Guest guest Posted January 2, 2007 Report Share Posted January 2, 2007 Hi all, am new to this group but have been a member of the Circle since the beginning of our journey. A mere 10 weeks (feels like a lifetime). My husband is 58 and was treated for low grade early stage bladder cancer the last 6 months of 2005. His prostate cancer is stage T1c or T2a depending on which doc we are talking to. Gleason 3+3, PSA 5. 2 cores positive out of 12. My uncle was treated at Loma this past summer, so that was our initial introduction to protons. We did hours and hours of research and contacted some of the members of BOB individually. We have decided that proton treatment is the most tissue sparing (we were especially concerned about protecting the bladder) with the potential for the least amount of side effects. Our Uro actually ruled out surgery because if the bladder cancer returns it could complicate that situation. He actually seemed to be in favor of WW, but Gregg could not go along with that. Just one point to add the to the proton thread. Is is my understanding that in the early days of LL and prostate cancer (10 years ago or so) the men were being treated with a combination of photon and proton. They still treat some patients with a combination. The proton was used as a boost. So I personally would like to think that the rate of impotence and all of the other nasty problems has got to be lower now. The science and techniques of delivery are better and they have settled on the ideal dose. In our case that will be 79.2 CBg E. Gregg and head for Southern CA this Friday. I will return home on Monday and we will see each other every couple of weeks. Now we are just waiting. I am not looking forward to a 9 week separation after all we have been through together, but my daughter says the time will pass quickly. And then we wait and see. Hard stuff any way one looks at it. Trying to enjoy the moment and not worry. Biggest waste of energy in the human experience. Laurel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2007 Report Share Posted January 2, 2007 Laurel Thanks for your story. I can understand how much you will miss your husband we in the UK tend mostly to go to the treatment centre nearest home. When I had radiation Cookridge was 40 mins away In the USA, as we know from our visits, planes are like buses are here. You think nothing of travelling 2000 miles where 200 is a big journey here. Though I can catch a train from Selby to London (about 200miles) and be there in an hour. I don't know which state you are in, but think of the distance between you as flying time. I look forward to the end of the treatment with you. Best wishes proton beam Hi all, am new to this group but have been a member of the Circle since the beginning of our journey. A mere 10 weeks (feels like a lifetime). My husband is 58 and was treated for low grade early stage bladder cancer the last 6 months of 2005. His prostate cancer is stage T1c or T2a depending on which doc we are talking to. Gleason 3+3, PSA 5. 2 cores positive out of 12. My uncle was treated at Loma this past summer, so that was our initial introduction to protons. We did hours and hours of research and contacted some of the members of BOB individually. We have decided that proton treatment is the most tissue sparing (we were especially concerned about protecting the bladder) with the potential for the least amount of side effects. Our Uro actually ruled out surgery because if the bladder cancer returns it could complicate that situation. He actually seemed to be in favor of WW, but Gregg could not go along with that. Just one point to add the to the proton thread. Is is my understanding that in the early days of LL and prostate cancer (10 years ago or so) the men were being treated with a combination of photon and proton. They still treat some patients with a combination. The proton was used as a boost. So I personally would like to think that the rate of impotence and all of the other nasty problems has got to be lower now. The science and techniques of delivery are better and they have settled on the ideal dose. In our case that will be 79.2 CBg E. Gregg and head for Southern CA this Friday. I will return home on Monday and we will see each other every couple of weeks. Now we are just waiting. I am not looking forward to a 9 week separation after all we have been through together, but my daughter says the time will pass quickly. And then we wait and see. Hard stuff any way one looks at it. Trying to enjoy the moment and not worry. Biggest waste of energy in the human experience. Laurel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2007 Report Share Posted January 2, 2007 I just completed my 14th treatment at Loma . When I did my research, most of the men I talked to told me pretty much what has been relayed here. Many of the early treatments were either a combination of proton and photon and depending on the cancer many men still must use a combination. Many of the men treated were second treatments (as they still are) One gentleman in our group had his prostate removed 9 years ago. At any rate everything is going well for me. Is Gregg actually starting treatment on Friday or Monday? I will make it a point to try to find him when he starts (its always nice to have a friend the first day). If you can stay a bit longer, new patient orientatiion is Tuesdays and Thursdays and spouses are welcome. It may help if you could attend one of these during one of your visits. You may e-mail me directly. Age 57 PSA 6.6 Gleason 3+3=6 proton beam Hi all, am new to this group but have been a member of the Circle since the beginning of our journey. A mere 10 weeks (feels like a lifetime). My husband is 58 and was treated for low grade early stage bladder cancer the last 6 months of 2005. His prostate cancer is stage T1c or T2a depending on which doc we are talking to. Gleason 3+3, PSA 5. 2 cores positive out of 12. My uncle was treated at Loma this past summer, so that was our initial introduction to protons. We did hours and hours of research and contacted some of the members of BOB individually. We have decided that proton treatment is the most tissue sparing (we were especially concerned about protecting the bladder) with the potential for the least amount of side effects. Our Uro actually ruled out surgery because if the bladder cancer returns it could complicate that situation. He actually seemed to be in favor of WW, but Gregg could not go along with that. Just one point to add the to the proton thread. Is is my understanding that in the early days of LL and prostate cancer (10 years ago or so) the men were being treated with a combination of photon and proton. They still treat some patients with a combination. The proton was used as a boost. So I personally would like to think that the rate of impotence and all of the other nasty problems has got to be lower now. The science and techniques of delivery are better and they have settled on the ideal dose. In our case that will be 79.2 CBg E. Gregg and head for Southern CA this Friday. I will return home on Monday and we will see each other every couple of weeks. Now we are just waiting. I am not looking forward to a 9 week separation after all we have been through together, but my daughter says the time will pass quickly. And then we wait and see. Hard stuff any way one looks at it. Trying to enjoy the moment and not worry. Biggest waste of energy in the human experience. Laurel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2007 Report Share Posted January 26, 2007 Hi, If the proton beam doesn't get it all, can you still dothe surgery? Joe ---- LaurelFace@... wrote: > Dear fellow members, I returned home last night from a 3 day visit with my > husband, Gregg who had his 15th beam treatment yesterday morning at Loma > medical center in Southern CA. I am seeing many newly diagnosed men on this > site, in the process of deciding on treatment. We were in that position > recently. Gregg was diagnosed Oct. 23. PSA 5.9, Gleason 3+3 and stage T1c or T2b. > He had bladder cancer less than 2 years ago, so we were especially concerned > with protecting the bladder. Early on we eliminated surgery as an option > because of the high incidence of profound side effects. The doctors we consulted > agreed that the cure rate for surgery is no better than the other treatment > options available. Our doctors knew very little about proton radiation. Loma > treats about 150 people per day with protons and 60% of these are > prostate cancer combatants. They have been using protons since the very early 90s. > > Gregg and I attended the weekly Brotherhood of the Balloon meeting. There > were at least 70 patients in attendance. Men of all descriptions, and walks of > life. The youngest was a 42 year old from New York. We saw license plates > from all over the country. The facilitator asked for a show of hands from any > one who had been referred by their doctor. Not a single hand went up. Your > doctors are not going to present this to you as an option. It is not new, > experimental or investigational. Part of Loma 's mission statement is To Make > Man Whole. Loma is sadly treating many men with salvage treatment for > failed surgeries. > > Counting Gregg, there were four men who are Kaiser patients who are paying > out of pocket. Most insurance companies will cover proton beam radiation > including Medicare and AARP. This is an amazing facility. We have spoken to many > men, via the Internet whose treatment was years ago and are experiencing zero > side effects. They do report minimal ejaculate, but that is all. One man I > know had slight rectal bleeding which cleared up on its own. All we have spoken > to retain full potency and have no incontinence. I urge anyone going through > the decision process to at least investigate this option as well as others. > A good place to start is at _www.protonbob.com_ (http://www.protonbob.com) . I > would be happy to answer any questions. I know what a heartbreaking decision > this is. I began to feel some hope when I spoke to my 68 year old uncle who > was treated at Loma the summer of 2006. Loma does all of the > other treatments as well, just so you know. They don't do straight photon > radiation, but men with more advanced cancer receive a combination of photon and > proton. They also do surgery including Da Vinci. My heart is with all of you > every day. > > Laurel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2007 Report Share Posted January 29, 2007 Hi Joe, Proton Beam therapy is local therapy. If proton beam does not get it all, then the PCa is probably outside the prostate. Surgery is also for local therapy. So why would you want to depend on local therapy again? If it were me, I might try Androgen Deprivation Therapy if I had a recurrence. I wish you all the bestAubrey Pilgrim, DC (Ret.) Author ofA Revolutionary Approach to Prostate Cancer-Read the original book for FREE at: http://www.prostatepointers.org/prostate/lay/apilgrim/Read new edition for FREE at http://www.cancer.prostate-help.org/capilgr.htmDr. E. Crawford is co-author of the revision Hi, If the proton beam doesn't get it all, can you still dothe surgery? Joe---- LaurelFaceaol wrote: > Dear fellow members, I returned home last night from a 3 day visit with my > husband, Gregg who had his 15th beam treatment yesterday morning at Loma > medical center in Southern CA. I am seeing many newly diagnosed men on this > site, in the process of deciding on treatment. We were in that position > recently. Gregg was diagnosed Oct. 23. PSA 5.9, Gleason 3+3 and stage T1c or T2b. > He had bladder cancer less than 2 years ago, so we were especially concerned > with protecting the bladder. Early on we eliminated surgery as an option > because of the high incidence of profound side effects. The doctors we consulted > agreed that the cure rate for surgery is no better than the other treatment > options available. Our doctors knew very little about proton radiation. Loma > treats about 150 people per day with protons and 60% of these are > prostate cancer combatants. They have been using protons since the very early 90s. > > Gregg and I attended the weekly Brotherhood of the Balloon meeting. There > were at least 70 patients in attendance. Men of all descriptions, and walks of > life. The youngest was a 42 year old from New York. We saw license plates > from all over the country. The facilitator asked for a show of hands from any > one who had been referred by their doctor. Not a single hand went up. Your > doctors are not going to present this to you as an option. It is not new, > experimental or investigational. Part of Loma 's mission statement is To Make > Man Whole. Loma is sadly treating many men with salvage treatment for > failed surgeries. > > Counting Gregg, there were four men who are Kaiser patients who are paying > out of pocket. Most insurance companies will cover proton beam radiation > including Medicare and AARP. This is an amazing facility. We have spoken to many > men, via the Internet whose treatment was years ago and are experiencing zero > side effects. They do report minimal ejaculate, but that is all. One man I > know had slight rectal bleeding which cleared up on its own. All we have spoken > to retain full potency and have no incontinence. I urge anyone going through > the decision process to at least investigate this option as well as others. > A good place to start is at _www.protonbob.com_ (http://www.protonbob.com) . I > would be happy to answer any questions. I know what a heartbreaking decision > this is. I began to feel some hope when I spoke to my 68 year old uncle who > was treated at Loma the summer of 2006. Loma does all of the > other treatments as well, just so you know. They don't do straight photon > radiation, but men with more advanced cancer receive a combination of photon and > proton. They also do surgery including Da Vinci. My heart is with all of you > every day. > > Laurel Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.