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Medical Forum / Diseases and Disorders / Prostate Cancer / December 2004here's an interesting point that most men won't agree with the VA on..
i was going through the packet the VA sent me explaining where they arrived at the various numbers and figures for the amount of my compensation. as i read through them carefully, i came across this point. i'm quoting here..... "we determined that the following condition was related to your military service. we granted 0% evaluation for each disability, however no monetary compensation can be awarded. MEDICAL DESCRIPTION...... impotency associated with residuals of prostate cancer. the law says VA can't pay for disabilities that are less than 10% disabling. " ========= so, what they are saying is that they recognize that you have been given impotence because of the treatment of the prostate cancer, but it isn't worth no 10%. so, guys, all your life, you always thought that erections was the big thing. ever since you were a kid, there was talk about erections and it has became a big part of your life in your adult world. but when it comes to the american gov't - they are saying that it wasn't a big deal at all and certainly, not worth 10% of anything. now, that has me wondering????? are they saying indirectly that they have the biggest erection of all because they are so good at what they do? hummmmmmm ~ curtis knowledge is power - growing old is mandatory - growing wise is optional "Many more men die with prostate cancer than of it. Growing old is invariably fatal. Prostate cancer is only sometimes so." http://community.webtv.net/PALMER_ENT/doc I fall often and can't understand speech in even a slightly noisy environment. I have a hard time understanding speech if a second person in the room is talking, my hearing is barely functional in a noisy group, and I can't understand a word in a din such as a bar -- all the result of service-connected Meinere's disease and ensuing VA surgery. But those disabilities are rated 0% compensation, even though the falls put me down pretty hard sometimes. I WILL get injured -- or worse -- one day, so I'm still fighting the VA after 8 years. (The VA's national chief of otolaryngology e-mailed me his support of my position now, so maybe I'll get something for it this time). Other VA compensation fights have also taken years and several tries, and some I never did win. Lost my marriage pay, for example, because they sort of forgot I was married for a few years, and refused back marriage pay when I realized I wasn't getting it despite still being married to the same lady I married my first year in the military. And, oh, yeah . . . every few years they lose some of my disabilities -- all 19 of 'em once -- and start charging me for treatment and meds again until I raise enough hell to get them reinstated; that takes anywhere from 6 months to three years. That's why I hoard optional meds if possible when I get 'em, 'cause next time they may want to charge me for 'em. The A in VA ain't one of their strong suits. I.P. hi I.P. - i agree on a lot of the points you brought up on the VA. i've had both positive and negative events happen with them. on the positive side, i would have to say that i didn't know that i had pca at the time i checked into the system and it was because of their aggressiveness and checking the psa - immediately gave me a two week course of antibiotics, then checking it again and sending me straight over to the VA hospital for a followup that help save my life. the negative side has been a lot of the typical BS that one who was in the military has been exposed to. the gov't red tape......the doesn't make any sense responses - just because it is policy type answers. i will say that the compensation and pension exam for my hearing was very thorough. it took about 3 1/2 hours for all the testing and you can't fake it. one of the devices they use is a computer device to "blow" on the ear drum and graph out the response of the ear drum. i made a comment to the examiner that i had a bad infection right after i went into the service and they said i had a definite hearing loss - to which he responded, "yes, the right ear" i asked him how could the computer show that when nobody else has been able to let me know and he produced the physical graphic readout of the two ears and you could see the difference. the left handed slap came to me when i wanted to do something for the other veterans who may not be aware that they may have prostate cancer. as i have posted here at the newsgroup each year during sept. the week of prostate cancer awareness, i tried to get some events going at the local VA. i went to the head of the center in august - who by the way is female and has lost a daughter to breast cancer. i was informed that "THEY" are very aware of prostate cancer and there is no need to promote pca awareness at the center. however, when i came into the center during september for my appts. low and behold, there is a huge display for breast cancer awareness. i went straight to the center's office and inquired as to why they do they have a breast cancer awareness but no prostate cancer awareness and was told that they do this because there are female veterans in the military too. i agreed with them but told them there are a LOT more male veterans than female veterans. nothing was ever done to change the display. that was in 2003 and this year 2004, the display was again put up without any awareness of prostate cancer - just breast cancer only. ~ curtis knowledge is power - growing old is mandatory - growing wise is optional "Many more men die with prostate cancer than of it. Growing old is invariably fatal. Prostate cancer is only sometimes so." http://community.webtv.net/PALMER_ENT/doc I called two Seattle VA psychologists, one the mental health clinic chief and one in oncology, to inquire about HT SEs. I thought surely they'd have several hundred HT patients in their experience base. Got the same initial response from both: "Why are you calling ME? I'm a female, and almost all my patients are female. I'm not aware of any psychological impact of PC HT." Stunning, telling, and explained by my geriatric psychologist cousin in the first of these rationale: 1. The military medicine paradigm is getting soldiers back on the battlefield, and that doesn't address nuances such as depression, which is a "female problem" anyway, isn't it? 2. Guys don't want to admit to psych problems. Hell, many ignore heart attacks, broken bones, and bloody bodily fluids. 3. The success of PC treatment is determined by the presence of a pulse at 10 years. QOL is a personal concern. 4. None of these people seem to have read "Male Menopause" by Diamond, which is on its way to me. After all, PC HT is just voluntary, deliberate, sudden, virtually total male menopause, aka andropause. One of the VA psychologists is now polling the staff for more anecdotal feedback on the issue, and inquiring with the endocrinology department (to think I initially considered getting this done by a standalone urology clinic!) to see whether they ought to get involved. EARTH TO VA (and UW): testosterone is an ENDOCRINE and my colon cancer was a neuroENDOCRINE tumor that pumped out a whole menu of endocrines like a fire plug with all its spouts removed, relatively speaking. In fact, I'm adding that thought to the LONG HT decision paper I'm sending my docs next week. And, BTW, my cousin reiterated just last night that, IHO, HT is for the desperate, for whom clinical failure of the initial treatment is getting more alarming than HT SEs. Guess who agrees with that bottom line (delay adjuvant HT until PC symptoms appear after RP or RT): Walsh, the Mayo Clinic, and the American Cancer Society. So far I see no reason to fight tha t tide. I.P. "c palmer" <PALMER_ENT@webtv.net> wrote > > i went straight to the center's office and inquired as to why do > they have a breast cancer awareness but no prostate cancer awareness and [quoted text clipped - 3 lines] > display. that was in 2003 and this year 2004, the display was again put > up without any awareness of prostate cancer - just breast cancer only. On December 29, I.P. Freely wrote, in pertinent part: > > ...........my cousin reiterated just last night that, IHO, HT is for the [quoted text clipped - 3 lines] > Clinic, and the American Cancer Society. So far I see no reason to fight tha > t tide. Adjuvant HT aka ADT is very commonly employed in treatment of high-risk PCa such as mine and, IIRC, IP's. It seems to me that if one fails to act until symptoms appear, one has conceded the initiative to the disease and it is then probably too late for treatment to be efficacious. I'd very much appreciate referral to citations in the sources IP mentions above. I want to see the justification. Thanks! Steve J __ "Do not compute the totality of your poultry population until all the manifestations of incubation have been entirely completed." --William Jennings Bryan (1860-1925) - American lawyer and politician. "Stephen Jordan" <mycroftscj@earthlink.net> wrote > > I'd very much appreciate referral to citations in the sources IP > mentions above. I want to see the justification. I would assume primary citations will surface if one digs through the secondary sources I mentioned, among others. I just don't have the time or inclination to follow every claim to its source, especially given the weight of the secondary sources I reference and given the number of trials which agree. Even the most optimistic sources I've found offer only a 30% change in 5-year survivability, with every other source running more like a 0%-20% improvement and no mention of SEs or QOL. The very men who are at greatest risk of recurrence -- e.g., Gleason 8-10, T3, seminal vesicle involvement, or worse -- are the ones lost likely to have a high percentage of AIPC, which ADT does not help, conceals (by suppressing PSA), and may even exacerbate (by accelerating clinical failure and increasing tumor virulence). I do track down lesser and more singular claims -- such as those for Casodex monotherapy, Provenge, MABs, etc. -- to clinical trials, at least as far as Abstract Conclusions and sometimes full reports and critiques of same. I'm having a real hard time finding any incentive for HT prior to clinical failure (symptoms), let alone biochemical (PSA) failure. But then different folks will have different valid criteria for their choices, too. My personal justification is the low therapeutic index (ratio of benefit to SEs) I'm finding for early (pre-failure) adjuvant (post RP or RT) ADT, and the number and stature of the expert individuals, institutions, and agencies which concur. My research so far, from clinical trials to my poll of this forum, pushes me towards the side which asks the doctor, "Show me some proof early adjuvant ADT is worth its expected, common SEs." Some (many?) PC doctors consider it a victory when a pt spends his last 59.0 -- or better yet 119.0 months -- bitching at his wife and too tired to work or play, then 5.0 weeks confined to bed with extreme fatigue, a broken hip, and a spinal cord severed by collasped vertebrae, and unresponsive from pain-killers because our whole government from Bush to beat cops say marijuana is wrong even if it's a bone cancer patient's only way to remain conscious through his last month with his wife. While that's fine if it's what the patient wants, it's unconscionable if the pt isn't given the whole picture before making the choice and during the first year on ADT. Far too many docs offer a 5-10-minute pitch for early adjuvant ADT; begin ADT before having the patient "get a degree" in ADT; don't take baseline data on such things as T, AIPC biomarkers, BMD, QOL factors; don't track those data closely; don't pretreat with breast radiation and co-treat with BMD preservers; don't advise pts of the increasing likelihood of permanent SEs as ADT time approaches two years, maybe even just one; and don't advise us of the perils and limited benefit of IAD. I've dropped trou and bent over ENUFF for these guys; I'm now challenging their instructions to grab my ankles compliantly, and am instead asking them to convince me I'm making a bad decision. Fortunately my primary docs are academicians who wallow in clinical trials, so they should be able to quote me chapter and verse as proof . . . or not. I'm not angry, or even disappointed; I'm just more educated now, they have praised me every step of the way for my involvement and education, and their parting instructions last month were, "Put on your hip boots, hit the Internet and the literature, and get back to us next month". They may regret that advice. '-) I.P. Got the same initial response from both: "Why are you calling ME? I'm a female, and almost all my patients are female. I'm not aware of any psychological impact of PC HT." ================ i forgot to mention that after i got over the initial shock of being told that i had pca by the surgeon. he ask me if i wanted to talk to a radiologist. i explained, "no, i've got an appt with the VA doctor at the evansville center and would bounce some ideas off them." i should explain this is my first appt. with the evansville doctor the following week. when i see the doctor, he's a she. doesn't bother me because they are suppose to be treating the patient - not worry about the sex of the patient. so, i explained that i was told that i had pca last week and i had this list of about ten questions that i was going to ask about. as soon i as produced this list, she said to me, " i don't know anything about prostate cancer!!! now, what other problems do you have?" i requested another psa test be ran because it had been over 60 days and wanted to psa velocity rate. after the appt, i had to lab to get the blood drawn and they didn't have a test for psa listed. i went back to the clinic and talked with the head nurse. i explained why i wanted the psa test and she said she would talk with the doctor. later, she came back and told me that the doctor said, "i know what's good for the patient and he got ALL the tests he needs!!!" i replied that, "i know what's good for the patient and he needs a new doctor!!!!" and with that i went directly to the patient advocate's office - explained my case - and got a new doctor and a psa test. my wife couldn't believe what she was seeing and responded, "how in the world could they run a clinic for men in the age group where prostate cancer could be more common and not have a doctor admit they know nothing about it?" ~ curtis knowledge is power - growing old is mandatory - growing wise is optional "Many more men die with prostate cancer than of it. Growing old is invariably fatal. Prostate cancer is only sometimes so." http://community.webtv.net/PALMER_ENT/doc This was in 1978, I presume? Sheesh! I.P. "c palmer" <PALMER_ENT@webtv.net> wrote > > i forgot to mention that after i got over the initial shock of being > told that i had pca by the surgeon. he ask me if i wanted to talk to a [quoted text clipped - 27 lines] > cancer could be more common and not have a doctor admit they know > nothing about it?" Oyez . . . I forgot to mention a subjective factor that I believe (and Walsh mentions) further broadens the early ADT credibility gap: the drug companies make gigantic profits off ADT. Now THAT should make us suspect it right off the bat. I'm not being facetious; as much stake as they have in this, and the best improvement I can find is an unsupported, specific-scenario, 30% improvement in 5-year survivability (look at the narrow benefit range for HT in the Kattan nomogram)? And as much as you KNOW they try to suppress SE publicity, the list and commonality and severity of SEs just keep growing the further we dig? No WONDER Walsh is so strongly against ADT without symptoms or positive bone scan. I.P. "c palmer" <PALMER_ENT@webtv.net> wrote > when i see the doctor, he's a she. doesn't bother me because they are suppose to be treating the patient i explained that i was told that i had pca last week and i had this list of about ten questions that i was going to ask about. as soon i as produced this list, she said to me, " i don't know anything about prostate cancer!!! now, what other problems do you have?" From: fuhgeddaboutit@noway.not (I.P. Freely) This was in 1978, I presume? Sheesh! I.P. ==========would you believe feb. 12, 2003? ~ curtis knowledge is power - growing old is mandatory - growing wise is optional "Many more men die with prostate cancer than of it. Growing old is invariably fatal. Prostate cancer is only sometimes so." http://community.webtv.net/PALMER_ENT/doc <snip> >i replied that, "i know what's good for the patient and he needs a new >doctor!!!!" and with that i went directly to the patient advocate's >office - explained my case - and got a new doctor and a psa test. <snip> Shades of my first Uro & Female Rad Oncologist encounter. When he referred me, the Uro didn't forward my TRUS Biopsy Report to the Female Radiation Oncologist, hereinafter referred to as the FRO. So for my first consultation with her, I might well have had a sore toe!. Lucky for me the FRO was consulting (by visit) in a room in Fremantle Hospital, the same hospital where I had the Biopsy done 2 wks prior. I told the FRO my Biopsy Report would be on the hospital's computer, and told her to Download it, Print it and give me a Copy. She couldn't operate the Computer Terminal in her room, so had to get one of the Clerical Staff at the Reception Desk do it for her. My wife was also present and expressed her disgust. This blatant display of incompetence caused us to snatch up my copy of my Biopsy Report and stomp out of her room, looking for another Treatment option, which luckily I found thru a local contact on this NG. -- Reader to complete... -- Please reply to this ng as my email adress is fake: -- Regards -- CC > ========= > > so, what they are saying is that they recognize that you have been given > impotence because of the treatment of the prostate cancer, but it isn't > worth no 10%. Curtis, Its my understanding that the impotence post RPP falls under Entitlement to SMK - Special Monthly Compensation for anatomical Loss of Creative Organ which is separate from the disability percentage payment. Its not alot of money but I something I think you should be entitled to. Sandi From: sjbenton@earthlink.net (sandi) ========= so, what they are saying is that they recognize that you have been given impotence because of the treatment of the prostate cancer, but it isn't worth no 10%. ~ curtis --------- Curtis, Its my understanding that the impotence post RPP falls under Entitlement to SMK - Special Monthly Compensation for anatomical Loss of Creative Organ which is separate from the disability percentage payment. Its not alot of money but I something I think you should be entitled to. Sandi =============== hi sandi - you are right and i'm suppose to be getting that. but here's where that number comes from. i think you will find this interesting. the numbers come from the female side of equation. when i ask them about it, they said that if a woman was in the service and had part of her breast or breasts removed or a partial or full hysterectomy, then there has a be a difference of compensation based on what parts are removed and affected. but for the male, it just the one item of interest and that is all they assign is the one value and nothing for the erection although they recognize that it is a disability, just not worth paying for. if you think about female breasts and their own term Compensation for anatomical Loss of Creative Organ - that might make a little more sense. ~ curtis knowledge is power - growing old is mandatory - growing wise is optional "Many more men die with prostate cancer than of it. Growing old is invariably fatal. Prostate cancer is only sometimes so." http://community.webtv.net/PALMER_ENT/doc Dang . . . my wife rated my potence at least a 0.15. I.P. "c palmer" <PALMER_ENT@webtv.net> wrote > ========= > so, what they are saying is that they recognize that you have been given > impotence because of the treatment of the prostate cancer, but it isn't > worth 10%. Sandi's heads-up also helps my hearing/balance VA case. I Googled creative organs VA, scrolled past the breast cancer section, and found that the same bill and philosophy address other organs, including partial hearing loss. Maybe I finally have a 2x4 to hit these guys with. My PC isn't service connected, but my ear problems are. Thanks, Sandi. I.P. "sandi" <sjbenton@earthlink.net> wrote RPP falls under > Entitlement to > SMK - Special Monthly Compensation for anatomical Loss of Creative > Organ which is separate from the disability percentage payment. Its > not alot of money but I something I think you should be entitled to. > Sandi hi I.P. - email me privately, i have some extra information about your hearing claim. ~ curtis knowledge is power - growing old is mandatory - growing wise is optional "Many more men die with prostate cancer than of it. Growing old is invariably fatal. Prostate cancer is only sometimes so." http://community.webtv.net/PALMER_ENT/doc >i was going through the packet the VA sent me explaining where they > arrived at the various numbers and figures for the amount of my [quoted text clipped - 34 lines] > invariably fatal. Prostate cancer is only sometimes so." > http://community.webtv.net/PALMER_ENT/doc Was your PC service connected? Are you in the Agent Orange Registry from Vietnam?? If so, something smells real bad at the VA. PC alone is worth at least 60%. A couple friends of mine got it and never went to the VA until PC was discovered by civilian physicians. They applied and were granted 60%. Was your PC service connected? Are you in the Agent Orange Registry from Vietnam?? If so, something smells real bad at the VA. PC alone is worth at least 60%. A couple friends of mine got it and never went to the VA until PC was discovered by civilian physicians. They applied and were granted 60%. ============= hi stafford - i don't know what to tell you about your friend's 60%. there has to be more to it - like a ptsd claim with it or something. yes, i'm a vietnam vet and in the agent orange registry and have the paperwork that says i was agent orange infected. but here's the facts. you are paid 100% compensation for a period of 6 months after your treatment, then it is reduced to 20% and they will throw in a little extra for the loss of use of a creative organ and that is all you are going to get. so, i don't have an answer for your friend's 60%. ~ curtis knowledge is power - growing old is mandatory - growing wise is optional "Many more men die with prostate cancer than of it. Growing old is invariably fatal. Prostate cancer is only sometimes so." http://community.webtv.net/PALMER_ENT/doc > Was your PC service connected? Are you in the Agent Orange Registry from > Vietnam?? If so, something smells real bad at the VA. PC alone is worth [quoted text clipped - 22 lines] > invariably fatal. Prostate cancer is only sometimes so." > http://community.webtv.net/PALMER_ENT/doc Well all cases are adjuticated by different boards. PC is listed as one of the ailments connected specifically to AO. The appeal route should be taken with a good VSO. I think you will get that claim raised pronto. They gave me 30% for high blood pressure under the guise of heart disease. My current VA doc says I have no such thing, although I do have high blood pressure which is not compensable. I don't need the 30% either as I am now 100% retired and will not be seeking any benefits from it. Now IF I have PC attributed to AO, you damned right I'm going to fight for it, not only because my compensation comes out of my military retired pay, but the death benefit is a lot higher in case I should die from it. I need at least 50% to qualify for the recently passed Concurrent receipt authorization where the money is no longer taken out of your retired pay but paid to you directly 10% a year for 10 years (100% phase in). That sucks too, but it's better than nothing at all. The public doesn't have a clue what's happening to military retirees that are also receiving compensation from the VA for a service connected disability. We are the only group of former Government employees that have our compensation deducted from our retired pay. If I was retired Civil Service and applied for VA Comp for something that happened on active duty, payments would be separate. I'll never live long enough to see this inequity die. Well all cases are adjuticated by different boards. PC is listed as one of the ailments connected specifically to AO. The appeal route should be taken with a good VSO. I think you will get that claim raised pronto. They gave me 30% for high blood pressure under the guise of heart disease. My current VA doc says I have no such thing, although I do have high blood pressure which is not compensable. I don't need the 30% either as I am now 100% retired and will not be seeking any benefits from it. Now IF I have PC attributed to AO, you damned right I'm going to fight for it, not only because my compensation comes out of my military retired pay, but the death benefit is a lot higher in case I should die from it. I need at least 50% to qualify for the recently passed Concurrent receipt authorization where the money is no longer taken out of your retired pay but paid to you directly 10% a year for 10 years (100% phase in). That sucks too, but it's better than nothing at all. The public doesn't have a clue what's happening to military retirees that are also receiving compensation from the VA for a service connected disability. We are the only group of former Government employees that have our compensation deducted from our retired pay. If I was retired Civil Service and applied for VA Comp for something that happened on active duty, payments would be separate. I'll never live long enough to see this inequity die. ============= hi stafford - i don't know what to tell you as to why the difference in compensation pay. i know this is what it is right now - today. but, i also know that back in the early 90's if you served in the waters off the shore of vietnam and you got pca, you were eligible. that is not the case now. so, you could very well be right in what you've said, and then the rules got changed. i definitely agree that the military is in a unique boat of its own. can't double dip they say - hogwash. just because you have the same employer shouldn't make any difference. the gov't hires a person to do a job and it should not make any difference if they have qualified for benefits from a previous activity. otherwise, we are nothing but whores, working at a reduced rate of pay - a second class citizen. ~ curtis knowledge is power - growing old is mandatory - growing wise is optional "Many more men die with prostate cancer than of it. Growing old is invariably fatal. Prostate cancer is only sometimes so." http://community.webtv.net/PALMER_ENT/doc
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