New here - WOO-HOO. Need some insight

somemomojo
somemomojo Member Posts: 21
Hi all - I'm a 55 yr old man who was just diagnosed last Friday. My last PSA was 6 & my Gleason is 7 (3+4) w/one core out of 8 exhibiting cancer "a small amount" as the surgeon said. My father was disgnosed at age 57 - he had ignored symptoms until he could not urinate at all and had a walnut sized tumor at the time of the diagnosis. He had a radical in which they found it had matasticized to the neck of the bladder. He lived 7 years - 2 of which were miserable with a poor quality of life. I essentially closed my business for the last 2 months of his life to care for him - the cancer had spread all over. I saw all this first hand and am pretty nervous for my health.

I asked the surgeon who did the biopsy what she believed my chances were to be cancer free long term if I do treatment - she said near 100%. I have VA insurance and nearly all options are offered, however, with my family history I am leaning toward a robotic RP. Other than dying...my main concerns involve possibility of lifetime incontenance and erectile disfunction. God was good to me in that ED has not yet been an issue. My father never regained contenence of urine or his ability to have an erection. Biopsy Surgeon said I really need to to try to divorce myself from the experience of my father's illness because mine is in no way as severe. It sounds logical - but after experiencing the progression of his disease logic screams to be supported by personal experiences of survivors. So... would any of you who were or are in circumstances similar to mine tell me your stories? As well anyone who wants to post things you think I should know - PLEASE DO! I'm scheduled to talk with an oncologist and radiologist next Wednesday. Although my Doc said I have time to make a decision - I think mine is made. I always believed there was a moment in my father's disease whare there was just one cancer cell toomany to be overcome. Thanks for you help and for welcoming me into your community. I need your help - I have 2 beautiful teenaged daughters who I can't tell until I know the scoop. Thanks again... Kurt
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Comments

  • laserlight
    laserlight Member Posts: 165
    Welcome
    It is understandable to have concerns. This cancer is bad news. Now take some time and go thur the rest of the posts here in the PC group. There is some very good information contained here. Research all the treatment options, I was diagnosed at age 61 my psa was only 2.25, but my gleason score was the bad 7. I had 18 biopsy samples taken and all showed between 40 to 60 percent cancer cells. Talk to the other doctors and get advice, but donot let this go. I had the robotic surgery in Feb of 2011. I felt that this was the best treatment method for my cancer. Now there are other treatment methods that work as well. Your life has changed and from this point forward you will have to make adjustments. This past year has been intense for me. Take another person with you to the doctors visit's. My wife has been a great help in this area, she keeps the information straight and correct. You have to focus on your cancer and do what is best for you. I had a very agressive form of PC. So I opted for an agressive treatment. You cannot compare your cancer with another persons. My wife cared for her sister when she was dying from breast cancer. At the doctor visit she looked me in the eye and said "get it taken care of". At this point in time you are going thru a lot of confusion and have a lot of questions, This forumn here is a good place for information and members are very willing to share their journeys. Take care and keep us posted
  • fcarpen
    fcarpen Member Posts: 4 Member
    I Recently Went Through A Similar Diagnosis
    Kurt,

    Good news. Today's cancer treatments are not your father's cancer treatments. Treatments and outcomes are continually improving. It sounds like you caught yours early which makes all of the difference in the world. Listen to your doctor and embrace the odds for survival. While it is hard to deal with, keep a positive outlook on life.


    During my annual physical in February at the age of 54, my doctor noticed that my PSA had jumped from 2.4 to 3.6. She sent me to a local urologist who performed the biopsy. It came back with 8 out of 10 positives and a gleason score of 6(3+3).

    With my urologist and GP's assistance, I decided that the robotic surgery was my best option. Once that was determined, I decided that the most important variable I could control over my outcome was the skills of the Surgeon. I began researching surgeons around the country to find the one I felt was the best fit for me. However during a follow-up visit with my regular doctor, she convinced me that the local urologist she had sent me to was as good as anyone out there. I trust her completely and I decided to go ahead with RALP surgery here in town. I valued the prospect of recovering in the comfort of my own home and being able to go back to work quickly after surgery. I did talk to the urologist regarding his experience on the Davinci machine. He has performed more than 200 procedures on the Da Vinci and more than 300 open procedures. My research indicated that a surgeon requires 100 to 200 procedures on the DaVinci to be completely through the learning curve. While I know there are other surgeons available with many more procedures on the DaVinci, I was comfortable with the local surgeon and went into the hospital with no doubts about my decision.

    My surgery was April 30th. The pathology report came back that the cancer was completely encased inside the prostate and the surgical margins were negative. My follow up PSA shows that it has dropped from the pre-surgery level of 3.6 to 0.03.

    Fortunately I have done extremely well following the surgery. I have not needed to wear any type of diapers or pads since the catheter was removed. I also had my first erection the night the catheter was removed. While it was painful, the pain has now gone away as I continue to heal from the surgery. I feel extremely blessed to be doing so well! While my recovery may not be the norm, I feel I moved the odds in my favor by researching the surgeon skills up front.

    My advice, take some time to evaluate your options. Talk to the doctors. Ask them about your options. Talk to friends and co-workers. When I brought up my situation with friends in our local cycling club, I found five other men who had dealt with prostate cancer and were doing fine. Their support was invaluable in my decision-making process. Do research but at the same time be aware of where the data is coming from. I found that many doctors were rated very capable on their own web sites. While that may be true, just be aware that the information could be biased in their favor. There are many "local" surgeons around the country who quietly take excellent care of their patients. They don't show up on websites, but are well known in the local medical community. Bottom line, you need to be comfortable with any decision you ultimately make. When they roll you into surgery, you don't want to be wondering if you made the right decision.

    Finally good luck. My prayers and thoughts are with you as you go through this process. Keep us posted.
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    Dear Kurt,
    I am sorry that you have joined our club. You have come to a good place for information.

    Diagnostic tests:

    It is very important for you to have a seoond opinion on the pathology from your biopsy so that you are not over or under treated. Doing the gleason is subjective so you want a world class pathoogist to do this test. There are only about 10 in the United States. One is Francisco Civantos of Florida (305) 325-5587.

    Another test is an MRI with a spectroscopy. This will indicate if there is extracapsular extention, and is important for determining a treatment type.


    Attitute and resources

    Excellent idea to attend a local support group(s). Where are you located, some of us may be able to guide you.

    Research, research and research, books, internet , articles, etc. ...You have some time to make a decision, so you want to make the one that is best for you.

    Attitude....we all go thru shock and all the negative feeling the first few months....be postive, be with upbeat people....enjoy the moments.

    we at this site are here for you
  • The Nev
    The Nev Member Posts: 50
    The good the bad and the ugly
    I am somewhat reluctant to go through this again but I think having this information may help you or at least give you some of the negative that goes with the positives you hear. I have been criticized on here before for simply telling the truth.

    I was diagnosed at age 54 Gleason of 3+4=7 after going through all the information I could find I elected to have robotic surgery. I went to M.D. Anderson and my Dr was very experienced with the DaVinci robot. I always hear the Dr is the most important part. While I don’t doubt that, it’s no guarantee that things will go as well as expected. What I heard my Dr say was the odds are you will regain continence and there’s a good chance you’ll regain erections. What happened is I didn’t I still have to wear pads almost 3 years post surgery and still have E.D. I use Trimix injections to get an erection. Sex is nothing like before and neither is my overall quality of life. However I am still cancer free that was the goal when I started and for that I am grateful. If I had it to do all over I would not have surgery, it wasn’t worth it for me. You may have entirely different results many men do. Then again you may end up where I’m at, of course that may be worth it to you. I just want you to know that not all stories here have the best endings. I wish you the best in what ever your decision is
  • Kongo
    Kongo Member Posts: 1,166 Member
    Decisions, Decisions
    Kurt,

    Welcome to the forum but I wish you weren't here. As you can see from the responses just in your new thread there are plenty of opinions about what is the prudent course to take with a diagnosis such as yours.

    I am pretty much anti-surgery for almost any situation based on the potential adverse impact on quality of life. But this is a deeply personal decision and I have close friends who have had surgery and have no regrets and I have also corresponded with several men who had surgery with horrible consequences for continence and sexual function. To me, quality of life was always more important than quantity but the statistics show that there is not much difference in long term mortality between surgery and radiation but there is a pretty broad difference side effects.

    Although robotic surgery has been increasing in use since it was introduced for prostate cancer in 2005 there is a wide range of experience in the doctors using it. If you do choose surgical removal I hope you find a doctor who has considerable (more than 300 or so) experience. I can't recall any studies which show that robotic surgery has better continence and sexual function results than open surgery but there may be some and I'm sure one of the surgery fans in this forum will point them out.

    Keep in mind that most GPs know little about prostate cancer. Some are better than others, of course, but although I think I have a great GP I believe I know more about prostate cancer today than he does. It's not his specialty and I know he doesn't have the time to spend as much time researching it as I do. All urologists are also surgeons and there are studies that show that 90% of these will urge you to get surgery. If you only consult with your urologist and GP you're missing a big perspective. I hope you take the time to consult with specialists in the latest forms of IMRT, SBRT, and proton radiation to get their perspective as well. Of course, radiologists are going to overwhelmingly suggest that surgery is barbaric and that you should have radiation. I would also seek out an oncologist who specializes in prostate cancer to get a more balanced perspective but most of them are also surgeons too.

    My diagnosis in March of 2010 with a 4.3 PSA, 3+3=6 Gleason score, a single positive core, normal DRE, and no history of prostate cancer eventually led me to select CyberKnife radiation (a from of SBRT) and I have had no side effects at all or impact on continence or sexual potency or function. I'm certainly not suggesting that you would have similar results but you need to do your own investigations and evaluate the potential risk.

    Everyone who has been diagnosed with prostate cancer will have an opinion, including the experts and specialists. Plus family and friends who don't even have a clear grasp of where the prostate is located or what its purpose is will also give you opinions. At the end of the day you have to take it all under consideration and make the choice that is best for you and be prepared to live with the results. You won't be able to go back and do it again.

    I urge you to do as much research as you can, consult with several specialists, precisely define what your quality of life expectations are after treatment, and go forward with confidence.

    Best of luck to you.

    K
  • hunter49
    hunter49 Member Posts: 240 Member
    Welcome to the party that
    Welcome to the party that nobody wants to attend. You have G 7 which appears to be the good one. However, I would urge you to get a second opinion on your slides from either Sloan or Hopkins. The grading is subjective and can change. It can also change after surgery as well. Mine did from the good to the bad 7. They only did 8 cores which is not a lot to make any decision about how much cancer you may or may not have. Was your DRE normal? Even at a 3+4 you have an intermediate level of agressive cancer but the odds are you are still organ confined. Most of the horror stories I hear about form surgery are from VA hospitals or doctors who do not have enough experieince and teaching hospitals. Get a doctor with as close to a 1000 of these operations as possible. I had a an RP in November at 49 and no issues with incontinence and ED is coming along well with no drugs just a sexxy wife. It is good you have no ED issues prior to surgery as it will not make it better. I chose surgery because I wanted it out and wanted to know what I had. All margins, lymph, bladder neck and SV were clean but was upgraded and found it in the other lobe. First 2 PSA non detectable. Knowing any rise in PSA will indicate reoccurence is another benefit of surgery. Good luck and you will do fine. BTW, where are you from?
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member
    What's There To Discuss?
    If you've already decided on surgery, what is there to discuss?

    I'm with Kongo in being an opponent of surgery as a treatment for early stage prostate cancer (PCa), which is what you have. If you are actually open to considering other forms of treatment, I also recommend CyberKnife (CK) which is what both Kongo and I were treated with and both of us are in remission without any side effects whatsoever and without any catheters or required recovery time.

    CK is the MOST precise method of external beam radiation treatment currently available; the computer program which controls the administration of radiation adjusts for both body and organ movement during treatment which is delivered at the SUB-mm level (which is far beyond what can be done w/a knife). Only 4-5 outpatient treatments are required. Reported side effects are minimal -- virtually no ED or incontinence issues -- and effectiveness in terms or mortality is equal to that achieved w/surgery and other treatment methods.

    If you want to know more about why surgery is NOT necessarily the best form of treatment for early stage PCa, I suggest you read the following articles which details the "good bad and ugly" of surgery for PCa:

    http://www.hifurx.com/prostate-cancer/prostate-cancer-after-effects/

    If you want to learn more about CK, I suggest you view the following video which is presented by Dr. Fuller, a practicing CK physician/radiologist in San Diego:

    http://link.brightcove.com/services/player/bcpid1311218266001?bckey=AQ~~,AAABMTO41yk~,0BDF4jnPRYk18rLHqrcfnGVhJxC-Y8Rm&bctid=1349680876001

    If you have any specific questions about CK, feel free to post them here or on Accuray's patient forum (Accuray is the manufacturer of CK), which is frequented by doctors and lay people, here:

    http://cyberknife.com/forum.aspx?g=topics&f=2586

    And, if you want some info regarding the efficacy of CK as a treatment method, view the following links which summarize the results of a 5 year study published on the use of CK;

    http://www.ro-journal.com/content/6/1/3

    http://www.coloradocyberknife.com/first-five-year-outcomes-published-on-cyberknife-radiosurgery-for-prostate-cancer/

    Here's also a link to a paper summarizing the results of most of the studies to date on the effectiveness of CK:

    http://www.tcrt.org///mc_images/category/4309/04-katz_tcrt_9_5.pdf

    Good luck!
  • laserlight
    laserlight Member Posts: 165
    hunter49 said:

    Welcome to the party that
    Welcome to the party that nobody wants to attend. You have G 7 which appears to be the good one. However, I would urge you to get a second opinion on your slides from either Sloan or Hopkins. The grading is subjective and can change. It can also change after surgery as well. Mine did from the good to the bad 7. They only did 8 cores which is not a lot to make any decision about how much cancer you may or may not have. Was your DRE normal? Even at a 3+4 you have an intermediate level of agressive cancer but the odds are you are still organ confined. Most of the horror stories I hear about form surgery are from VA hospitals or doctors who do not have enough experieince and teaching hospitals. Get a doctor with as close to a 1000 of these operations as possible. I had a an RP in November at 49 and no issues with incontinence and ED is coming along well with no drugs just a sexxy wife. It is good you have no ED issues prior to surgery as it will not make it better. I chose surgery because I wanted it out and wanted to know what I had. All margins, lymph, bladder neck and SV were clean but was upgraded and found it in the other lobe. First 2 PSA non detectable. Knowing any rise in PSA will indicate reoccurence is another benefit of surgery. Good luck and you will do fine. BTW, where are you from?

    WOW
    Lots of good input here. This is good. A second opinion is a good way to go. Research all of the treatment options. This is going to be one of the most important steps of your life.
    Look at all of the data so far. Question all of the treatment options and ask about the side effects. For myself I was focused on getting the cancer taken care of, my doctor explained all of the treatment options and the side effects. I have a very good doctor and he has over 200 procedures with the robotic surgery. On your posting it was indicated about one cancer cell to many. Any cancer cell is to many. With mine I was on the edge of this spreading and had to take a agressive approach to treatment. Now the quality of life issues, We for the most part are in our 50's 60's 70's 80's. I know that I am not able to perform like I was in my 20's, this is a memory. We have all have started down a new road in out lifes. For the most part we are now concerned about living a longer life. Donot let this go, this cancer does not go away. I am sure that your family would want you to get proper treatment. Everybody here wants to see you beat this monster. Hang in there and come back to this forum. You for the most part are in a fight for your life.
  • djs123
    djs123 Member Posts: 102
    Woo-hoo- guidance
    Hi Kurt

    I'm so sorry to hear about your diagnosis and in light of your father's experience your panic is certainly understandable. However, as someone else pointed out, fortunately there have been many advances in the treatment for prostate cancer since your father's unfortunate experience, so it's important you stay positive and hopeful.

    My husband was diagnosed with a gleason score of 9 in January. I spent many months researching treatments, reading books etc. and have accumulated a wealth of information. Knowledge here is crucial in making your decision regarding treatment.

    I don't know if you're familiar with proton therapy, but that might be something you want to look into it. With a gleason score of 7 you are probably a good candidate for it. Here is a link to their website http://www.protons.com/
    There are about 6 facilities in the US that do this procedure (it's a form of radiation therapy that in theory directs a more focused beam to to the area to be treated thereby causing less damage to other areas). Please understand this is a layman's explanation, so contact the facility for a clearer explanation of what they do. Most people we've communicated with have done their treatment at Loma Linda in California, we were exploring the facility in Jacksonville, Fl. They are very helpful, will spend lots of time on the phone with you explaining everything. The downside is that you have to live near the facility you'll be treated at since it's a daily treatment, the upside is they have meetings and support groups which I'm sure are useful.

    We sent my husband's lab work to John's Hopkins for a second opinion, I then called John Hopkins and had the results explained to me. Btw, I recordered every single phone conversation and doctors visit on my iphone and then we carefully listened to it again after the appointment. It's amazing how much you don't remember during these visits. Even if there are two of you, somehow info can get muddled. Another thing I would recommend is to get a three ring binder and every bit of information you collect should be put into this binder, including lab reports, doctors visits, notes, etc.

    Anyway, back to proton therapy.....they asked for the lab reports had a doctor examine them and then we were contacted and had a consultation on the phone. We opted to have his treatment done locally IMRT for a variety of reasons, mainly the high gleason. He had 40 weeks of IMRT and hormone therapy. Just finished his IMRT May 14. Had no major side effects, is just getting hot flashes and weary from the hormone therapy. Should know in a few months how well the therapy worked. Fingers and toes crossed, many prayers daily.

    Here is a list of books that are useful. There are many books out there but these seem to have the most recent data and info. (Also the proton facility will send you a free package which includes a book by Robert J. Marckini "You can beat prostate cancer" for you to review while weighing all your options.

    Winning the Battle against Prostate Cancer by Gerald Chodak, MD
    Natural Strategies for cancer patients by Russell Blaylock, MD

    Noteworthy, my husband says the Gerald Chodak book has the most useful information. He does not believe in vitamins or herbs so the other book is of no interest to him, but I think it's useful.

    Btw, the doc said it's important to follow a heart healthy diet. Apparently, protein from red meat feeds prostate cancer, don't have to cut it out but limit intake..

    Glad you joined this site, there are some amazing people on it with wonderful information to share. This site has been a treasure trove of information and a source of hopefulness for us.

    Good luck, I wish you the best. Stay positive & strong for your girls.
    djs
  • somemomojo
    somemomojo Member Posts: 21
    djs123 said:

    Woo-hoo- guidance
    Hi Kurt

    I'm so sorry to hear about your diagnosis and in light of your father's experience your panic is certainly understandable. However, as someone else pointed out, fortunately there have been many advances in the treatment for prostate cancer since your father's unfortunate experience, so it's important you stay positive and hopeful.

    My husband was diagnosed with a gleason score of 9 in January. I spent many months researching treatments, reading books etc. and have accumulated a wealth of information. Knowledge here is crucial in making your decision regarding treatment.

    I don't know if you're familiar with proton therapy, but that might be something you want to look into it. With a gleason score of 7 you are probably a good candidate for it. Here is a link to their website http://www.protons.com/
    There are about 6 facilities in the US that do this procedure (it's a form of radiation therapy that in theory directs a more focused beam to to the area to be treated thereby causing less damage to other areas). Please understand this is a layman's explanation, so contact the facility for a clearer explanation of what they do. Most people we've communicated with have done their treatment at Loma Linda in California, we were exploring the facility in Jacksonville, Fl. They are very helpful, will spend lots of time on the phone with you explaining everything. The downside is that you have to live near the facility you'll be treated at since it's a daily treatment, the upside is they have meetings and support groups which I'm sure are useful.

    We sent my husband's lab work to John's Hopkins for a second opinion, I then called John Hopkins and had the results explained to me. Btw, I recordered every single phone conversation and doctors visit on my iphone and then we carefully listened to it again after the appointment. It's amazing how much you don't remember during these visits. Even if there are two of you, somehow info can get muddled. Another thing I would recommend is to get a three ring binder and every bit of information you collect should be put into this binder, including lab reports, doctors visits, notes, etc.

    Anyway, back to proton therapy.....they asked for the lab reports had a doctor examine them and then we were contacted and had a consultation on the phone. We opted to have his treatment done locally IMRT for a variety of reasons, mainly the high gleason. He had 40 weeks of IMRT and hormone therapy. Just finished his IMRT May 14. Had no major side effects, is just getting hot flashes and weary from the hormone therapy. Should know in a few months how well the therapy worked. Fingers and toes crossed, many prayers daily.

    Here is a list of books that are useful. There are many books out there but these seem to have the most recent data and info. (Also the proton facility will send you a free package which includes a book by Robert J. Marckini "You can beat prostate cancer" for you to review while weighing all your options.

    Winning the Battle against Prostate Cancer by Gerald Chodak, MD
    Natural Strategies for cancer patients by Russell Blaylock, MD

    Noteworthy, my husband says the Gerald Chodak book has the most useful information. He does not believe in vitamins or herbs so the other book is of no interest to him, but I think it's useful.

    Btw, the doc said it's important to follow a heart healthy diet. Apparently, protein from red meat feeds prostate cancer, don't have to cut it out but limit intake..

    Glad you joined this site, there are some amazing people on it with wonderful information to share. This site has been a treasure trove of information and a source of hopefulness for us.

    Good luck, I wish you the best. Stay positive & strong for your girls.
    djs

    Many thanks...
    to all of you who responded to my post. Although I have said I am leaning toward robotic RP I am willing to consider other options. I have one big problem, resources. I have VA insurance only and a divorce after a 20 year marriage that left me as poor as I was in college.

    The VA can offer me all treatments with the exception of protien beam therepy, some type of cryogenic proceedure and cemotherapy (last option may not be available for anyone - was in shock at the appointment so that info didn't stick). I have 2 beautiful teanaged daughters as I have said - one who will be starting college next year (wants to be a Doctor - has everything it take to do it!) I am a devoted payer of child support and give my kids all the extra I can. I can't afford a second opinion - I know that sounds nuts - I should be able to do without something to pay for it - it is, after all, my life, but in the last 10 years I have parred my expenses to the bone...nothing extra. So...I have to take the best chioice I have available.

    The reason I am leaning toward surgery is personal. As I also said, I cared for my father full ime for the last two months of his life and gave him various levels of care for 3 years before that. I saw what this disease can do when I has established a hold. I want the best chance I can get in never coming closae to a point where there is just one cancer cell to many to be beaten. My reasoning says - if the prostrate is gone - provided the cancer was encapsulated - then that's it. I say this as one who has no experience with this and it may be a misconception on my part as I have read online of cancer reocurring at the site the prostrate was removed from. I don't know...world is still spinning for me. I am single and have no close family so I am in this on my own - that is fine with most of the problems life may bring, but this isn't most problems.

    I am optimistic - I am, and have been, a fighter all my life. Whatever this disease does to me it isn't going to have an easy job doing it. The complicatiopns associated with surgery suck - I saw my Dad remain incontent - saw his embarrassment when his catheter tube cam loose in a restaurant. I listend to him as he faced the fact of never again being unable to achieve an erection at 57. I don't want any of this but I do want to live to walk my daughters down the isle.

    Gotta get back to work lots more to say again thank you all.

    Kurt
  • somemomojo
    somemomojo Member Posts: 21
    hunter49 said:

    Welcome to the party that
    Welcome to the party that nobody wants to attend. You have G 7 which appears to be the good one. However, I would urge you to get a second opinion on your slides from either Sloan or Hopkins. The grading is subjective and can change. It can also change after surgery as well. Mine did from the good to the bad 7. They only did 8 cores which is not a lot to make any decision about how much cancer you may or may not have. Was your DRE normal? Even at a 3+4 you have an intermediate level of agressive cancer but the odds are you are still organ confined. Most of the horror stories I hear about form surgery are from VA hospitals or doctors who do not have enough experieince and teaching hospitals. Get a doctor with as close to a 1000 of these operations as possible. I had a an RP in November at 49 and no issues with incontinence and ED is coming along well with no drugs just a sexxy wife. It is good you have no ED issues prior to surgery as it will not make it better. I chose surgery because I wanted it out and wanted to know what I had. All margins, lymph, bladder neck and SV were clean but was upgraded and found it in the other lobe. First 2 PSA non detectable. Knowing any rise in PSA will indicate reoccurence is another benefit of surgery. Good luck and you will do fine. BTW, where are you from?

    Hi Hunter...
    thanks for the post - I am from Fredonia NY - Near Buffalo - use the Buffalo VA Hospital. They do their Robotic Surgeries at The Roswell Cancer Center In Buffalo as they have an agreement to ues Roswell's equipment.

    Kurt
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member

    Hi Hunter...
    thanks for the post - I am from Fredonia NY - Near Buffalo - use the Buffalo VA Hospital. They do their Robotic Surgeries at The Roswell Cancer Center In Buffalo as they have an agreement to ues Roswell's equipment.

    Kurt

    local support group via US TOO organization
    Buffalo Us TOO Buffalo Metro Chapter
    VA Med Ctr - Third Floor room 301 3495 Bailey Ave,
    1st Tues 7-9 pm Bill Krellner [email protected] 716-836-4761


    Also see if there are any free clinical trials at Roswell, check the site.
  • broganspond
    broganspond Member Posts: 7
    family history, hope for the future
    I had lung cancer 8 years ago and found this sight to be very helpfull during my recovery. So when I found out my husband had prostate cancer I turned again to this site to learn from others what he might expect. My husbands father was diagnosed with prostate cancer 9 years ago and is in end stage at this time because he choose to do nothing. It has metastsized numerous locations and he is very miserable right now. My husband started having symptoms, abnormal exams and psa changes about a year ago. Following a biopsy that led to a gleason score of 6, he chose a radical prostectomy and lymph node disection which was performed today. We went to visit his father a couple of weeks ago and following that visit it confirmed our opinions that this was the right thing to do. His father told him that he wished he had done what my husband is doing. If he had to do it over again he would of had the surgery. So if your father were here maybe he'd tell you the same. My husband came to the conclusion that he didn't want to sit and wait for it to spread and become untreatable if he had an option. He is only 56, we have 4 kids and 4 grandkids and he doesn't want to miss a thing if he has a choice. His father was 66 when symptoms started. My husbands doctor suggested that we don't even wait more than 2 to 3 months in order to assure that it wouldn't spread. There are no guarantees in life but when you can take control maybe you can change an outcome. Your story touched me because of the father son relationship. If you'd like I can keep you posted on my husbands progress. He's not a computer person but he might get on if he feels the need to find more answers.
  • tonybuxton
    tonybuxton Member Posts: 88
    trearment choice
    Hi Kurt
    I thought that robot surgery would be the best for me. But my oncologist said no. Too many side effects. So I had what is called the latest Novalis shaped beam IMRT. I had 30 treatments of high powered radiation and did not have a single side effect and I am 81! I asked about Proton radiation and he advised me that it was no better than the IMRT. However the advantage of RP is that the surgeon gets a good look at everything and sees how far the cancer has spread and plan further treatment if necessary. In my case I had TURP during which they removed enough of my prostate to make a good diagnosis.
    I did get a second opinion and both advised radiation. My PSA went from 42 before to <0.1
    afterwards but I did have 3 months hormone therapy. I have my next PSA in 3 weeks time and am hoping for the best. Good luck to you
    Tony
  • somemomojo
    somemomojo Member Posts: 21

    trearment choice
    Hi Kurt
    I thought that robot surgery would be the best for me. But my oncologist said no. Too many side effects. So I had what is called the latest Novalis shaped beam IMRT. I had 30 treatments of high powered radiation and did not have a single side effect and I am 81! I asked about Proton radiation and he advised me that it was no better than the IMRT. However the advantage of RP is that the surgeon gets a good look at everything and sees how far the cancer has spread and plan further treatment if necessary. In my case I had TURP during which they removed enough of my prostate to make a good diagnosis.
    I did get a second opinion and both advised radiation. My PSA went from 42 before to <0.1
    afterwards but I did have 3 months hormone therapy. I have my next PSA in 3 weeks time and am hoping for the best. Good luck to you
    Tony</p>

    Thanks...
    Tony,

    Thank you so much for your reply. The support on here has been great. Glad to hear your treatment went well and that you continue to enjoy excellent health. My best to you...:)

    Kurt
  • somemomojo
    somemomojo Member Posts: 21

    family history, hope for the future
    I had lung cancer 8 years ago and found this sight to be very helpfull during my recovery. So when I found out my husband had prostate cancer I turned again to this site to learn from others what he might expect. My husbands father was diagnosed with prostate cancer 9 years ago and is in end stage at this time because he choose to do nothing. It has metastsized numerous locations and he is very miserable right now. My husband started having symptoms, abnormal exams and psa changes about a year ago. Following a biopsy that led to a gleason score of 6, he chose a radical prostectomy and lymph node disection which was performed today. We went to visit his father a couple of weeks ago and following that visit it confirmed our opinions that this was the right thing to do. His father told him that he wished he had done what my husband is doing. If he had to do it over again he would of had the surgery. So if your father were here maybe he'd tell you the same. My husband came to the conclusion that he didn't want to sit and wait for it to spread and become untreatable if he had an option. He is only 56, we have 4 kids and 4 grandkids and he doesn't want to miss a thing if he has a choice. His father was 66 when symptoms started. My husbands doctor suggested that we don't even wait more than 2 to 3 months in order to assure that it wouldn't spread. There are no guarantees in life but when you can take control maybe you can change an outcome. Your story touched me because of the father son relationship. If you'd like I can keep you posted on my husbands progress. He's not a computer person but he might get on if he feels the need to find more answers.

    Thanks
    Dear Broganspond,

    Thank you so much for your responce - your story touched me as well. I saw what your father-in-law is going through when my Dad passed. Although a lot of people think I am making a drastic step with my cancer in such an early stage - but as you shared, your husband does not want to experience the same outcome as his Dad. I too am 56 and have 2 wonderful daughters who are 17 and nearly 16 (was an older 1st time dad). I want to be there for them as long as they need me - and if I have to fight to do it I will. Your note inspired me to stay the course and be brave. I would enjoy knowing how your husband does on his journey - if you'd like to share I will read...:).

    God's veruy best blessings to you and your family - I'm rooting for you all!

    Kurt
  • somemomojo
    somemomojo Member Posts: 21

    family history, hope for the future
    I had lung cancer 8 years ago and found this sight to be very helpfull during my recovery. So when I found out my husband had prostate cancer I turned again to this site to learn from others what he might expect. My husbands father was diagnosed with prostate cancer 9 years ago and is in end stage at this time because he choose to do nothing. It has metastsized numerous locations and he is very miserable right now. My husband started having symptoms, abnormal exams and psa changes about a year ago. Following a biopsy that led to a gleason score of 6, he chose a radical prostectomy and lymph node disection which was performed today. We went to visit his father a couple of weeks ago and following that visit it confirmed our opinions that this was the right thing to do. His father told him that he wished he had done what my husband is doing. If he had to do it over again he would of had the surgery. So if your father were here maybe he'd tell you the same. My husband came to the conclusion that he didn't want to sit and wait for it to spread and become untreatable if he had an option. He is only 56, we have 4 kids and 4 grandkids and he doesn't want to miss a thing if he has a choice. His father was 66 when symptoms started. My husbands doctor suggested that we don't even wait more than 2 to 3 months in order to assure that it wouldn't spread. There are no guarantees in life but when you can take control maybe you can change an outcome. Your story touched me because of the father son relationship. If you'd like I can keep you posted on my husbands progress. He's not a computer person but he might get on if he feels the need to find more answers.

    Thanks
    Dear Broganspond,

    Thank you so much for your responce - your story touched me as well. I saw what your father-in-law is going through when my Dad passed. Although a lot of people think I am making a drastic step with my cancer in such an early stage - but as you shared, your husband does not want to experience the same outcome as his Dad. I too am 56 and have 2 wonderful daughters who are 17 and nearly 16 (was an older 1st time dad). I want to be there for them as long as they need me - and if I have to fight to do it I will. Your note inspired me to stay the course and be brave. I would enjoy knowing how your husband does on his journey - if you'd like to share I will read...:).

    God's veruy best blessings to you and your family - I'm rooting for you all!

    Kurt
  • shipjim
    shipjim Member Posts: 137 Member

    Thanks...
    Tony,

    Thank you so much for your reply. The support on here has been great. Glad to hear your treatment went well and that you continue to enjoy excellent health. My best to you...:)

    Kurt

    I was 58, my father was 58,
    I was 58, my father was 58, I too watched. There was no early detection then so it was advanced when they got in there. He didn't suffer in death, he took what ever radiation and what ever else he could then and died of a heart attack 5 yrs later.
    I'm now 65 I went with the robotic just to "get it out".
    I have minor incontinence,like I wear a mini pad when I golf, lift or stuff like that, I am impotent although I can achieve orgasim with a mini softi!!! I was not diligent with the after treatment of viagra et al and didn't use the recommended pump so some of that may be my fault.
    Having said all this at the time I was diagnosed 3 of 12 cores I don't believe the gamma knife may have been available The robot was about 3 yrs old and Gama knife wasn't available.
    I have no real regrets, I live a very full life with lots of grandkids, flyfishing, jeeping,golfing and anything else I wish to do.
    I wish you good luck and once you decide get on with life.
    My only comment with all other treatments (don't know about Gamma Knife) the radical prostatecamy is gone as an option as I understand from 6+ yrs ago so be certain of your course. Your young, there's still a lot of stuff to do! jj
  • somemomojo
    somemomojo Member Posts: 21
    shipjim said:

    I was 58, my father was 58,
    I was 58, my father was 58, I too watched. There was no early detection then so it was advanced when they got in there. He didn't suffer in death, he took what ever radiation and what ever else he could then and died of a heart attack 5 yrs later.
    I'm now 65 I went with the robotic just to "get it out".
    I have minor incontinence,like I wear a mini pad when I golf, lift or stuff like that, I am impotent although I can achieve orgasim with a mini softi!!! I was not diligent with the after treatment of viagra et al and didn't use the recommended pump so some of that may be my fault.
    Having said all this at the time I was diagnosed 3 of 12 cores I don't believe the gamma knife may have been available The robot was about 3 yrs old and Gama knife wasn't available.
    I have no real regrets, I live a very full life with lots of grandkids, flyfishing, jeeping,golfing and anything else I wish to do.
    I wish you good luck and once you decide get on with life.
    My only comment with all other treatments (don't know about Gamma Knife) the radical prostatecamy is gone as an option as I understand from 6+ yrs ago so be certain of your course. Your young, there's still a lot of stuff to do! jj

    Thanks....
    so much JJ - I appreaciate the encouragement and insights. Surgery is scheduled for 3 weeks from today. I'm pretty apprehensive - but decision is made and I'm gonna stay the course as well as I can...I still, like you, have a lot to experience and enjoy ahead ...Life...what a trip !

    Thanks again,
    Kurt
  • robert1
    robert1 Member Posts: 82

    Thanks....
    so much JJ - I appreaciate the encouragement and insights. Surgery is scheduled for 3 weeks from today. I'm pretty apprehensive - but decision is made and I'm gonna stay the course as well as I can...I still, like you, have a lot to experience and enjoy ahead ...Life...what a trip !

    Thanks again,
    Kurt

    Quick Trigger
    Hello Mojo:

    It appears you are pulling the trigger on your decision very quickly. If you are one of those guys who "wants it out", then I wish you the very best. If not, you may want just slow down a little.

    The chance of incontenience is significantly greater with surgery than raditaion therapy. The odds of ED are about the same until you talk to a few dozen patients of both. I have not spoken to a radition patient under 60 years old that suffers from ED now unless he had issues before. Short and long-term cure rates are comparable, but traditional radiation (IMRT/GRT + Brachytherapy) boosts better numbers.

    Once you switch on the greem light, there is no going back. If you are sure then you are sure. If you have any doubts, slow down just a little and process more information from both sides. You have some time.

    Good luck to you!