.Thank you Terry for crunching the numbers on this and reportingthe results.Alan -- T Nowak MA, MSWDirector for Advocacy and Advanced Prostate Cancer Programs, Malecare Inc. Men Fighting Cancer TogetherSurvivor - Thyroid, Recurrent Prostate and Renal Cancerswww.advancedprostatecancer.net - A blog about advanced and recurrent prostate cancerwww.malecare.com - information and support about prostate cancerhttp://health.groups.yahoo.com/group/advancedprostatecancer/ - an online support group for men and their families diagnosed with advanced and recurrent prostate cancer No virus found in this incoming message.Checked by AVG - www.avg.com Version: 8.5.425 / Virus Database: 270.14.69/2508 - Release Date: 11/17/09 07:40:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2009 Report Share Posted November 17, 2009 Thanks , I certainly hope so and I will look up those sites and look at your blog. I am in the Houston, Texas area and I have a Oncologist with Kelsey Sebold Group here. I will get my records and got to MD Cancer hospital here in Houston and see what they say. They recognized as some the worlds best in cancer. Again thanks for your encouragement and hope. I am doing ok most of the time and I do not really want to but wonder if at this point in this process it is time to get on some antianxiety pill. Reccomended suppliments. I can go get and intervenious drip of vitman C. Some seem to swear by it. What about diet and anticancer foods? Thanks Again , Tom W. Tex To: ProstateCancerSupport Sent: Wed, November 18, 2009 12:16:41 AMSubject: Re: Yana Updates Tom,First thing is first - Don't believe that you have only five years left, that statement is BS.Nobody knows how long you you have left in this world, you might get hit by a bus this afternoon and not make it to dinner, or you might be hear in ten years, or even 15 years. I know many men who have been diagnosed with advanced prostate cancer over ten years ago and are still here with us today. My recurrence, also with a spread to my lymph nodes like you, happened four years ago with a PSA of over 87, today my PSA is 0.56 and I feel great. I am not an unusual exception, there are many men in a similar position to me. Yes, men do die from prostate cancer, way too many men, but often we can slow it down and hopefully, in the future, continue to control it for even longer time periods. I am not going to tell you that you might not die from prostate cancer within 5 years, but I am telling you that there is a huge chance that you will be here long after the five year mark. Next order of business is to be sure that you have an excellent medical oncologist who knows prostate cancer, not a urologist in charge of your treatment. The expertise of an experienced oncologist will help you pass that five year mark. If you are not being treated with an oncologist finding one, that is your first order of business. My experience is that support groups are very helpful, find a local group and become a regular. Let us know here you live as we might be able to help you locate a good group. On-line support groups are also helpful. I moderate one for men with advanced prostate cancer. You can join by going to: http://health. groups.yahoo. com/group/ advancedprostate cancer/joinI also write a blog at www.advancedprostat ecancer.net about advanced prostate cancer that you could read. I try and write something most days. Having advanced prostate cancer does stink, but we still have a the significant potential of a long and happy life in front of us. On Tue, Nov 17, 2009 at 11:42 AM, Tom <tomcw4aaayahoo (DOT) com> wrote: Ok Guys and Gals, I have just gotten the news that my cancer is in a lymph node near my veins that split to go to my legs. I was basicly told if all the meds work right I have five years. I asked if there is a way to kill it or take it out and they doing is a worse prognosis and they would not get it all anyway. Suggestions would be appreciated- have had adiation in the protrate area and do not have a prostrate. Basicly they said once it gets out of the prostrate they cannot kill it just delay for 4or 5 years if everything goes right. If you have info about support groups, meds to deal with anxiety and fear, alternative stuff that works, and/ or trails that look promising let me know. Thanks for being here, Tom w (tx) From: Tom Lauterback <tkl60123wowway (DOT) com>To: ProstateCancerSuppo rtyahoogroups (DOT) comSent: Tue, November 17, 2009 9:50:32 AMSubject: RE: [ProstateCancerSupp ort] Yana Updates Very interesting, Chris. I will. I'm happy to say that four days after my last/most recent IGRT treatment, I have a grand total of one aspirin in me and the pain is manageable for the first time. But relieving myself (either end) is not exactly a relief. Still hurts like crazy. Continued good health to you! Tom Lauterback From: ProstateCancerSuppo rtyahoogroups (DOT) com [mailto:ProstateCan cerSupport@ yahoogroups. com] On Behalf Of elhorizonteSent: Monday, November 16, 2009 2:34 PMTo: ProstateCancerSuppo rtyahoogroups (DOT) comSubject: Re: [ProstateCancerSupp ort] Yana Updates Tom, Further to Alan's post. (Usual waiver about lack medical knowledge), perhaps you should ask your Docs about plain old prostatitis. It did occur to me after my reply to you, that I wasn't accurate when I said I'd had no penile pain after my treatment. I had forgotten I had a bout of it 6 months after IGRT stopped. It lasted about 4 days and when I went to the toilet for either reason I couldn't tell my proverbial a*** from my proverbial elbow! The pain could be anywhere. I felt I was turning inside out if I was sitting on the loo, and your analogy of molten lead held true if I was standing up. The pain was only at toilet times and only lasted 5 minutes after each event and as I said only for about 4 days. I guessed delayed radiation effects, my (new) Unco diagnosed (ie guessed) bacterial proctatitis. Either way the symptoms and the pain were long gone before I started the prescribed 12 days of Cipro, but it had skyrocketed my PSA up to 9.9 Rick on here pointed to studies that showed massive cell death at the 6 months point and suggested it may have been that. Hope things get better for you soon. Spain Re: [ProstateCancerSupp ort] Yana Updates Terry Herbert <ghenesh_49@optusnet .com.au> wrote:> Thought you might be interested that there are over 780 stories on site now,> most of them ‘live’ with updates within the last 18 months. Last time I> checked, the relevant numbers were:RALP (Robotic Assisted Laparoscopic Surgery)- 249 (33%)Surgery – 184 (24%)ADT (Androgen Deprivation Therapy) – 90 (12%)EBRT (External Beam Radiation Treatment) - 57 (8%)Active Surveillance - 54 (7%)Proton Beam – 48 – (6%)Brachytherapy - 37 – (5%)HIFU (17) – (2%)Undecided – 16 (2%)Cryotherapy - 5 (1%)That is fascinating information. The number of HIFU andcryotherapy patients (3%) is larger than I would have expected,though perhaps the HIFU patients are in Europe, where it is morepopular than elsewhere. The number of radiation patients is lessthan I would have expected, accounting for only 19% total. Thatis in spite of the many recent developments in radiation. TheActive Surveillance group is also smaller than I would haveexpected. Surgery is still the favorite treatment at 57% total. Thegreater popularity of RALP over open surgery is probably new injust the last five years, but it wouldn't surprise me if, fiveyears from now, it's almost all RALP. If nothing else, the hightech appeal is much greater than for open surgery.If we were to ask men why they chose surgery over all othermodalities, I speculate that the number one reason would be, "Iwant it OUT!" I have a cousin who is a medical oncologist whotold me that if he had prostate cancer he'd choose surgery forthat reason. It's a reason that appeals to many men with alldifferent levels of medical knowledge and education. I thinkit's one of the main reasons why active surveillance is lesspopular than we might expect. Most of us have a lot of troublewith the idea that there is cancer inside us and we're not doinganything to get rid of it.I have imagined, and it may only be my imagination, that Internetusers on the whole tend to be younger than those who do not usethe Internet. If that's true, it may be that the above numbersreflect a younger patient population and that including moreolder men would increase the numbers for radiation, activesurveillance, and ADT while decreasing those for surgery.Thank you Terry for crunching the numbers on this and reportingthe results.Alan -- T Nowak MA, MSWDirector for Advocacy and Advanced Prostate Cancer Programs, Malecare Inc. Men Fighting Cancer TogetherSurvivor - Thyroid, Recurrent Prostate and Renal Cancerswww.advancedprostat ecancer.net - A blog about advanced and recurrent prostate cancerwww.malecare. com - information and support about prostate cancerhttp://health. groups.yahoo. com/group/ advancedprostate cancer/ - an online support group for men and their families diagnosed with advanced and recurrent prostate cancer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2009 Report Share Posted November 17, 2009 Thnaks Steve, I will follow through with those sites and my oncologist reccomended the same site for trails. My brain s everywhere so being redirected into useful productive sites, thinking and doing is appreciated. I am not interested in wasting time on dead ends. Oh knowledge about Md Houston, Texas. Novice Newbe, Tom W. Tex To: ProstateCancerSupport Sent: Wed, November 18, 2009 1:11:55 AMSubject: Re: Yana Updates> I have just gotten the news that my cancer is in a lymph node near my > veins that split to go to my legs. I was basicly told if all the meds > work right I have five years.Sorry to see the news.No one, not even the MDs (Medical Deities), can predict what will happen.Such predictions are hogwash.> I asked if there is a way to kill it or > take it out and they doing is a worse prognosis and they would not get > it all anyway. Suggestions would be appreciated-have had adiation in the > protrate area and do not have a prostrate. Basicly they said once it > gets out of the prostrate they cannot kill it just delay for 4or 5 years > if everything goes right.More hogwash. "They" have given up, which IMO is poor medicine.Who is "they"? If a urologist, I most earnestly recommend consulting atrue cancer specialist, a medical oncologist; preferably one who is welleducated in treatment of PCa.A rich source of reliable information is the Prostate Cancer ResearchInstitute (PCRI), at http://www.prostate-cancer.org/pcricms/Under "Resources" is a link to aid in finding a physician.> If you have info about support groups,Us Too International: http://www.ustoo.com/There is a link to local chapters in the center column of the home page.> meds to deal with anxiety and fear,There are many. Paxil and Effexor are well-known.> alternative stuff that works, I don't know of any and recommend saving precious time (and money) by staying away from it.> and/ or trails (sic: trials) that look promising Not knowing Tom's clinical situation, I can only recommend this site,where search criteria can be entered: http://www.clinicaltrials.gov/ct2/Lastly, I recommend starting a new thread on this subject so as to avoid confusion.Best of luck,Steve J"Find people who are more interested in helping you to learn than teaching you what *they* think you need to know."-- Young, PCa MentorPhoenix 5------------------------------------There are just two rules for this group 1 No Spam 2 Be kind to othersPlease recognise that Prostate Cancerhas different guises and needs different levels of treatment and in some cases no treatment at all. Some men even with all options offered chose radical options that you would not choose. We only ask that people be informed before choice is made, we cannot and should not tell other members what to do, other than look at other options. Try to delete old material that is no longer applying when clicking replyTry to change the title if the content requires it Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2009 Report Share Posted November 17, 2009 Tom wrote: > ... I do not really want to but wonder if at this point in this > process it is time to get on some antianxiety pill. ... Tom, It is absolutely normal to be anxious and depressed after being given a diagnosis like yours. It has happened to almost all of us. When I was first diagnosed I couldn't think about anything else but cancer and death. I couldn't sleep at night. I thought of everyone around me as living normal lives while I lived under a death sentence. People would talk to me but I only half heard them. The television might be on but I only half watched the show. Music could play and I only half heard it. The other half of my mind was always thinking about cancer and death. I was pretty upset. An anti-anxiety pill doesn't seem like a bad idea to me. However I think it would be most useful to find a good counselor if you can who can talk you through this and, if necessary, suggest a pill that might help for your doctor to prescribe. I like that idea better than just going to your doctor and asking for a pill. The problem you are facing is one that most people will eventually face. Everyone will die eventually. We all know that. But somehow it gets very much more real when we're actually diagnosed with a life-threatening illness. We suddenly have to think about things that we put off thinking about all of our lives. I think that a lot of us are able to successfully come to terms with our own mortality and live well in spite of it. That's where a good counselor may be able to help more than a pill can. Ideally, it should be a wise person who is him or herself, 60 or 70 years old and has faced these issues for him or herself as well as for others. There are such people around. Perhaps someone at a local social service agency or the local hospital can either fill the bill or recommend someone who can. If you call them, tell them exactly what your problem is and ask if they have someone who is experienced at this, particularly someone near your own age. The key thing in my view is to enjoy the life we have. Sometimes a good movie, book or music, a dinner with good friends, a visit to grandchildren, or volunteer work helping others can do more for you than a pill. Different things work for different people. For me, the key is not to find something that makes me forget that I'm eventually going to die but to find something that is worth living for in spite of that. And it turns out that there are a huge number of things worth living for. I want to keep enjoying them and living for them right up to my last day if I can. And finally, I want to emphasize what everyone else has said. It is not written in stone that you will die in five years. There are men in this group and elsewhere who have the same level of disease as you and are still alive and symptom free ten or more years after being told they were done for. I think you have an excellent chance of living longer than five years. Furthermore, there are new treatments in the pipeline that will become available in the next five years. They may not cure the disease, but they might add still more years to your life. Good luck. Alan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2009 Report Share Posted November 18, 2009 Thanks , I would like to know if they did anthing as an added treatment to their medical treatment. I am single so I need to plan where to settle and since I have been traveling and how to procced in case of the worst case senerio happens.I just had back surgery and when you are by yourself it is tough. So trying to land in the best possible situation while living it out. Are their guides to plan for he eventualities. Settle all that stuff. Then live life as best as I can for however long. Thanks again 11 yeas sounds better than 4 or 5 years. Hope it turns out that way or better. Tom W. Tex To: ProstateCancerSupport Sent: Tue, November 17, 2009 12:35:53 PMSubject: Re: Yana Updates I agree I have heard of men being given months to live and they lived 11 years after diagnosis of very agressive cancer RRP in 1996 Re: [ProstateCancerSupp ort] Yana Updates Terry Herbert <ghenesh_49@optusnet .com.au> wrote:> Thought you might be interested that there are over 780 stories on site now,> most of them ‘live’ with updates within the last 18 months. Last time I> checked, the relevant numbers were:RALP (Robotic Assisted Laparoscopic Surgery)- 249 (33%)Surgery – 184 (24%)ADT (Androgen Deprivation Therapy) – 90 (12%)EBRT (External Beam Radiation Treatment) - 57 (8%)Active Surveillance - 54 (7%)Proton Beam – 48 – (6%)Brachytherapy - 37 – (5%)HIFU (17) – (2%)Undecided – 16 (2%)Cryotherapy - 5 (1%)That is fascinating information. The number of HIFU andcryotherapy patients (3%) is larger than I would have expected,though perhaps the HIFU patients are in Europe, where it is morepopular than elsewhere. The number of radiation patients is lessthan I would have expected, accounting for only 19% total. Thatis in spite of the many recent developments in radiation. TheActive Surveillance group is also smaller than I would haveexpected. Surgery is still the favorite treatment at 57% total. Thegreater popularity of RALP over open surgery is probably new injust the last five years, but it wouldn't surprise me if, fiveyears from now, it's almost all RALP. If nothing else, the hightech appeal is much greater than for open surgery.If we were to ask men why they chose surgery over all othermodalities, I speculate that the number one reason would be, "Iwant it OUT!" I have a cousin who is a medical oncologist whotold me that if he had prostate cancer he'd choose surgery forthat reason. It's a reason that appeals to many men with alldifferent levels of medical knowledge and education. I thinkit's one of the main reasons why active surveillance is lesspopular than we might expect. Most of us have a lot of troublewith the idea that there is cancer inside us and we're not doinganything to get rid of it.I have imagined, and it may only be my imagination, that Internetusers on the whole tend to be younger than those who do not usethe Internet. If that's true, it may be that the above numbersreflect a younger patient population and that including moreolder men would increase the numbers for radiation, activesurveillance, and ADT while decreasing those for surgery.Thank you Terry for crunching the numbers on this and reportingthe results.Alan -- T Nowak MA, MSWDirector for Advocacy and Advanced Prostate Cancer Programs, Malecare Inc. Men Fighting Cancer TogetherSurvivor - Thyroid, Recurrent Prostate and Renal Cancerswww.advancedprostat ecancer.net - A blog about advanced and recurrent prostate cancerwww.malecare. com - information and support about prostate cancerhttp://health. groups.yahoo. com/group/ advancedprostate cancer/ - an online support group for men and their families diagnosed with advanced and recurrent prostate cancer No virus found in this incoming message.Checked by AVG - www.avg.com Version: 8.5.425 / Virus Database: 270.14.69/2508 - Release Date: 11/17/09 07:40:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2009 Report Share Posted November 18, 2009 Alan, Good stuff thank you. I am alone and I feel apart from the normal flow of life and cannot bear to watch or see suffering right now. Typically I am pretty good at all of that and this is the first time I am having those toughts you talked about. I am not suicidal and I have thought about when it gets too bad finding help in dying. I cannot stand the idea of dying in a hospital being poked and prodded and an invalid. Sorry too morose (sp). I woke up early last night. It bothers me that they can extend it but when it gets out of the prostrate area they just delay the outcome and not try to kill it as well. They found it in my node near where my blood vessels fork to my legs. I asked can we take it out-no it spreads- can they radiate that area-no it would damage too many organs and would not kill them all. I woke up thinking lets put a low dosage seed there and try to sheild it from the surrounding tisues and etc. Anyway it is good to have your imput and experiences. Tom W. Tex To: ProstateCancerSupport Sent: Tue, November 17, 2009 1:54:28 PMSubject: Re: Yana Updates Tom <tomcw4aaayahoo (DOT) com> wrote:> ... I do not really want to but wonder if at this point in this> process it is time to get on some antianxiety pill. ...Tom,It is absolutely normal to be anxious and depressed after beinggiven a diagnosis like yours. It has happened to almost all ofus. When I was first diagnosed I couldn't think about anythingelse but cancer and death. I couldn't sleep at night. I thoughtof everyone around me as living normal lives while I lived undera death sentence. People would talk to me but I only half heardthem. The television might be on but I only half watched theshow. Music could play and I only half heard it. The other halfof my mind was always thinking about cancer and death. I waspretty upset.An anti-anxiety pill doesn't seem like a bad idea to me. HoweverI think it would be most useful to find a good counselor if youcan who can talk you through this and, if necessary, suggest apill that might help for your doctor to prescribe. I like thatidea better than just going to your doctor and asking for a pill.The problem you are facing is one that most people willeventually face. Everyone will die eventually. We all knowthat. But somehow it gets very much more real when we'reactually diagnosed with a life-threatening illness. We suddenlyhave to think about things that we put off thinking about all ofour lives.I think that a lot of us are able to successfully come to termswith our own mortality and live well in spite of it. That'swhere a good counselor may be able to help more than a pill can.Ideally, it should be a wise person who is him or herself, 60 or70 years old and has faced these issues for him or herself aswell as for others. There are such people around. Perhapssomeone at a local social service agency or the local hospitalcan either fill the bill or recommend someone who can. If youcall them, tell them exactly what your problem is and ask if theyhave someone who is experienced at this, particularly someonenear your own age.The key thing in my view is to enjoy the life we have. Sometimesa good movie, book or music, a dinner with good friends, a visitto grandchildren, or volunteer work helping others can do morefor you than a pill. Different things work for different people.For me, the key is not to find something that makes me forgetthat I'm eventually going to die but to find something that isworth living for in spite of that. And it turns out that thereare a huge number of things worth living for. I want to keepenjoying them and living for them right up to my last day if Ican.And finally, I want to emphasize what everyone else has said. Itis not written in stone that you will die in five years. Thereare men in this group and elsewhere who have the same level ofdisease as you and are still alive and symptom free ten or moreyears after being told they were done for. I think you have anexcellent chance of living longer than five years. Furthermore,there are new treatments in the pipeline that will becomeavailable in the next five years. They may not cure the disease,but they might add still more years to your life.Good luck.Alan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2009 Report Share Posted November 18, 2009 Tom W, I am beginning my treatments at Loma (pod forming, etc.) next week and have been moved by your comments. I want you to know our thoughts and prayers are with you. It is easy to give up but please keep your chin up (as much as possible) and as you know the mental side and attitude of an individual is extremely powerful (read Lance Armstrong's Bio). Damon To: ProstateCancerSupport Sent: Wed, November 18, 2009 9:21:08 AMSubject: Re: Yana Updates Alan, Good stuff thank you. I am alone and I feel apart from the normal flow of life and cannot bear to watch or see suffering right now. Typically I am pretty good at all of that and this is the first time I am having those toughts you talked about. I am not suicidal and I have thought about when it gets too bad finding help in dying. I cannot stand the idea of dying in a hospital being poked and prodded and an invalid. Sorry too morose (sp). I woke up early last night. It bothers me that they can extend it but when it gets out of the prostrate area they just delay the outcome and not try to kill it as well. They found it in my node near where my blood vessels fork to my legs. I asked can we take it out-no it spreads- can they radiate that area-no it would damage too many organs and would not kill them all. I woke up thinking lets put a low dosage seed there and try to sheild it from the surrounding tisues and etc. Anyway it is good to have your imput and experiences. Tom W. Tex From: Alan Meyer <ameyer2yahoo (DOT) com>To: ProstateCancerSuppo rtyahoogroups (DOT) comSent: Tue, November 17, 2009 1:54:28 PMSubject: Re: [ProstateCancerSupp ort] Yana Updates Tom <tomcw4aaayahoo (DOT) com> wrote:> ... I do not really want to but wonder if at this point in this> process it is time to get on some antianxiety pill. ...Tom,It is absolutely normal to be anxious and depressed after beinggiven a diagnosis like yours. It has happened to almost all ofus. When I was first diagnosed I couldn't think about anythingelse but cancer and death. I couldn't sleep at night. I thoughtof everyone around me as living normal lives while I lived undera death sentence. People would talk to me but I only half heardthem. The television might be on but I only half watched theshow. Music could play and I only half heard it. The other halfof my mind was always thinking about cancer and death. I waspretty upset.An anti-anxiety pill doesn't seem like a bad idea to me. HoweverI think it would be most useful to find a good counselor if youcan who can talk you through this and, if necessary, suggest apill that might help for your doctor to prescribe. I like thatidea better than just going to your doctor and asking for a pill.The problem you are facing is one that most people willeventually face. Everyone will die eventually. We all knowthat. But somehow it gets very much more real when we'reactually diagnosed with a life-threatening illness. We suddenlyhave to think about things that we put off thinking about all ofour lives.I think that a lot of us are able to successfully come to termswith our own mortality and live well in spite of it. That'swhere a good counselor may be able to help more than a pill can.Ideally, it should be a wise person who is him or herself, 60 or70 years old and has faced these issues for him or herself aswell as for others. There are such people around. Perhapssomeone at a local social service agency or the local hospitalcan either fill the bill or recommend someone who can. If youcall them, tell them exactly what your problem is and ask if theyhave someone who is experienced at this, particularly someonenear your own age.The key thing in my view is to enjoy the life we have. Sometimesa good movie, book or music, a dinner with good friends, a visitto grandchildren, or volunteer work helping others can do morefor you than a pill. Different things work for different people.For me, the key is not to find something that makes me forgetthat I'm eventually going to die but to find something that isworth living for in spite of that. And it turns out that thereare a huge number of things worth living for. I want to keepenjoying them and living for them right up to my last day if Ican.And finally, I want to emphasize what everyone else has said. Itis not written in stone that you will die in five years. Thereare men in this group and elsewhere who have the same level ofdisease as you and are still alive and symptom free ten or moreyears after being told they were done for. I think you have anexcellent chance of living longer than five years. Furthermore,there are new treatments in the pipeline that will becomeavailable in the next five years. They may not cure the disease,but they might add still more years to your life.Good luck.Alan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2009 Report Share Posted November 18, 2009 Tom I saden by what you going though, because I remember in May this year, I walk away from an RP, because the URO told me the nealy the same thing he told you he said because I have had a psa of around 4 for about 17 years it more then likely that the lymph nodes coming from my prostate will be effected by cancer becaust this he would have to take out the lymph nodes in the groin area. he them told me the nervies that control the in side of my legs run right beside these nodes if he found cancer in the nodes he would have to take the nurvies out as well on both sides of my legs this would have cripald me. for the rest of my life Thats why I had to walk away from the last chance to fixt this but it work out for the best though I have no treatment bar the anti-cancer diet I keep telling every one about my PSA been slowly droping and I have no urine retenion so I can still pee, but I must amit this anti- cancer diet Im on. is one of the hardest and stanges diets Ive ever come across.on it I can have Lo GI foods like chicken stake and Veg ect but I cant have any high GI foods like any sugary foods, drinks, or any fruit, or fruit juice. I all so have to kake high dose suplemants and minerals like 6 grams of vitamin C every day but I also take vitamims A,B and D3 minerals like high dose of zinc, and Selenium. it seem to be wporking as a lot of the people in the cancer support group at the church are also on it I just want to say dont give up hope just yet all the best Randall To: ProstateCancerSupport Sent: Wed, 18 November, 2009 7:21:08 AMSubject: Re: Yana Updates Alan, Good stuff thank you. I am alone and I feel apart from the normal flow of life and cannot bear to watch or see suffering right now. Typically I am pretty good at all of that and this is the first time I am having those toughts you talked about. I am not suicidal and I have thought about when it gets too bad finding help in dying. I cannot stand the idea of dying in a hospital being poked and prodded and an invalid. Sorry too morose (sp). I woke up early last night. It bothers me that they can extend it but when it gets out of the prostrate area they just delay the outcome and not try to kill it as well. They found it in my node near where my blood vessels fork to my legs. I asked can we take it out-no it spreads- can they radiate that area-no it would damage too many organs and would not kill them all. I woke up thinking lets put a low dosage seed there and try to sheild it from the surrounding tisues and etc. Anyway it is good to have your imput and experiences. Tom W. Tex From: Alan Meyer <ameyer2yahoo (DOT) com>To: ProstateCancerSuppo rtyahoogroups (DOT) comSent: Tue, November 17, 2009 1:54:28 PMSubject: Re: [ProstateCancerSupp ort] Yana Updates Tom <tomcw4aaayahoo (DOT) com> wrote:> ... I do not really want to but wonder if at this point in this> process it is time to get on some antianxiety pill. ...Tom,It is absolutely normal to be anxious and depressed after beinggiven a diagnosis like yours. It has happened to almost all ofus. When I was first diagnosed I couldn't think about anythingelse but cancer and death. I couldn't sleep at night. I thoughtof everyone around me as living normal lives while I lived undera death sentence. People would talk to me but I only half heardthem. The television might be on but I only half watched theshow. Music could play and I only half heard it. The other halfof my mind was always thinking about cancer and death. I waspretty upset.An anti-anxiety pill doesn't seem like a bad idea to me. HoweverI think it would be most useful to find a good counselor if youcan who can talk you through this and, if necessary, suggest apill that might help for your doctor to prescribe. I like thatidea better than just going to your doctor and asking for a pill.The problem you are facing is one that most people willeventually face. Everyone will die eventually. We all knowthat. But somehow it gets very much more real when we'reactually diagnosed with a life-threatening illness. We suddenlyhave to think about things that we put off thinking about all ofour lives.I think that a lot of us are able to successfully come to termswith our own mortality and live well in spite of it. That'swhere a good counselor may be able to help more than a pill can.Ideally, it should be a wise person who is him or herself, 60 or70 years old and has faced these issues for him or herself aswell as for others. There are such people around. Perhapssomeone at a local social service agency or the local hospitalcan either fill the bill or recommend someone who can. If youcall them, tell them exactly what your problem is and ask if theyhave someone who is experienced at this, particularly someonenear your own age.The key thing in my view is to enjoy the life we have. Sometimesa good movie, book or music, a dinner with good friends, a visitto grandchildren, or volunteer work helping others can do morefor you than a pill. Different things work for different people.For me, the key is not to find something that makes me forgetthat I'm eventually going to die but to find something that isworth living for in spite of that. And it turns out that thereare a huge number of things worth living for. I want to keepenjoying them and living for them right up to my last day if Ican.And finally, I want to emphasize what everyone else has said. Itis not written in stone that you will die in five years. Thereare men in this group and elsewhere who have the same level ofdisease as you and are still alive and symptom free ten or moreyears after being told they were done for. I think you have anexcellent chance of living longer than five years. Furthermore,there are new treatments in the pipeline that will becomeavailable in the next five years. They may not cure the disease,but they might add still more years to your life.Good luck.Alan Win 1 of 4 Sony home entertainment packs thanks to Yahoo!7. Enter now. 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Guest guest Posted November 19, 2009 Report Share Posted November 19, 2009  Randall I think I would have found another surgeon. This is the first I have heard of this. I don't kkow of anyone having RRP that had this happen. Re: [ProstateCancerSupp ort] Yana Updates Tom <tomcw4aaayahoo (DOT) com> wrote:> ... I do not really want to but wonder if at this point in this> process it is time to get on some antianxiety pill. ...Tom,It is absolutely normal to be anxious and depressed after beinggiven a diagnosis like yours. It has happened to almost all ofus. When I was first diagnosed I couldn't think about anythingelse but cancer and death. I couldn't sleep at night. I thoughtof everyone around me as living normal lives while I lived undera death sentence. People would talk to me but I only half heardthem. The television might be on but I only half watched theshow. Music could play and I only half heard it. The other halfof my mind was always thinking about cancer and death. I waspretty upset.An anti-anxiety pill doesn't seem like a bad idea to me. HoweverI think it would be most useful to find a good counselor if youcan who can talk you through this and, if necessary, suggest apill that might help for your doctor to prescribe. I like thatidea better than just going to your doctor and asking for a pill.The problem you are facing is one that most people willeventually face. Everyone will die eventually. We all knowthat. But somehow it gets very much more real when we'reactually diagnosed with a life-threatening illness. We suddenlyhave to think about things that we put off thinking about all ofour lives.I think that a lot of us are able to successfully come to termswith our own mortality and live well in spite of it. That'swhere a good counselor may be able to help more than a pill can.Ideally, it should be a wise person who is him or herself, 60 or70 years old and has faced these issues for him or herself aswell as for others. There are such people around. Perhapssomeone at a local social service agency or the local hospitalcan either fill the bill or recommend someone who can. If youcall them, tell them exactly what your problem is and ask if theyhave someone who is experienced at this, particularly someonenear your own age.The key thing in my view is to enjoy the life we have. Sometimesa good movie, book or music, a dinner with good friends, a visitto grandchildren, or volunteer work helping others can do morefor you than a pill. Different things work for different people.For me, the key is not to find something that makes me forgetthat I'm eventually going to die but to find something that isworth living for in spite of that. And it turns out that thereare a huge number of things worth living for. I want to keepenjoying them and living for them right up to my last day if Ican.And finally, I want to emphasize what everyone else has said. Itis not written in stone that you will die in five years. Thereare men in this group and elsewhere who have the same level ofdisease as you and are still alive and symptom free ten or moreyears after being told they were done for. I think you have anexcellent chance of living longer than five years. Furthermore,there are new treatments in the pipeline that will becomeavailable in the next five years. They may not cure the disease,but they might add still more years to your life.Good luck.Alan Win 1 of 4 Sony home entertainment packs thanks to Yahoo!7. Enter now. No virus found in this incoming message.Checked by AVG - www.avg.com Version: 8.5.425 / Virus Database: 270.14.73/2513 - Release Date: 11/19/09 07:51:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2009 Report Share Posted November 19, 2009 Thank you Damon, I am using all of the spiritual tools I can and other stuff to cope. I need you as well. I will pick up Lance Armstrong's book. I go to chemically nuetered today and begin the process. Sorry I know it shuts off my testosterone and If you know stuff I need to know this let me know. I am grateful for your sensitivity. Tom W. To: ProstateCancerSupport Sent: Wed, November 18, 2009 9:43:19 AMSubject: Re: Yana Updates Tom W, I am beginning my treatments at Loma (pod forming, etc.) next week and have been moved by your comments. I want you to know our thoughts and prayers are with you. It is easy to give up but please keep your chin up (as much as possible) and as you know the mental side and attitude of an individual is extremely powerful (read Lance Armstrong's Bio). Damon From: Tom <tomcw4aaayahoo (DOT) com>To: ProstateCancerSuppo rtyahoogroups (DOT) comSent: Wed, November 18, 2009 9:21:08 AMSubject: Re: [ProstateCancerSupp ort] Yana Updates Alan, Good stuff thank you. I am alone and I feel apart from the normal flow of life and cannot bear to watch or see suffering right now. Typically I am pretty good at all of that and this is the first time I am having those toughts you talked about. I am not suicidal and I have thought about when it gets too bad finding help in dying. I cannot stand the idea of dying in a hospital being poked and prodded and an invalid. Sorry too morose (sp). I woke up early last night. It bothers me that they can extend it but when it gets out of the prostrate area they just delay the outcome and not try to kill it as well. They found it in my node near where my blood vessels fork to my legs. I asked can we take it out-no it spreads- can they radiate that area-no it would damage too many organs and would not kill them all. I woke up thinking lets put a low dosage seed there and try to sheild it from the surrounding tisues and etc. Anyway it is good to have your imput and experiences. Tom W. Tex From: Alan Meyer <ameyer2yahoo (DOT) com>To: ProstateCancerSuppo rtyahoogroups (DOT) comSent: Tue, November 17, 2009 1:54:28 PMSubject: Re: [ProstateCancerSupp ort] Yana Updates Tom <tomcw4aaayahoo (DOT) com> wrote:> ... I do not really want to but wonder if at this point in this> process it is time to get on some antianxiety pill. ...Tom,It is absolutely normal to be anxious and depressed after beinggiven a diagnosis like yours. It has happened to almost all ofus. When I was first diagnosed I couldn't think about anythingelse but cancer and death. I couldn't sleep at night. I thoughtof everyone around me as living normal lives while I lived undera death sentence. People would talk to me but I only half heardthem. The television might be on but I only half watched theshow. Music could play and I only half heard it. The other halfof my mind was always thinking about cancer and death. I waspretty upset.An anti-anxiety pill doesn't seem like a bad idea to me. HoweverI think it would be most useful to find a good counselor if youcan who can talk you through this and, if necessary, suggest apill that might help for your doctor to prescribe. I like thatidea better than just going to your doctor and asking for a pill.The problem you are facing is one that most people willeventually face. Everyone will die eventually. We all knowthat. But somehow it gets very much more real when we'reactually diagnosed with a life-threatening illness. We suddenlyhave to think about things that we put off thinking about all ofour lives.I think that a lot of us are able to successfully come to termswith our own mortality and live well in spite of it. That'swhere a good counselor may be able to help more than a pill can.Ideally, it should be a wise person who is him or herself, 60 or70 years old and has faced these issues for him or herself aswell as for others. There are such people around. Perhapssomeone at a local social service agency or the local hospitalcan either fill the bill or recommend someone who can. If youcall them, tell them exactly what your problem is and ask if theyhave someone who is experienced at this, particularly someonenear your own age.The key thing in my view is to enjoy the life we have. Sometimesa good movie, book or music, a dinner with good friends, a visitto grandchildren, or volunteer work helping others can do morefor you than a pill. Different things work for different people.For me, the key is not to find something that makes me forgetthat I'm eventually going to die but to find something that isworth living for in spite of that. And it turns out that thereare a huge number of things worth living for. I want to keepenjoying them and living for them right up to my last day if Ican.And finally, I want to emphasize what everyone else has said. Itis not written in stone that you will die in five years. Thereare men in this group and elsewhere who have the same level ofdisease as you and are still alive and symptom free ten or moreyears after being told they were done for. I think you have anexcellent chance of living longer than five years. Furthermore,there are new treatments in the pipeline that will becomeavailable in the next five years. They may not cure the disease,but they might add still more years to your life.Good luck.Alan Quote Link to comment Share on other sites More sharing options...
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