Guest guest Posted November 28, 2002 Report Share Posted November 28, 2002 Lynn, It's my understanding that Medicare rules about Power Wheel Chairs are very strict and will approve a PWC only if you need it 100% of the time -- inside the house as well as outside. I have supplemental Medicare coverage through Rocky Mountain Health Plan (an HMO). Their viewpoint is more relaxed. Rather than wait until you fall and break a leg or hip and pay for that treatment as well as pay for the NOW required PWC, they can be talked into the approval process easily if your neurologist and primary care doctor believe you would be at risk for falling if you don't have a PWC even if you still can walk some of the time with a walker in the house. It was the HMO's decision as my primary coverer to okay my PWC, so I didn't have any trouble even though I use a walker indoors but always use the wheelchair outside. I think that Medicare (if that's the only coverage you have) can be convinced if your doctor & neurologist present a strong enough case that you really do require a PWC. If may take some time for them to approve it -- and you can appeal should they deny your claim the first time. If they approve it they will pay 80% of the cost. Any supplemental Medicare coverage you have may pay the additional 20% -- mine didn't. Additionally, if you are under MDA coverage (ie: were diagnosed at a MDA clinic and are registered with them) you can submit any outstanding cost to them and they will pay up to $1700 towards the purchase of a PWC after Medicare pays/or doesn't (once every 5 years). They also have an annual allowed $300 for cost for repairing PWCs. And should you be denied, they also have a legal council which might help you in your appeal. At any event the Medical Supply company you decide on (preferably one nearby which carries the Jazzy line and can assist in reprogramming and repairs) should be able to answer all of your questions and help you through this process. Medicare needs to know that you require this PWC on a full time basis and your neurologist needs to prescribe the PWC and justify your claim by stating that you have a progressive disease that is causing continual weakness in arms and legs and that you require a PWC for mobility at home as well as for traveling outside of your home. The 50/50 chance you were quoted is because Medicare has these strict guidelines which have to be followed for approval, but if your neurologist knows that you need the PWC now he will also know how to get the approval from Medicare. Lyndal (from Colorado) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2002 Report Share Posted November 28, 2002 Lynn, It's my understanding that Medicare rules about Power Wheel Chairs are very strict and will approve a PWC only if you need it 100% of the time -- inside the house as well as outside. I have supplemental Medicare coverage through Rocky Mountain Health Plan (an HMO). Their viewpoint is more relaxed. Rather than wait until you fall and break a leg or hip and pay for that treatment as well as pay for the NOW required PWC, they can be talked into the approval process easily if your neurologist and primary care doctor believe you would be at risk for falling if you don't have a PWC even if you still can walk some of the time with a walker in the house. It was the HMO's decision as my primary coverer to okay my PWC, so I didn't have any trouble even though I use a walker indoors but always use the wheelchair outside. I think that Medicare (if that's the only coverage you have) can be convinced if your doctor & neurologist present a strong enough case that you really do require a PWC. If may take some time for them to approve it -- and you can appeal should they deny your claim the first time. If they approve it they will pay 80% of the cost. Any supplemental Medicare coverage you have may pay the additional 20% -- mine didn't. Additionally, if you are under MDA coverage (ie: were diagnosed at a MDA clinic and are registered with them) you can submit any outstanding cost to them and they will pay up to $1700 towards the purchase of a PWC after Medicare pays/or doesn't (once every 5 years). They also have an annual allowed $300 for cost for repairing PWCs. And should you be denied, they also have a legal council which might help you in your appeal. At any event the Medical Supply company you decide on (preferably one nearby which carries the Jazzy line and can assist in reprogramming and repairs) should be able to answer all of your questions and help you through this process. Medicare needs to know that you require this PWC on a full time basis and your neurologist needs to prescribe the PWC and justify your claim by stating that you have a progressive disease that is causing continual weakness in arms and legs and that you require a PWC for mobility at home as well as for traveling outside of your home. The 50/50 chance you were quoted is because Medicare has these strict guidelines which have to be followed for approval, but if your neurologist knows that you need the PWC now he will also know how to get the approval from Medicare. Lyndal (from Colorado) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2002 Report Share Posted November 28, 2002 I had no trouble at all. They even checked with my Dr.filled out the papers I signed it and kept the chair. Sence then I've had to have the motor replaced several other things and I only had to pay a small part of the bill, Medicare has been real good at picking up the tab. MEDICARE > I'm in the process of trying to get a JAZZY Power chair. I was told > yesturday, that even with all the papers filled out by the doctor, it > was still a 50/50 chance they would not approve it. What I wanti to > know, did anybody have trouble like that? I'm on a fixed income, and > can not dish out that kind of money if I know I might not get my > money returned. > Thanks in advance, and hope everybody has a Happy and Safe Holidays!!! > LYNN from Az. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2002 Report Share Posted November 28, 2002 I had no trouble at all. They even checked with my Dr.filled out the papers I signed it and kept the chair. Sence then I've had to have the motor replaced several other things and I only had to pay a small part of the bill, Medicare has been real good at picking up the tab. MEDICARE > I'm in the process of trying to get a JAZZY Power chair. I was told > yesturday, that even with all the papers filled out by the doctor, it > was still a 50/50 chance they would not approve it. What I wanti to > know, did anybody have trouble like that? I'm on a fixed income, and > can not dish out that kind of money if I know I might not get my > money returned. > Thanks in advance, and hope everybody has a Happy and Safe Holidays!!! > LYNN from Az. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2002 Report Share Posted November 28, 2002 Hi Lynn ~ I was a salesperson for a home-care - hospital supply company, for many years. I have PLS also and lost my job. All I can tell you it has all to do with the dr. and him filling in the papers the right way. I do not know if the laws in your state are different then New York. But to get a power Jazzy chair. you have to have no use of your hands and arms to get a power chair. The Dr has to write that you can no longer use your arms to push a standard w/chair. As here in NY you have to have a orthopedic dr sign the forms. If Medicare turns it down. Do not give up -Also make sure you get a letter of Justification from your Dr's to go along with the forms to Medicare. But, don't give up on it. Medicare always turns these things down. Also always get copies of every letter and every statement you send. Try and find a big homecare company where you live, they should help you get the chair you want and get the forms filled out right. Hope this helps you....... Joan MEDICARE I'm in the process of trying to get a JAZZY Power chair. I was told yesturday, that even with all the papers filled out by the doctor, it was still a 50/50 chance they would not approve it. What I wanti to know, did anybody have trouble like that? I'm on a fixed income, and can not dish out that kind of money if I know I might not get my money returned. Thanks in advance, and hope everybody has a Happy and Safe Holidays!!! LYNN from Az. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2002 Report Share Posted November 29, 2002 Lynn, Most of the suppliers of the power wheelchairs seem to think since we can still walk, that Medicare won't approve us for the chair. Not so. All it takes for us is the doctor to fill out the medical necessity form. In my case, it was to conserve energy and allow me public access. Since my arms are involved I can't be expected to use a manual chair. The diagnosis of PLS falls under the ALS category, and since this is a progressive disease they don't expect your condition to improve. So buying a power wheelchair is not a temporary need, but a permanent one. Most suppliers don't understand this. Don't buy they chair until the supplier gets the approval from Medicare. Get your prescription from the doctor first thing. Then take that to your supplier. They will do the rest. Thomson Solana Beach, Ca Visit www.als-pls.org and www.geocities.com/mdmfoo/pls.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2007 Report Share Posted July 31, 2007 Peggy, Several of my friends have hit the mark and are not too pleased with the part D drug coverage. I got a couple more years and I am hoping some bugs are worked out by then. It is so hard to deal with all this stuff when you are feeling weak. Ask a pharmacist. I have been told that they give good advice on the Medicare thing. Take it easy and try to rest. Got some miseries going on in my family and sleep has not been in my vocabulary for awhile. Life can get so difficult. Prayers to you, Joyce D.>> WARNING< WARNING...> Group when you get close to 65 actually 64 start checking into Medicare and> all the different plans. I am physically sick at my stomach.> > This is just not right to make thing this complicated.> I NEED MORE 02..> AARP is winning so far...> > still have to work on the part D his one that is for the RX part..> > Hope everyone gets to sleep ok. I have had about three hours sleep the past> two nights. This one isn't looking to good..> > Peggy> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2007 Report Share Posted July 31, 2007 Peggy, Several of my friends have hit the mark and are not too pleased with the part D drug coverage. I got a couple more years and I am hoping some bugs are worked out by then. It is so hard to deal with all this stuff when you are feeling weak. Ask a pharmacist. I have been told that they give good advice on the Medicare thing. Take it easy and try to rest. Got some miseries going on in my family and sleep has not been in my vocabulary for awhile. Life can get so difficult. Prayers to you, Joyce D.>> WARNING< WARNING...> Group when you get close to 65 actually 64 start checking into Medicare and> all the different plans. I am physically sick at my stomach.> > This is just not right to make thing this complicated.> I NEED MORE 02..> AARP is winning so far...> > still have to work on the part D his one that is for the RX part..> > Hope everyone gets to sleep ok. I have had about three hours sleep the past> two nights. This one isn't looking to good..> > Peggy> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2007 Report Share Posted July 31, 2007 good advice on the Medicare thing. Take it easy and try to rest. Got some miseries going on in my family and sleep has not been in my vocabulary for awhile. Life can get so difficult. Prayers to you, Joyce D. our prayers************************************** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2007 Report Share Posted July 31, 2007 good advice on the Medicare thing. Take it easy and try to rest. Got some miseries going on in my family and sleep has not been in my vocabulary for awhile. Life can get so difficult. Prayers to you, Joyce D. our prayers************************************** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2007 Report Share Posted August 2, 2007 I watched a segment on the news about the medicare drug mess and they said to get your doctor involved and he /she may need to write a letter of medical necessity. So also keep with dateline/ABC new shows they are interested in this and could help with all the mazes that we seem to go through. Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2009 Report Share Posted July 8, 2009 Tom, Medicare covers both protons and brachytherapy. Many men have had issues with health insurance coverage for protons, but not those on Medicare. No fights that I am aware of. Laurel > > > Watchful waiting was discussed but quickly dismissed as the > > appropriate solution. I wondered why, and of course the answer > > was that I'm relatively young. BUT, I've seen quite a few > > posters to this site who are younger than I am, and some of > > them have chosen not to be aggressive in treatment. > > Well, youth is certainly a factor. Cancers that are not > threatening for the next ten or fifteen years can become deadly > after that, and it can be easier to treat them while they are > still small. > > > Re: Lupron, I was told that it was essential to get my prostate > > down to size and ready for brachytherapy. > > That sounds reasonable too. It can be difficult to treat a > really large prostate, and Lupron will shrink it significantly. > > > ly, I haven't seen much effect. > > Lupron works by stimulating the production of a hormone that > signals the testicles to produce *more* testosterone, not less. > For a week or more, the testicles respond and the level of > testosterone in your body actually increases. Then the whole > system becomes overloaded and the testicles shut down, producing > very little testosterone. > > The effects should be kicking in about now. You will probably > soon experience the usual side effects - hot flushes, drop in > libido (which might have been elevated during the first couple of > weeks), and some reduction in energy. It will be important to > keep up a good level of exercise and to avoid over eating since > many men experience weight gain. > > > But what I regret the most was the microwave procedure, given > > to prevent urinary retention, and the catheter required > > afterwards. I've had the catheter out for five days and I'm > > still in pain and urinating every 20 minutes or so (I'm pushing > > fluids). The alternative to the microwave presented was the > > green laser, and, frankly, I'd hoped to do without either, but > > it's a bit late to worry about that. I've been taking an > > anti-inflammatory and have been taking Detrol & Flomax for > > years, so I assume I'll at least continue with the Flomax. > > That sounds pretty awful. I hope it gets better soon. I > think you should ask the doctor about the scheduling of the > brachytherapy procedure. I'm wondering if it should be > delayed until the other problem clears up so that you don't > have to deal with both at once, and so that the radiation > doesn't make an existing problem worse. > > > How would the group compare brachytherapy to proton beam? The > > latter was also dismissed as a solution during my deliberations > > with the urologist and radiological oncologist. > > The theory behind proton beam therapy is that the protons, being > massive particles, deposit most of their energy in a narrow band > of tissue (see the Wikipedia article on " Bragg Peak " for why that > is so), whereas externally beamed x-rays deliver energy to all of > the tissue in the path of the beam, including tissue in front of > and behind the prostate. Therefore, in theory, proton beam > should have about the same effectiveness as external beam x-ray > therapy but with reduced side effects on non-cancerous tissue > outside the prostate. To the best of my knowledge, no one claims > that proton beam therapy is more effective than x-ray therapy, > only that side effects are less. > > Of course in theory, theory and practice are the same. In > practice, well ... > > X-ray therapy has gotten quite refined. I have not myself seen > any evidence that the side effects from proton beam therapy are > less than those from x-rays. Furthermore, brachytherapy, if done > properly, also delivers very little energy to tissues in front of > or behind the prostate because the radiation doesn't come from > outside. It comes from inside the prostate itself, and is " cool " > enough that it typically only ionizes tissue within a couple of > millimeters of each individual seed. That's why they plant 75 - > 100 seeds or so instead of just one. > > I am not an expert in radiation oncology and you shouldn't take > my views on this to be authoritative. However I personally am > not aware of any real world, practical advantage of proton beams > that justifies the extra cost. I have not seen any study that > proves that effectiveness is greater or side effects are less. > > I am aware of advantages and disadvantages of external beam vs. > brachytherapy. External beam is more appropriate if and when it > is suspected that the cancer extends to tissue around the > prostate because brachytherapy is less likely to treat that > area. However, for Gleason 6, PSA < 10 cancer, it is my > understanding that the cancer is very likely to be fully > contained in the prostate and that brachytherapy and external > beam therapies (including proton beam therapy) have about the > same (quite high) cure rates. > > Brachytherapy has the advantage over external beam that only one > procedure is needed. You go into the hospital, get it done, and > you're usually out the next day. That's it. External beam > requires about 40+ days of treatment, though it does not require > any surgical procedures as brachytherapy does. > > That's my inexpert 2 cents on the subject. > > Alan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2009 Report Share Posted July 8, 2009 Tom, Medicare covers both protons and brachytherapy. Many men have had issues with health insurance coverage for protons, but not those on Medicare. No fights that I am aware of. Laurel > > > Watchful waiting was discussed but quickly dismissed as the > > appropriate solution. I wondered why, and of course the answer > > was that I'm relatively young. BUT, I've seen quite a few > > posters to this site who are younger than I am, and some of > > them have chosen not to be aggressive in treatment. > > Well, youth is certainly a factor. Cancers that are not > threatening for the next ten or fifteen years can become deadly > after that, and it can be easier to treat them while they are > still small. > > > Re: Lupron, I was told that it was essential to get my prostate > > down to size and ready for brachytherapy. > > That sounds reasonable too. It can be difficult to treat a > really large prostate, and Lupron will shrink it significantly. > > > ly, I haven't seen much effect. > > Lupron works by stimulating the production of a hormone that > signals the testicles to produce *more* testosterone, not less. > For a week or more, the testicles respond and the level of > testosterone in your body actually increases. Then the whole > system becomes overloaded and the testicles shut down, producing > very little testosterone. > > The effects should be kicking in about now. You will probably > soon experience the usual side effects - hot flushes, drop in > libido (which might have been elevated during the first couple of > weeks), and some reduction in energy. It will be important to > keep up a good level of exercise and to avoid over eating since > many men experience weight gain. > > > But what I regret the most was the microwave procedure, given > > to prevent urinary retention, and the catheter required > > afterwards. I've had the catheter out for five days and I'm > > still in pain and urinating every 20 minutes or so (I'm pushing > > fluids). The alternative to the microwave presented was the > > green laser, and, frankly, I'd hoped to do without either, but > > it's a bit late to worry about that. I've been taking an > > anti-inflammatory and have been taking Detrol & Flomax for > > years, so I assume I'll at least continue with the Flomax. > > That sounds pretty awful. I hope it gets better soon. I > think you should ask the doctor about the scheduling of the > brachytherapy procedure. I'm wondering if it should be > delayed until the other problem clears up so that you don't > have to deal with both at once, and so that the radiation > doesn't make an existing problem worse. > > > How would the group compare brachytherapy to proton beam? The > > latter was also dismissed as a solution during my deliberations > > with the urologist and radiological oncologist. > > The theory behind proton beam therapy is that the protons, being > massive particles, deposit most of their energy in a narrow band > of tissue (see the Wikipedia article on " Bragg Peak " for why that > is so), whereas externally beamed x-rays deliver energy to all of > the tissue in the path of the beam, including tissue in front of > and behind the prostate. Therefore, in theory, proton beam > should have about the same effectiveness as external beam x-ray > therapy but with reduced side effects on non-cancerous tissue > outside the prostate. To the best of my knowledge, no one claims > that proton beam therapy is more effective than x-ray therapy, > only that side effects are less. > > Of course in theory, theory and practice are the same. In > practice, well ... > > X-ray therapy has gotten quite refined. I have not myself seen > any evidence that the side effects from proton beam therapy are > less than those from x-rays. Furthermore, brachytherapy, if done > properly, also delivers very little energy to tissues in front of > or behind the prostate because the radiation doesn't come from > outside. It comes from inside the prostate itself, and is " cool " > enough that it typically only ionizes tissue within a couple of > millimeters of each individual seed. That's why they plant 75 - > 100 seeds or so instead of just one. > > I am not an expert in radiation oncology and you shouldn't take > my views on this to be authoritative. However I personally am > not aware of any real world, practical advantage of proton beams > that justifies the extra cost. I have not seen any study that > proves that effectiveness is greater or side effects are less. > > I am aware of advantages and disadvantages of external beam vs. > brachytherapy. External beam is more appropriate if and when it > is suspected that the cancer extends to tissue around the > prostate because brachytherapy is less likely to treat that > area. However, for Gleason 6, PSA < 10 cancer, it is my > understanding that the cancer is very likely to be fully > contained in the prostate and that brachytherapy and external > beam therapies (including proton beam therapy) have about the > same (quite high) cure rates. > > Brachytherapy has the advantage over external beam that only one > procedure is needed. You go into the hospital, get it done, and > you're usually out the next day. That's it. External beam > requires about 40+ days of treatment, though it does not require > any surgical procedures as brachytherapy does. > > That's my inexpert 2 cents on the subject. > > Alan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2009 Report Share Posted July 8, 2009 Just a little clarification. Loma is approved but the other centers are under review for coverage. My understanding is that they are currently covered but that may change in the future. Laurel was a final decision made yet? Kathy From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Laurel Sent: Wednesday, July 08, 2009 12:22 PM To: ProstateCancerSupport Subject: Re: Medicare Tom, Medicare covers both protons and brachytherapy. Many men have had issues with health insurance coverage for protons, but not those on Medicare. No fights that I am aware of. Laurel > > > Watchful waiting was discussed but quickly dismissed as the > > appropriate solution. I wondered why, and of course the answer > > was that I'm relatively young. BUT, I've seen quite a few > > posters to this site who are younger than I am, and some of > > them have chosen not to be aggressive in treatment. > > Well, youth is certainly a factor. Cancers that are not > threatening for the next ten or fifteen years can become deadly > after that, and it can be easier to treat them while they are > still small. > > > Re: Lupron, I was told that it was essential to get my prostate > > down to size and ready for brachytherapy. > > That sounds reasonable too. It can be difficult to treat a > really large prostate, and Lupron will shrink it significantly. > > > ly, I haven't seen much effect. > > Lupron works by stimulating the production of a hormone that > signals the testicles to produce *more* testosterone, not less. > For a week or more, the testicles respond and the level of > testosterone in your body actually increases. Then the whole > system becomes overloaded and the testicles shut down, producing > very little testosterone. > > The effects should be kicking in about now. You will probably > soon experience the usual side effects - hot flushes, drop in > libido (which might have been elevated during the first couple of > weeks), and some reduction in energy. It will be important to > keep up a good level of exercise and to avoid over eating since > many men experience weight gain. > > > But what I regret the most was the microwave procedure, given > > to prevent urinary retention, and the catheter required > > afterwards. I've had the catheter out for five days and I'm > > still in pain and urinating every 20 minutes or so (I'm pushing > > fluids). The alternative to the microwave presented was the > > green laser, and, frankly, I'd hoped to do without either, but > > it's a bit late to worry about that. I've been taking an > > anti-inflammatory and have been taking Detrol & Flomax for > > years, so I assume I'll at least continue with the Flomax. > > That sounds pretty awful. I hope it gets better soon. I > think you should ask the doctor about the scheduling of the > brachytherapy procedure. I'm wondering if it should be > delayed until the other problem clears up so that you don't > have to deal with both at once, and so that the radiation > doesn't make an existing problem worse. > > > How would the group compare brachytherapy to proton beam? The > > latter was also dismissed as a solution during my deliberations > > with the urologist and radiological oncologist. > > The theory behind proton beam therapy is that the protons, being > massive particles, deposit most of their energy in a narrow band > of tissue (see the Wikipedia article on " Bragg Peak " for why that > is so), whereas externally beamed x-rays deliver energy to all of > the tissue in the path of the beam, including tissue in front of > and behind the prostate. Therefore, in theory, proton beam > should have about the same effectiveness as external beam x-ray > therapy but with reduced side effects on non-cancerous tissue > outside the prostate. To the best of my knowledge, no one claims > that proton beam therapy is more effective than x-ray therapy, > only that side effects are less. > > Of course in theory, theory and practice are the same. In > practice, well ... > > X-ray therapy has gotten quite refined. I have not myself seen > any evidence that the side effects from proton beam therapy are > less than those from x-rays. Furthermore, brachytherapy, if done > properly, also delivers very little energy to tissues in front of > or behind the prostate because the radiation doesn't come from > outside. It comes from inside the prostate itself, and is " cool " > enough that it typically only ionizes tissue within a couple of > millimeters of each individual seed. That's why they plant 75 - > 100 seeds or so instead of just one. > > I am not an expert in radiation oncology and you shouldn't take > my views on this to be authoritative. However I personally am > not aware of any real world, practical advantage of proton beams > that justifies the extra cost. I have not seen any study that > proves that effectiveness is greater or side effects are less. > > I am aware of advantages and disadvantages of external beam vs. > brachytherapy. External beam is more appropriate if and when it > is suspected that the cancer extends to tissue around the > prostate because brachytherapy is less likely to treat that > area. However, for Gleason 6, PSA < 10 cancer, it is my > understanding that the cancer is very likely to be fully > contained in the prostate and that brachytherapy and external > beam therapies (including proton beam therapy) have about the > same (quite high) cure rates. > > Brachytherapy has the advantage over external beam that only one > procedure is needed. You go into the hospital, get it done, and > you're usually out the next day. That's it. External beam > requires about 40+ days of treatment, though it does not require > any surgical procedures as brachytherapy does. > > That's my inexpert 2 cents on the subject. > > Alan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2009 Report Share Posted July 8, 2009 Just a little clarification. Loma is approved but the other centers are under review for coverage. My understanding is that they are currently covered but that may change in the future. Laurel was a final decision made yet? Kathy From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Laurel Sent: Wednesday, July 08, 2009 12:22 PM To: ProstateCancerSupport Subject: Re: Medicare Tom, Medicare covers both protons and brachytherapy. Many men have had issues with health insurance coverage for protons, but not those on Medicare. No fights that I am aware of. Laurel > > > Watchful waiting was discussed but quickly dismissed as the > > appropriate solution. I wondered why, and of course the answer > > was that I'm relatively young. BUT, I've seen quite a few > > posters to this site who are younger than I am, and some of > > them have chosen not to be aggressive in treatment. > > Well, youth is certainly a factor. Cancers that are not > threatening for the next ten or fifteen years can become deadly > after that, and it can be easier to treat them while they are > still small. > > > Re: Lupron, I was told that it was essential to get my prostate > > down to size and ready for brachytherapy. > > That sounds reasonable too. It can be difficult to treat a > really large prostate, and Lupron will shrink it significantly. > > > ly, I haven't seen much effect. > > Lupron works by stimulating the production of a hormone that > signals the testicles to produce *more* testosterone, not less. > For a week or more, the testicles respond and the level of > testosterone in your body actually increases. Then the whole > system becomes overloaded and the testicles shut down, producing > very little testosterone. > > The effects should be kicking in about now. You will probably > soon experience the usual side effects - hot flushes, drop in > libido (which might have been elevated during the first couple of > weeks), and some reduction in energy. It will be important to > keep up a good level of exercise and to avoid over eating since > many men experience weight gain. > > > But what I regret the most was the microwave procedure, given > > to prevent urinary retention, and the catheter required > > afterwards. I've had the catheter out for five days and I'm > > still in pain and urinating every 20 minutes or so (I'm pushing > > fluids). The alternative to the microwave presented was the > > green laser, and, frankly, I'd hoped to do without either, but > > it's a bit late to worry about that. I've been taking an > > anti-inflammatory and have been taking Detrol & Flomax for > > years, so I assume I'll at least continue with the Flomax. > > That sounds pretty awful. I hope it gets better soon. I > think you should ask the doctor about the scheduling of the > brachytherapy procedure. I'm wondering if it should be > delayed until the other problem clears up so that you don't > have to deal with both at once, and so that the radiation > doesn't make an existing problem worse. > > > How would the group compare brachytherapy to proton beam? The > > latter was also dismissed as a solution during my deliberations > > with the urologist and radiological oncologist. > > The theory behind proton beam therapy is that the protons, being > massive particles, deposit most of their energy in a narrow band > of tissue (see the Wikipedia article on " Bragg Peak " for why that > is so), whereas externally beamed x-rays deliver energy to all of > the tissue in the path of the beam, including tissue in front of > and behind the prostate. Therefore, in theory, proton beam > should have about the same effectiveness as external beam x-ray > therapy but with reduced side effects on non-cancerous tissue > outside the prostate. To the best of my knowledge, no one claims > that proton beam therapy is more effective than x-ray therapy, > only that side effects are less. > > Of course in theory, theory and practice are the same. In > practice, well ... > > X-ray therapy has gotten quite refined. I have not myself seen > any evidence that the side effects from proton beam therapy are > less than those from x-rays. Furthermore, brachytherapy, if done > properly, also delivers very little energy to tissues in front of > or behind the prostate because the radiation doesn't come from > outside. It comes from inside the prostate itself, and is " cool " > enough that it typically only ionizes tissue within a couple of > millimeters of each individual seed. That's why they plant 75 - > 100 seeds or so instead of just one. > > I am not an expert in radiation oncology and you shouldn't take > my views on this to be authoritative. However I personally am > not aware of any real world, practical advantage of proton beams > that justifies the extra cost. I have not seen any study that > proves that effectiveness is greater or side effects are less. > > I am aware of advantages and disadvantages of external beam vs. > brachytherapy. External beam is more appropriate if and when it > is suspected that the cancer extends to tissue around the > prostate because brachytherapy is less likely to treat that > area. However, for Gleason 6, PSA < 10 cancer, it is my > understanding that the cancer is very likely to be fully > contained in the prostate and that brachytherapy and external > beam therapies (including proton beam therapy) have about the > same (quite high) cure rates. > > Brachytherapy has the advantage over external beam that only one > procedure is needed. You go into the hospital, get it done, and > you're usually out the next day. That's it. External beam > requires about 40+ days of treatment, though it does not require > any surgical procedures as brachytherapy does. > > That's my inexpert 2 cents on the subject. > > Alan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2009 Report Share Posted July 9, 2009 Kathy, I believe that for the forseeable future Medicare will reimburse for proton therapy, as they have done for years. Of interest is the fact that at least two of the proton facilities, Loma and UFPTI(Florida) are conducting trials whereby the patients recieve 26-29 treatments as opposed to 44-45. The dose rate is higher per treatment. If this works, it will greatly lower the cost of proton therapy. Laurel > > > > > Watchful waiting was discussed but quickly dismissed as the > > > appropriate solution. I wondered why, and of course the answer > > > was that I'm relatively young. BUT, I've seen quite a few > > > posters to this site who are younger than I am, and some of > > > them have chosen not to be aggressive in treatment. > > > > Well, youth is certainly a factor. Cancers that are not > > threatening for the next ten or fifteen years can become deadly > > after that, and it can be easier to treat them while they are > > still small. > > > > > Re: Lupron, I was told that it was essential to get my prostate > > > down to size and ready for brachytherapy. > > > > That sounds reasonable too. It can be difficult to treat a > > really large prostate, and Lupron will shrink it significantly. > > > > > ly, I haven't seen much effect. > > > > Lupron works by stimulating the production of a hormone that > > signals the testicles to produce *more* testosterone, not less. > > For a week or more, the testicles respond and the level of > > testosterone in your body actually increases. Then the whole > > system becomes overloaded and the testicles shut down, producing > > very little testosterone. > > > > The effects should be kicking in about now. You will probably > > soon experience the usual side effects - hot flushes, drop in > > libido (which might have been elevated during the first couple of > > weeks), and some reduction in energy. It will be important to > > keep up a good level of exercise and to avoid over eating since > > many men experience weight gain. > > > > > But what I regret the most was the microwave procedure, given > > > to prevent urinary retention, and the catheter required > > > afterwards. I've had the catheter out for five days and I'm > > > still in pain and urinating every 20 minutes or so (I'm pushing > > > fluids). The alternative to the microwave presented was the > > > green laser, and, frankly, I'd hoped to do without either, but > > > it's a bit late to worry about that. I've been taking an > > > anti-inflammatory and have been taking Detrol & Flomax for > > > years, so I assume I'll at least continue with the Flomax. > > > > That sounds pretty awful. I hope it gets better soon. I > > think you should ask the doctor about the scheduling of the > > brachytherapy procedure. I'm wondering if it should be > > delayed until the other problem clears up so that you don't > > have to deal with both at once, and so that the radiation > > doesn't make an existing problem worse. > > > > > How would the group compare brachytherapy to proton beam? The > > > latter was also dismissed as a solution during my deliberations > > > with the urologist and radiological oncologist. > > > > The theory behind proton beam therapy is that the protons, being > > massive particles, deposit most of their energy in a narrow band > > of tissue (see the Wikipedia article on " Bragg Peak " for why that > > is so), whereas externally beamed x-rays deliver energy to all of > > the tissue in the path of the beam, including tissue in front of > > and behind the prostate. Therefore, in theory, proton beam > > should have about the same effectiveness as external beam x-ray > > therapy but with reduced side effects on non-cancerous tissue > > outside the prostate. To the best of my knowledge, no one claims > > that proton beam therapy is more effective than x-ray therapy, > > only that side effects are less. > > > > Of course in theory, theory and practice are the same. In > > practice, well ... > > > > X-ray therapy has gotten quite refined. I have not myself seen > > any evidence that the side effects from proton beam therapy are > > less than those from x-rays. Furthermore, brachytherapy, if done > > properly, also delivers very little energy to tissues in front of > > or behind the prostate because the radiation doesn't come from > > outside. It comes from inside the prostate itself, and is " cool " > > enough that it typically only ionizes tissue within a couple of > > millimeters of each individual seed. That's why they plant 75 - > > 100 seeds or so instead of just one. > > > > I am not an expert in radiation oncology and you shouldn't take > > my views on this to be authoritative. However I personally am > > not aware of any real world, practical advantage of proton beams > > that justifies the extra cost. I have not seen any study that > > proves that effectiveness is greater or side effects are less. > > > > I am aware of advantages and disadvantages of external beam vs. > > brachytherapy. External beam is more appropriate if and when it > > is suspected that the cancer extends to tissue around the > > prostate because brachytherapy is less likely to treat that > > area. However, for Gleason 6, PSA < 10 cancer, it is my > > understanding that the cancer is very likely to be fully > > contained in the prostate and that brachytherapy and external > > beam therapies (including proton beam therapy) have about the > > same (quite high) cure rates. > > > > Brachytherapy has the advantage over external beam that only one > > procedure is needed. You go into the hospital, get it done, and > > you're usually out the next day. That's it. External beam > > requires about 40+ days of treatment, though it does not require > > any surgical procedures as brachytherapy does. > > > > That's my inexpert 2 cents on the subject. > > > > Alan > > > Quote Link to comment Share on other sites More sharing options...
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