Recently diagnosed with Gleason score of 9

SV
SV Member Posts: 183 Member
edited June 2023 in Prostate Cancer #1
My biopsy last week revealed a few fives and sixes but the ugliest was a score of 9. The strange thing though is my PSA score of 5 about six months ago. Because of the high Gleason score, my urologist suggested the DaVinci surgery and a second opinion. After numerous recommendations and a consultation with Dr. Kawachi at City of Hope we agreed to his soonest surgery date of October 28 2010. When asking him about diets and so forth, along with the suggestions of garlic, tofu, cooked tomatoes, yogurt and so forth, the seemed to emphasize staying slim and active.

I am 58 year old recently retired competing athlete so I am in great physical shape and well aware of the powers of positive thought. Something else interesting is Dr Kawachi pointing to my girlfriend and saying that she is my best weapon. There is no disagreement there as she has not flinched for one second when it came to standing by my side to beat this disease. She also subscribes to the notion, if you can believe it, you can achieve it.

So far, I only know of the horror stories posted on the internet regarding the outcome of Gleason 9 cases and how there is not much to look forward to after surgery. It is my belief that in due time, I will return to a fully functioning man only minus semen. Is there any positive stories out there to support this possibility?
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Comments

  • lewvino
    lewvino Member Posts: 1,010
    #2
    SV,
    Welcome to the forum and
    SV,
    Welcome to the forum and sorry to read of your diagnosis. I'm at 13 months post Davinci and doing great. My PSA was 7 (4+3) pre surgery then changed to 7 (3+4) post surgery with some type 5 cells spotted.

    I'm not in the same boat as you are but will give you some words of advise that my wife gave me. "remember that those posting on the web are usually the ones with more severe problems". Yes, I've read the horror stores on Gleason 8, 9 and 10's. And also all the bad cases of urinary problems and sexual problems. Just remember that unfortanetly those with good news tend not to post.

    I know of one man local with a Gleason 9, diagnosed about 1 year ago and probably about 6-8 months post surgery. Last time I spoke with him he was doing well (June time frame).

    He was going to be also starting radiation as a follow up following his surgery due to some spreading that was noted during surgery.

    I've read good things about the City of Hope.


    Also glad to read that you have a supportive girlfriend. Please keep us posted on how you do. I enjoy this forum and look at it everyday though I've backed off some from responding to everyone as I used to.


    Larry
  • Kongo
    Kongo Member Posts: 1,166 Member
    #3
    Welcome
    SV,

    I'd like to add my welcome to joining the forum and wish you nothing but the best as you grapple with the many decisions and procedures you will face in the coming months. You seem to have a very positive attitude and a supportive significant other which makes a big difference in successfully fighting prostate cancer.

    I realize you have made a choice with your doctors on surgery in the near term. As you may be aware, there are some conflicting expert opinions about surgery versus radiation for high risk cancer and a recent thread in this forum pretty much plumbs the depth of that well. If you haven't yet looked at it, it might give you some additional questions to run by your medical team in the coming weeks, particularly when you weigh long term quality of life to statistical differences in survival times.
  • SV
    SV Member Posts: 183 Member
    #4
    Kongo said:

    Welcome
    SV,

    I'd like to add my welcome to joining the forum and wish you nothing but the best as you grapple with the many decisions and procedures you will face in the coming months. You seem to have a very positive attitude and a supportive significant other which makes a big difference in successfully fighting prostate cancer.

    I realize you have made a choice with your doctors on surgery in the near term. As you may be aware, there are some conflicting expert opinions about surgery versus radiation for high risk cancer and a recent thread in this forum pretty much plumbs the depth of that well. If you haven't yet looked at it, it might give you some additional questions to run by your medical team in the coming weeks, particularly when you weigh long term quality of life to statistical differences in survival times.

    Thanks for the info. I am
    Thanks for the info. I am familiar with that debate but I was also told that if radiation failed, removing the prostate was no longer possible. But if removing the prostate fails, we can still do radiation. Also, is there a recommendation regarding what type of radiation? I noted on the Loma Linda website that they do something different like proton or photon.

    Since I live in So Cal and count on my Blue Cross insurance, I'd like to stay local. On a brighter note, we are 100% positive that we will beat this cancer--there is zero doubt in any of our minds. For thirty years, I've practiced meditation, yoga, hardcore martial arts and am in great physical shape combined with major dietary changes now in effect. As a matter of fact, everyday lately I feel better.

    By my surgery date of 9/19/10 I will be a walking dynamo of pure positive energy. In fact, I have so much positive energy I glow in the dark. Yeah baby, we are getting ready to roll!
  • CharlieG
    CharlieG Member Posts: 67
    #5
    SV said:

    Thanks for the info. I am
    Thanks for the info. I am familiar with that debate but I was also told that if radiation failed, removing the prostate was no longer possible. But if removing the prostate fails, we can still do radiation. Also, is there a recommendation regarding what type of radiation? I noted on the Loma Linda website that they do something different like proton or photon.

    Since I live in So Cal and count on my Blue Cross insurance, I'd like to stay local. On a brighter note, we are 100% positive that we will beat this cancer--there is zero doubt in any of our minds. For thirty years, I've practiced meditation, yoga, hardcore martial arts and am in great physical shape combined with major dietary changes now in effect. As a matter of fact, everyday lately I feel better.

    By my surgery date of 9/19/10 I will be a walking dynamo of pure positive energy. In fact, I have so much positive energy I glow in the dark. Yeah baby, we are getting ready to roll!

    Awesome attitude, SV! I am
    Awesome attitude, SV! I am two weeks out from my surgery and so far so good. Keep up the meditation, diet and positive attitude - you will do fine!
  • Kongo
    Kongo Member Posts: 1,166 Member
    #6
    SV said:

    Thanks for the info. I am
    Thanks for the info. I am familiar with that debate but I was also told that if radiation failed, removing the prostate was no longer possible. But if removing the prostate fails, we can still do radiation. Also, is there a recommendation regarding what type of radiation? I noted on the Loma Linda website that they do something different like proton or photon.

    Since I live in So Cal and count on my Blue Cross insurance, I'd like to stay local. On a brighter note, we are 100% positive that we will beat this cancer--there is zero doubt in any of our minds. For thirty years, I've practiced meditation, yoga, hardcore martial arts and am in great physical shape combined with major dietary changes now in effect. As a matter of fact, everyday lately I feel better.

    By my surgery date of 9/19/10 I will be a walking dynamo of pure positive energy. In fact, I have so much positive energy I glow in the dark. Yeah baby, we are getting ready to roll!

    Options
    SV, I am also in Southern California. The proton treatment you mentioned in SOCAL is performed at the Loma Linda Medical Center and I consulted with them for my lower risk cancer and do not know if it would be appropriate for your stage or not but I found them very informative when discussing it with them on the phone before my appointment.

    I had a SBRT radiation using CyberKnife (Gleason 6, Stage T1c, 1 of 12 cores positive, PSA 4.3) but mostly they do CK in low or sometimes intermediate risk cancers, although it has been used as a boost to IMRT radiation at a limited study out of Georgetown with positive results for men with advanced cancer.

    And FYI, many men who have had radiation have also gone on to have their prostates removed, although it is a more difficult procedure and the likelihood of increased side effects is a big problem. A doctor who tells you that radiation precludes surgery at a later date is not giving you the whole story. Radiation does cause some scaring, the degree of which is a function of the method of radiation delivery and dosage. It may be more difficult but it is certainly doable and there are surgeons who specialize in this area. In more modern techniques such as SBRT, Tomography, and IMRT, scaring outside the prostate is much, much less of an issue.

    You don’t give the dirty details of your biopsy other than the Gleason 9. Was it a 4+5 or a 5+4? How many of the cores were positive and what was the percent involvement? Was there evidence that prostate cancer had gone beyond the prostate? What was your PSA at the time of your biopsy? Do you know the size of your prostate? All of this leads to a critical question: What is the likelihood that the cancer has moved beyond the prostate? If cancer has spread, why remove it? Cancer within the prostate won’t kill you. It’s when it moves to other organs that it kills you and removing the prostate will not curb the growth of cancer in other areas. Additionally, removing the prostate for a more advanced stage cancer would most likely increase the chances that they would not be able to spare the nerves and they might have to cut closer to the bladder which could significantly impact quality of life with respect to sexual function and urinary continence. They really won’t know that until they’re in the middle of the operation. And while they can certainly do radiation after RP (and in your case they probably would), the procedure increases the odds of developing further sexual or incontinence problems.

    While a PSA of 5 which you mentioned in your first post is not that high in and of itself, as prostate cancer becomes more advanced the cells become less and less differentiated (one of the ways they determine your Gleason score) and they produce less PSA so a relatively low number is not inconsistent with advanced cancer.

    You seem to have fast tracked on a surgery route shortly after your biopsy. I would urge you to consult with a radiation oncologist that specializes in prostate cancer to get a different perspective to consider because you won’t get any do-overs on your decision. While City of Hope seems to push DaVinci robotic surgery, it also offers TomoTherapy in conjunction with IMRT which, from the City of Hope web site, has fewer side effects. Did your doctors schedule you with a radiation specialist at City of Hope or did you rule them out because of some other reason? I would also ask about hormone treatment followed by HDR brachytherapy, followed by IMRT. SV, I don't mean to be giving you the third degree here, just hoping that your decision is fully informed based on a realistic evaluation of your condition and your post left out some of the information that might be useful.

    If the main reason you're pursuing surgery is that you can always do radiation afterward, I would encourage you to get a second opinion. I think you ought to go for the best plan A and not worry about plan B at this point. With regard to your first post, while many men with low risk cancer regain continence and a usable erection after surgery, I believe the statistics for that same outcome in men with advanced cancer is more of a problem. Be sure to ask your surgeon to explain the likelihood of salvaging the nerves given that is a prime spot where advanced cancer tends to go as it leaves the prostate, as well as the potential for penile atrophy, loss of size, and incontinence issues following RP for an advanced cancer patient. Having a positive attitude is great, but a positive attitude will not give you a normal erection if they have to remove the nerves.

    In any event, consultations with other experts won't hurt you except for perhaps an additional copay.

    You have a great attitude and that’s a big plus but hope alone isn’t a strategy, at least in my opinion. While you will probably want to make a decision about treatment fairly quickly, you really want to get this one right. You have time to do some more research and consult with more experts and regardless of what you eventually end up deciding, you will have the satisfaction that you fully checked out alternatives and picked the one best for you.

    I wish you the best.
  • 2ndBase
    2ndBase Member Posts: 220
    #7
    SV said:

    Thanks for the info. I am
    Thanks for the info. I am familiar with that debate but I was also told that if radiation failed, removing the prostate was no longer possible. But if removing the prostate fails, we can still do radiation. Also, is there a recommendation regarding what type of radiation? I noted on the Loma Linda website that they do something different like proton or photon.

    Since I live in So Cal and count on my Blue Cross insurance, I'd like to stay local. On a brighter note, we are 100% positive that we will beat this cancer--there is zero doubt in any of our minds. For thirty years, I've practiced meditation, yoga, hardcore martial arts and am in great physical shape combined with major dietary changes now in effect. As a matter of fact, everyday lately I feel better.

    By my surgery date of 9/19/10 I will be a walking dynamo of pure positive energy. In fact, I have so much positive energy I glow in the dark. Yeah baby, we are getting ready to roll!

    Radiaton
    My Gleason was a 9 with psa of 24. That was over 6 years ago. My treatment was one shot of Lupron, to shrink the tumor, followed by radiation. A follow up biopsy about 2 years ago showed zero cancer left in the prostate. My cancer had already spread and surgery was ruled out as a possibility. Once the cancer has spread doing surgery would be a waste of time.
    My first and second opinions both gave me about a 50% chance to survive 2 years and I give most credit to my success by eliminating the stress in my life and the great support of my wife.
    Though I am now in hospice care I still work and play golf every day. I did not believe the oncologist when he gave me about 6 months to live back in April. I firmly believe I have several years left and if not at least I will have lived my life on my own terms.
    Use your positive energy to inspire others and use your best judgement to make decisions about treatment. I had almost no side effects from the radiation and wish I had refused the Lupron shot but the radiation oncologist said it was necessary because the tumor was so large.
    I wish you all the best in your journey.
  • ezra99
    ezra99 Member Posts: 18
    #8
    SV said:

    Thanks for the info. I am
    Thanks for the info. I am familiar with that debate but I was also told that if radiation failed, removing the prostate was no longer possible. But if removing the prostate fails, we can still do radiation. Also, is there a recommendation regarding what type of radiation? I noted on the Loma Linda website that they do something different like proton or photon.

    Since I live in So Cal and count on my Blue Cross insurance, I'd like to stay local. On a brighter note, we are 100% positive that we will beat this cancer--there is zero doubt in any of our minds. For thirty years, I've practiced meditation, yoga, hardcore martial arts and am in great physical shape combined with major dietary changes now in effect. As a matter of fact, everyday lately I feel better.

    By my surgery date of 9/19/10 I will be a walking dynamo of pure positive energy. In fact, I have so much positive energy I glow in the dark. Yeah baby, we are getting ready to roll!

    Gleason 9
    My gleason score was 9 on biopsy with PSA <10 and about the same age as you. Almost hate to say much because people on the board have some strong opinions and someone will probably clobber me for having surgery. After meeting with medical oncologist, radiation oncologist and urologist I decided to go with surgery with full knowledge that I would probably need to do radiation after surgery. I waited nearly 8 months as I wanted to get full continence and erections unassisted by medications prior to starting radiation. After regaining both, I'm now in salvage radiation as I have a detectable PSA (so this is where someone will probably say - "I told you so" - shouldn't have had surgery). I don't regret having surgery at all. I figured in one day I removed a great amount of cancer cells from my body. I'm hopeful that the ones left remain in the path of my IMRT. If not, next step is intermittent ADT. Not sure if I would recommend this to others but for me it made the most sense but I'm kind of a pragmatic, decisive, let's do it guy. One thing I did consider that I haven't seen mentioned was doing chemotherapy prior to surgery. I think this protocol is still being studied but it was presented to me as a viable option. I don't have any literature on it but I'm sure there is something on the internet - probably under current trials. You might want to talk to medical oncologist about that option.

    Good luck on your journey to victory over PC.
  • BRONX52
    BRONX52 Member Posts: 156
    #9
    ezra99 said:

    Gleason 9
    My gleason score was 9 on biopsy with PSA <10 and about the same age as you. Almost hate to say much because people on the board have some strong opinions and someone will probably clobber me for having surgery. After meeting with medical oncologist, radiation oncologist and urologist I decided to go with surgery with full knowledge that I would probably need to do radiation after surgery. I waited nearly 8 months as I wanted to get full continence and erections unassisted by medications prior to starting radiation. After regaining both, I'm now in salvage radiation as I have a detectable PSA (so this is where someone will probably say - "I told you so" - shouldn't have had surgery). I don't regret having surgery at all. I figured in one day I removed a great amount of cancer cells from my body. I'm hopeful that the ones left remain in the path of my IMRT. If not, next step is intermittent ADT. Not sure if I would recommend this to others but for me it made the most sense but I'm kind of a pragmatic, decisive, let's do it guy. One thing I did consider that I haven't seen mentioned was doing chemotherapy prior to surgery. I think this protocol is still being studied but it was presented to me as a viable option. I don't have any literature on it but I'm sure there is something on the internet - probably under current trials. You might want to talk to medical oncologist about that option.

    Good luck on your journey to victory over PC.</p>

    EZRA99
    I don't think anyone will clobber you for choosing surgery or even tell you "I told you so" for having to get radiation treatment for a rising PSA. The treatment you choose is a personal decision that only you can make. I too had to make this decision and I also chose surgery. For me, the prostate cancer was clinically diagnosed as T1C but turned out to be T3A . My pre-surgery biopsy showed 2 out of 10 cores positive with a gleason of 7. positive cores showed less that 5% cancer. The post surgery pathology showed a prostate that was 75% involved !! I had a positive margin and extraprostatic extension. It surprised me and even my doctors that it was so much worse that originally diagnosed. But I chose to look ahead and not second guess myself.I was happy that the cancer generator was out of my body. My psa was 0 six weeks after surgery but having the positive margin and extraprostatic extension I decided to have adjuvant radiation to hopefully take care of any cancer that may have been left behind. I was continent after my cath came out and have had no side effects from the radiation except for a little urgency and frequency of urination during the radiation treatment. Surgery was in Feb-2010 and completed 8 weeks of radiation in June and PSA is still zero. The radiation you have chosen (imrt) is very accurate and if there are remaining cancer cells in the prostate bed and pelvic region, this treatment should take care of it. Good luck and continue to look ahead !!!! Dan
  • mrspjd
    mrspjd Member Posts: 694 Member
    #10
    ezra99 said:

    Gleason 9
    My gleason score was 9 on biopsy with PSA <10 and about the same age as you. Almost hate to say much because people on the board have some strong opinions and someone will probably clobber me for having surgery. After meeting with medical oncologist, radiation oncologist and urologist I decided to go with surgery with full knowledge that I would probably need to do radiation after surgery. I waited nearly 8 months as I wanted to get full continence and erections unassisted by medications prior to starting radiation. After regaining both, I'm now in salvage radiation as I have a detectable PSA (so this is where someone will probably say - "I told you so" - shouldn't have had surgery). I don't regret having surgery at all. I figured in one day I removed a great amount of cancer cells from my body. I'm hopeful that the ones left remain in the path of my IMRT. If not, next step is intermittent ADT. Not sure if I would recommend this to others but for me it made the most sense but I'm kind of a pragmatic, decisive, let's do it guy. One thing I did consider that I haven't seen mentioned was doing chemotherapy prior to surgery. I think this protocol is still being studied but it was presented to me as a viable option. I don't have any literature on it but I'm sure there is something on the internet - probably under current trials. You might want to talk to medical oncologist about that option.

    Good luck on your journey to victory over PC.</p>

    sad
    It is sad & disappointing to read that someone might hold back and not share their Pca story, history or tx plan because of fear of being "clobbered" or because of "strong opinions" on this discussion board. I would be more afraid that I hadn't considered all the facts or options or read something that would make me ponder if there was another choice I might consider--we all second guess and hope we've made the "right" decision (is there such a thing?) Bottom line, most PCa tx decisions are a gamble, but why not make it a calculated, educated gamble? I am more afraid of not being open to reading a discussion that might provide info I had not previously considered, or viewing an article/study I had interpreted to mean one thing, but find it could actually be interpreted in an entirely different way, exposing loopholes I had not initally seen. The recent PCa forum discussions/debates, sometimes passionate, perhaps heated, (at times, sadly lacking in civility and respect) with several frequent posters, of which I was an occassional participant, should not be misinterpreted as being "for or against" a particular tx, or viewing certain PCa tx choices as the "only right choice" or a "wrong choice." Instead, consider viewing those discussions/debates with an open mind, as an opportunity to expose another way of thinking, an alternative critical thinking pathway leading to better PCa tx choices, or perhaps looking at study data or PCa articles that appear to say one thing, but on second glance, seeing that the article has an agenda to promote. Obviously, everyone is entitled to their own opinion and we all see things from different perspectives. This may be surprising to some, but I am not pro or con RP surgery or radiation, etc. I am, however, passionate about considering all the facts, research, studies, that I can get my hands on and sharing that info with my husband so that he can use all the data we both have collected to make an intelligent, informed, educated and calculated tx decision. I'm sure others will strongly disagree, and take up sides--pity, as we are all fighting the same battle.
  • BRONX52
    BRONX52 Member Posts: 156
    #11
    mrspjd said:

    sad
    It is sad & disappointing to read that someone might hold back and not share their Pca story, history or tx plan because of fear of being "clobbered" or because of "strong opinions" on this discussion board. I would be more afraid that I hadn't considered all the facts or options or read something that would make me ponder if there was another choice I might consider--we all second guess and hope we've made the "right" decision (is there such a thing?) Bottom line, most PCa tx decisions are a gamble, but why not make it a calculated, educated gamble? I am more afraid of not being open to reading a discussion that might provide info I had not previously considered, or viewing an article/study I had interpreted to mean one thing, but find it could actually be interpreted in an entirely different way, exposing loopholes I had not initally seen. The recent PCa forum discussions/debates, sometimes passionate, perhaps heated, (at times, sadly lacking in civility and respect) with several frequent posters, of which I was an occassional participant, should not be misinterpreted as being "for or against" a particular tx, or viewing certain PCa tx choices as the "only right choice" or a "wrong choice." Instead, consider viewing those discussions/debates with an open mind, as an opportunity to expose another way of thinking, an alternative critical thinking pathway leading to better PCa tx choices, or perhaps looking at study data or PCa articles that appear to say one thing, but on second glance, seeing that the article has an agenda to promote. Obviously, everyone is entitled to their own opinion and we all see things from different perspectives. This may be surprising to some, but I am not pro or con RP surgery or radiation, etc. I am, however, passionate about considering all the facts, research, studies, that I can get my hands on and sharing that info with my husband so that he can use all the data we both have collected to make an intelligent, informed, educated and calculated tx decision. I'm sure others will strongly disagree, and take up sides--pity, as we are all fighting the same battle.

    mrspjd
    I honestly believe that most if not all who post on this forum are good people who unfortunately have to deal with this disease. Some,if not most, are passionate about the treatment choices they have made and that's fine. Sharing information about this disease and the various treatment options, personal experiences, informatiom sites etc; is what makes this forum an exceptional site. Time and time again you see people seeking help and advice, and the posters on this site always provide feedback to the requestors. Some of the info provided is based on their personal journey, or something they have researched and are willing to share. All in all, there is no lack of feedback and pertinent information provided. Recently though, some posters have been very passionate and somewhat combative in their posts. Although I agree that all sides should be heard, maybe we need to dial down on the passion meter. Good information is often overlooked when a reader suspects that posters are just trying to one-up each other and the post becomes very uncivil. It's not hard to be civil (especially online). All you have to do is TRY. DAN
  • Kongo
    Kongo Member Posts: 1,166 Member
    #12
    ezra99 said:

    Gleason 9
    My gleason score was 9 on biopsy with PSA <10 and about the same age as you. Almost hate to say much because people on the board have some strong opinions and someone will probably clobber me for having surgery. After meeting with medical oncologist, radiation oncologist and urologist I decided to go with surgery with full knowledge that I would probably need to do radiation after surgery. I waited nearly 8 months as I wanted to get full continence and erections unassisted by medications prior to starting radiation. After regaining both, I'm now in salvage radiation as I have a detectable PSA (so this is where someone will probably say - "I told you so" - shouldn't have had surgery). I don't regret having surgery at all. I figured in one day I removed a great amount of cancer cells from my body. I'm hopeful that the ones left remain in the path of my IMRT. If not, next step is intermittent ADT. Not sure if I would recommend this to others but for me it made the most sense but I'm kind of a pragmatic, decisive, let's do it guy. One thing I did consider that I haven't seen mentioned was doing chemotherapy prior to surgery. I think this protocol is still being studied but it was presented to me as a viable option. I don't have any literature on it but I'm sure there is something on the internet - probably under current trials. You might want to talk to medical oncologist about that option.

    Good luck on your journey to victory over PC.</p>

    Choices
    Ezra,

    I can't imagine anyone telling you "I told you so," but if they did I would simply ignore them. There are no absolute rights or wrongs in dealing with this. You made your decision with your eyes wide open after consulting and looking at all the possibilities to deal with a tough situation and made an informed choice you felt was best for you. That's what we're all supposed to do as informed patients in partnership with our medical team. I hope your recovery continues to bring you positive results.

    Best,
  • lewvino
    lewvino Member Posts: 1,010
    #13
    SV said:

    Thanks for the info. I am
    Thanks for the info. I am familiar with that debate but I was also told that if radiation failed, removing the prostate was no longer possible. But if removing the prostate fails, we can still do radiation. Also, is there a recommendation regarding what type of radiation? I noted on the Loma Linda website that they do something different like proton or photon.

    Since I live in So Cal and count on my Blue Cross insurance, I'd like to stay local. On a brighter note, we are 100% positive that we will beat this cancer--there is zero doubt in any of our minds. For thirty years, I've practiced meditation, yoga, hardcore martial arts and am in great physical shape combined with major dietary changes now in effect. As a matter of fact, everyday lately I feel better.

    By my surgery date of 9/19/10 I will be a walking dynamo of pure positive energy. In fact, I have so much positive energy I glow in the dark. Yeah baby, we are getting ready to roll!

    SV,My dad was treated at
    SV,
    My dad was treated at Loma Linda with Proton for his Prostate Cancer back around 1996 or 1997. He was Gleason 6 Those were the early days of Proton and then they treated all Gleasons at Loma Linda since they were 'learning' what the proton was most effective at.

    I believe now they will not treat as primary treatment above a Gleason 7 but of course check with them.

    From what I understand on surgery following radiation is that some doctors will perform but that it becomes a harder surgery to perform since their is radiation scaring.

    Larry
  • mrspjd
    mrspjd Member Posts: 694 Member
    #14
    BRONX52 said:

    mrspjd
    I honestly believe that most if not all who post on this forum are good people who unfortunately have to deal with this disease. Some,if not most, are passionate about the treatment choices they have made and that's fine. Sharing information about this disease and the various treatment options, personal experiences, informatiom sites etc; is what makes this forum an exceptional site. Time and time again you see people seeking help and advice, and the posters on this site always provide feedback to the requestors. Some of the info provided is based on their personal journey, or something they have researched and are willing to share. All in all, there is no lack of feedback and pertinent information provided. Recently though, some posters have been very passionate and somewhat combative in their posts. Although I agree that all sides should be heard, maybe we need to dial down on the passion meter. Good information is often overlooked when a reader suspects that posters are just trying to one-up each other and the post becomes very uncivil. It's not hard to be civil (especially online). All you have to do is TRY. DAN

    PCa is a passionate subject
    Bronx,
    PCa is a passionate subject, but that is no excuse for lack of civility and respect, whether in person or on the net, when "hot" topics are discussed. I would hope that most users, as I, do not condone or perpetuate the use of violence, on this discussion board or in person, in the form of abuse, personal attack, cruel and insensitive remarks, name calling, etc. No ifs, ands or buts--these SHOULD be the ground rules--are they always the ground rules and does everyone obey them? Of course not (not condoning, just being realistic). I also agree that for the most part, those that post here are sincere in wanting to share and exchange info (with the exception of a few strange trolls that come and go), first looking for help/advice, then, many staying & giving back, becoming the lay "helpers/advisors." Everyone is here for a different combination of needs/reasons & networking, some to have their questions answered, get support, some just to give advice & be supportive, some to be open-minded and learn--using the info here to further their research, and some, who just want confirmation that the decision they made was right, their mind already made up, and no discussion, debate, etc. will change that--that's OK too--to each his own.

    As you perceptively indicated, and I agree, at times the debates appear to take on the characteristics of a turf battle and when that occurs, many can be turned off and lose the essense of the discussion--isn't that what happens in TV political debates also (again, not condoning, wish they were more civil too)? Keep in mind that one can stop reading or turn off the TV, whichever the case, as no one is forcing anyone to read or watch
    something stressful, upsetting, disturbing, or disrespectful. It's kind of like a car wreck on the fwy, no one wants to look, but everyone slows down, just to peek!

    Rambling here...Guess the bottom line is simple: play nice, share your toys, keep an open mind and be civil!
  • Trew
    Trew Member Posts: 932 Member
    #15
    lewvino said:

    SV,My dad was treated at
    SV,
    My dad was treated at Loma Linda with Proton for his Prostate Cancer back around 1996 or 1997. He was Gleason 6 Those were the early days of Proton and then they treated all Gleasons at Loma Linda since they were 'learning' what the proton was most effective at.

    I believe now they will not treat as primary treatment above a Gleason 7 but of course check with them.

    From what I understand on surgery following radiation is that some doctors will perform but that it becomes a harder surgery to perform since their is radiation scaring.

    Larry

    My Pre-surgery gleason was 8
    My Pre-surgery gleason was 8 then moved up to a 9 after surgery. Loma Linda told me not to wait but to go ahead with surgery as soon as possible. As a patient at LLU 09/10 (nov- Jan) I got a combination of proton and then radiation. I didn't meet any pateints who weren't getting the combo treatment with gleasons of 8 or more.

    also, my primary tumor was right at the top of the prostate, right undr the bladder/bladder neck. Like in real estate, location is everything.

    SV, I am sorry to hear you are having to go through this. Don't read my pad diaries- just discourage you like it does me.

    My, I do hate PC!!
  • Steve199
    Steve199 Member Posts: 3
    #16
    Trew said:

    My Pre-surgery gleason was 8
    My Pre-surgery gleason was 8 then moved up to a 9 after surgery. Loma Linda told me not to wait but to go ahead with surgery as soon as possible. As a patient at LLU 09/10 (nov- Jan) I got a combination of proton and then radiation. I didn't meet any pateints who weren't getting the combo treatment with gleasons of 8 or more.

    also, my primary tumor was right at the top of the prostate, right undr the bladder/bladder neck. Like in real estate, location is everything.

    SV, I am sorry to hear you are having to go through this. Don't read my pad diaries- just discourage you like it does me.

    My, I do hate PC!!

    HIfu was my choice for my 9
    After several sleepless nights I decided to have HIFU as my first choice of treatment for my Gleason 9. This was in Oct. 22, 2009 that I had the treatment. Next month I go in for my 1 year PSA test. The previous 3 results have came back .001. I'm very thankful for that. It has been a success so far. The reasons for choosing HIFU was I was told that they felt 70% chance to get the cancer the first time because my prostrate was small and the cancer was all on the right side. Because of where the high grade cancer was located in the prostrate the Dr. felt it would be to my benefit to treat the nerve bundles on the right side. I agreed that the reason I was there was to get ride of the cancer now the first time so take them if he felt it was to my benefit. He did. Second I was told that I would still be able to still do HIFU again, radiation or surgery if the cancer came back. I also have had some scaring in my urethra and I have had to self cath at times. This is becoming a less of a problem and I am sure that will pass in a short time. All of these are of no concern to me. The other 3 men treated the same day are all ok with no problems at all and all have PSA reading of less than .01. Dr. told us that it was a possibility of 17% that scarring would occur and I was the lucky one. That said I also have the best PSA reading. I think he fried me more that the others because of my higher grade of cancer.

    Don't let any one sway you from your decision on your choice of first line of treatment. The first and most important is the skill of the Doctor of your choice. I think it's the most important -not the treatment. That said a Gleason 9 in my option must be considered completely different. We in my option have to play ball completely different that Gleason 6. Still all of this is a individual thing. All treatments can have some side effects some men experience them some don't. I also think we need to think not only on the choices now but also what if's if it does return. I might add the Proton people in Oklahoma City would not recommend their treatment for me.

    Best of luck and I know from your post your attitude and mind will conquer the beast.
  • SV
    SV Member Posts: 183 Member
    #17
    Steve199 said:

    HIfu was my choice for my 9
    After several sleepless nights I decided to have HIFU as my first choice of treatment for my Gleason 9. This was in Oct. 22, 2009 that I had the treatment. Next month I go in for my 1 year PSA test. The previous 3 results have came back .001. I'm very thankful for that. It has been a success so far. The reasons for choosing HIFU was I was told that they felt 70% chance to get the cancer the first time because my prostrate was small and the cancer was all on the right side. Because of where the high grade cancer was located in the prostrate the Dr. felt it would be to my benefit to treat the nerve bundles on the right side. I agreed that the reason I was there was to get ride of the cancer now the first time so take them if he felt it was to my benefit. He did. Second I was told that I would still be able to still do HIFU again, radiation or surgery if the cancer came back. I also have had some scaring in my urethra and I have had to self cath at times. This is becoming a less of a problem and I am sure that will pass in a short time. All of these are of no concern to me. The other 3 men treated the same day are all ok with no problems at all and all have PSA reading of less than .01. Dr. told us that it was a possibility of 17% that scarring would occur and I was the lucky one. That said I also have the best PSA reading. I think he fried me more that the others because of my higher grade of cancer.

    Don't let any one sway you from your decision on your choice of first line of treatment. The first and most important is the skill of the Doctor of your choice. I think it's the most important -not the treatment. That said a Gleason 9 in my option must be considered completely different. We in my option have to play ball completely different that Gleason 6. Still all of this is a individual thing. All treatments can have some side effects some men experience them some don't. I also think we need to think not only on the choices now but also what if's if it does return. I might add the Proton people in Oklahoma City would not recommend their treatment for me.

    Best of luck and I know from your post your attitude and mind will conquer the beast.

    When I do stuff, I do it big.
    Thanks again amigo. Here is my biopsy report:

    A) Right apex adenocarinoma (Gleason score 4+3=7) involving 35% of the specimen (two of two cores contain cancer) Gleason pattern four comprises 40% of the cancer. Cancer length 0.42 cm

    B) Right mid adenocarinoma (Gleason score 4+5=9)involving 40% of the specimen (two of two cores contain cancer). Cancer length 0.6 centimeter

    C) Right base adenocarinoma (Gleason score 3+4=7). Involving 10% of the specimen (One of one cores contain cancer). Gleason pattern 4 comprises 30% of the cancer. Cancer length 0.1 cm

    D) Right Lat Apex adenocarinoma (Gleason 3+4=7) Involving 75% of the specimen (One of one cores contain cancer) Gleason pattern four comprises 30% of the cancer. Cancer length 0.68 cm

    E) Right lat mid adenocarinoma (Gleason score 3+4=7) Involving 75% of the specimen (four of four cores contain cancer) Gleason pattern four comprises 40% of the cancer. Cancer length 2.1 cm

    F) Right lat base adenocarinoma (Gleason score 4+3=7) Involving 10% of the specimen (one of one cores contain cancer) Gleason patter four comprises 75% of the cancer. Length 0.13 cm

    G) Left apex benign prostatic tissue. Mild atrophy. Mild chronic inflammation.

    H) Left mid benign prostatic tissue.

    I) Left base benign prostatic tissue.

    J) Left lat apex benign prostatic tissue.

    K) Left lat mid benign prostatic tissue.

    L) Left lat base benign prostatic tissue.

    Over all:
    12% organ confined
    85% Extraprostatic extension
    73% Seminal vesicle involvement

    So what do you guys think? It's a tough challenge but we are confident we can win.
  • SV
    SV Member Posts: 183 Member
    #18
    Kongo said:

    Options
    SV, I am also in Southern California. The proton treatment you mentioned in SOCAL is performed at the Loma Linda Medical Center and I consulted with them for my lower risk cancer and do not know if it would be appropriate for your stage or not but I found them very informative when discussing it with them on the phone before my appointment.

    I had a SBRT radiation using CyberKnife (Gleason 6, Stage T1c, 1 of 12 cores positive, PSA 4.3) but mostly they do CK in low or sometimes intermediate risk cancers, although it has been used as a boost to IMRT radiation at a limited study out of Georgetown with positive results for men with advanced cancer.

    And FYI, many men who have had radiation have also gone on to have their prostates removed, although it is a more difficult procedure and the likelihood of increased side effects is a big problem. A doctor who tells you that radiation precludes surgery at a later date is not giving you the whole story. Radiation does cause some scaring, the degree of which is a function of the method of radiation delivery and dosage. It may be more difficult but it is certainly doable and there are surgeons who specialize in this area. In more modern techniques such as SBRT, Tomography, and IMRT, scaring outside the prostate is much, much less of an issue.

    You don’t give the dirty details of your biopsy other than the Gleason 9. Was it a 4+5 or a 5+4? How many of the cores were positive and what was the percent involvement? Was there evidence that prostate cancer had gone beyond the prostate? What was your PSA at the time of your biopsy? Do you know the size of your prostate? All of this leads to a critical question: What is the likelihood that the cancer has moved beyond the prostate? If cancer has spread, why remove it? Cancer within the prostate won’t kill you. It’s when it moves to other organs that it kills you and removing the prostate will not curb the growth of cancer in other areas. Additionally, removing the prostate for a more advanced stage cancer would most likely increase the chances that they would not be able to spare the nerves and they might have to cut closer to the bladder which could significantly impact quality of life with respect to sexual function and urinary continence. They really won’t know that until they’re in the middle of the operation. And while they can certainly do radiation after RP (and in your case they probably would), the procedure increases the odds of developing further sexual or incontinence problems.

    While a PSA of 5 which you mentioned in your first post is not that high in and of itself, as prostate cancer becomes more advanced the cells become less and less differentiated (one of the ways they determine your Gleason score) and they produce less PSA so a relatively low number is not inconsistent with advanced cancer.

    You seem to have fast tracked on a surgery route shortly after your biopsy. I would urge you to consult with a radiation oncologist that specializes in prostate cancer to get a different perspective to consider because you won’t get any do-overs on your decision. While City of Hope seems to push DaVinci robotic surgery, it also offers TomoTherapy in conjunction with IMRT which, from the City of Hope web site, has fewer side effects. Did your doctors schedule you with a radiation specialist at City of Hope or did you rule them out because of some other reason? I would also ask about hormone treatment followed by HDR brachytherapy, followed by IMRT. SV, I don't mean to be giving you the third degree here, just hoping that your decision is fully informed based on a realistic evaluation of your condition and your post left out some of the information that might be useful.

    If the main reason you're pursuing surgery is that you can always do radiation afterward, I would encourage you to get a second opinion. I think you ought to go for the best plan A and not worry about plan B at this point. With regard to your first post, while many men with low risk cancer regain continence and a usable erection after surgery, I believe the statistics for that same outcome in men with advanced cancer is more of a problem. Be sure to ask your surgeon to explain the likelihood of salvaging the nerves given that is a prime spot where advanced cancer tends to go as it leaves the prostate, as well as the potential for penile atrophy, loss of size, and incontinence issues following RP for an advanced cancer patient. Having a positive attitude is great, but a positive attitude will not give you a normal erection if they have to remove the nerves.

    In any event, consultations with other experts won't hurt you except for perhaps an additional copay.

    You have a great attitude and that’s a big plus but hope alone isn’t a strategy, at least in my opinion. While you will probably want to make a decision about treatment fairly quickly, you really want to get this one right. You have time to do some more research and consult with more experts and regardless of what you eventually end up deciding, you will have the satisfaction that you fully checked out alternatives and picked the one best for you.

    I wish you the best.

    x

    x
  • bdhilton
    bdhilton Member Posts: 866 Member
    #19
    SV said:

    Thanks for the info. I am
    Thanks for the info. I am familiar with that debate but I was also told that if radiation failed, removing the prostate was no longer possible. But if removing the prostate fails, we can still do radiation. Also, is there a recommendation regarding what type of radiation? I noted on the Loma Linda website that they do something different like proton or photon.

    Since I live in So Cal and count on my Blue Cross insurance, I'd like to stay local. On a brighter note, we are 100% positive that we will beat this cancer--there is zero doubt in any of our minds. For thirty years, I've practiced meditation, yoga, hardcore martial arts and am in great physical shape combined with major dietary changes now in effect. As a matter of fact, everyday lately I feel better.

    By my surgery date of 9/19/10 I will be a walking dynamo of pure positive energy. In fact, I have so much positive energy I glow in the dark. Yeah baby, we are getting ready to roll!

    A well known surgeon I know
    A well known surgeon I know once told me that when he is called to do salvage surgery when radiation fails he schedules the surgery with a backup surgeon then calls in sick…He really does not do this but his point is that salvage surgery after radiation is a difficult procedure at best and the results are not favorable…

    The facts are that there are a lot of treatment choices and that is one of the hard things to deal with this cancer “sifting” through all of the “snake oil salesmen pitches”… but this is a decision you need to be conformable with and you have and believe you did the best possible thing…

    BTW... I elected to have open surgery back in March this year all is as good as it can get right now....

    Best of luck to you fighting this beast PCa
  • mrspjd
    mrspjd Member Posts: 694 Member
    #20
    SV -- DHEA supplements
    I thought I read in your initial thread post that you were taking testosterone injections, perhaps part of your body building regime, but it must have been edited out, as I can't find that reference now. You seem to understand the connection between the testosterone & PCa, as I believe you indicated you were going to stop the injections. Might you also have taken DHEA over-the-counter supplements? I ask because for two years prior to pjd's T3 dx (locally advanced, Gleason 3+4=7, 9/12 cores positive, high volume PCa), he took DHEA which increases testosterone levels (we all know that PCa loves to feed on testosterone). Come to find out just how dangerous this supplement is. After dx, we asked several drs how/if this supplement could have affected pjd's PCa. None believed it "caused" the cancer, but some suggested it might have speeded up the growth of cancer cells lying dormant---this was only a WAG on the part of the docs since they all said they just don't know. Although pjd had researched DHEA prior to taking it, along with other supplements he was taking at the time, we have both tried to spread the word about how dangerous DHEA supplements are (the warnings are out there, but unfortunately, they are buried in the literature) to men, in particular, with regard to PCa.
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member
    #21
    SV said:

    When I do stuff, I do it big.
    Thanks again amigo. Here is my biopsy report:

    A) Right apex adenocarinoma (Gleason score 4+3=7) involving 35% of the specimen (two of two cores contain cancer) Gleason pattern four comprises 40% of the cancer. Cancer length 0.42 cm

    B) Right mid adenocarinoma (Gleason score 4+5=9)involving 40% of the specimen (two of two cores contain cancer). Cancer length 0.6 centimeter

    C) Right base adenocarinoma (Gleason score 3+4=7). Involving 10% of the specimen (One of one cores contain cancer). Gleason pattern 4 comprises 30% of the cancer. Cancer length 0.1 cm

    D) Right Lat Apex adenocarinoma (Gleason 3+4=7) Involving 75% of the specimen (One of one cores contain cancer) Gleason pattern four comprises 30% of the cancer. Cancer length 0.68 cm

    E) Right lat mid adenocarinoma (Gleason score 3+4=7) Involving 75% of the specimen (four of four cores contain cancer) Gleason pattern four comprises 40% of the cancer. Cancer length 2.1 cm

    F) Right lat base adenocarinoma (Gleason score 4+3=7) Involving 10% of the specimen (one of one cores contain cancer) Gleason patter four comprises 75% of the cancer. Length 0.13 cm

    G) Left apex benign prostatic tissue. Mild atrophy. Mild chronic inflammation.

    H) Left mid benign prostatic tissue.

    I) Left base benign prostatic tissue.

    J) Left lat apex benign prostatic tissue.

    K) Left lat mid benign prostatic tissue.

    L) Left lat base benign prostatic tissue.

    Over all:
    12% organ confined
    85% Extraprostatic extension
    73% Seminal vesicle involvement

    So what do you guys think? It's a tough challenge but we are confident we can win.

    Surgery for Extraprostatic Cancer?
    If I recall correctly, surgery is NOT recommended if it is clear that the cancer has already metastasized beyond the prostate capsule.

    Reason? Since the cancer has already spread beyond the prostate and since other therapies -- such as radiation, chemo and hormonal therapy -- will be required to treat it, there's no need to do surgery with all of the attendant risks involved.

    According to your report, 85% of the cancer has already spread outside of your prostate and 73% of your seminal vesicles are already involved. So, I don't think surgery would be your best course of action at this point in time. I'm sure others will chime in to let you know if they think I'm wrong.

    Best wishes to you in overcoming this daunting challenge!

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