Recently Diagnosed with Prostate Cancer

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Comments

  • erisian
    erisian Member Posts: 107

    Hi
    If I was you I would definitely pursue finding more about active surveillance as a treatment option.......it may well be that you have indolent cancer, which means not likely to spread.there may be a very good chance that you can continue the rest of your life without any other treatment..did the doc that you saw discuss active surveillance as a treatment option.I've done a lot of research during the past year since I've been diagnosed.......before my diagnosis I did not know what a prostate was, now I am a prostate cancer groupie.

    If you click on my name you will find what I have done, and rational for treatment.

    Ira

    AS
    If you aren't sufficiently confused yet, see this thread, sort of on the subject of active surveillance:
    http://csn.cancer.org/node/187174
    It is information you should have before making a treatment decision.
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    boatteam said:

    Interesting theroy
    Ira,
    yes, Doc did mention the active survelience, or watch and wait. He currently has over 250 patients in this program. He did not discount the program for me, however because my gleason was 7 and my PSA's has been rising, he didn't feel comfortable in recommending it. He did however want my pathology slides to review. He said in some cases his diagnosis of the issue differed from the Pathologist. Sometimes going up in Gleason, sometimes going down. Because I only had a 10% and 20% in the only two positive cores, I think their might be hope that my gleason goes down and we can open our option range.

    I undertand what you mean about becoming a resident expert.I am learing alot. I have always had DRE's every three years for the last 15 as part of my annual physical, then when I turned fifty thress years ago, seem more doctors are fasinated with sticking their finger up my bum and drawing blood. Always was a kind of a joke between me and whoever the unfortuante doc was that got elected to do it..(Gonna buy me dinner after this doc??).

    Not sure which way I am going now.. I have a serious headache from reading posts and brochures on all the different treatments. Never know who is telling the truth or is it a sales pitch for some clinic somewhere. Doc told me yesterday that the Cancer business in the US is a multi BILLION dollar industry. With that much money involved in anything, opinions get swayed and truths gets streached. Guess we just do our home work and find someone we trust to guide us through this process.

    I wish there was a website that gave unbiased numbers on individual doctors sucess rates and failures so you are able to compare apples to apples instead of going off what the brochure says all the time.

    Good luck with your program, I'll read about it today and may have more question after.

    Stay well

    consider having your parrifin blocks
    reviewed by an expert in the field. There are appr 5 to10 of them in the usa....dr epstein , johhs hopkins is one..........analzing the the gleason scores is an art, and really requires an expert.

    Also lock into the tests that I have taken.

    agree , a good part of this is profit motivated, additionally many doctors knowledge is not inclusive....

    Ira
  • edmund
    edmund Member Posts: 19 Member
    Explore all options
    I think your physician is doing you a diservice in rushing you to make a decision in a few weeks. Take your time and explore all the options. Remember, when talking to a radiologist expect radiation therapy to be his choice. Like wise, when talking to a surgeon expect surgery to be recommended. Do your research on all treatments and there side affects. Every option has the risk of side affects. Your age is in your favor to avoid impotence and incontinece no matter what you choose.

    If you are in South Florida you have the most experienced surgeon doing laproscopic surgery perhaps in all the US. Google Dr Arnon Krongrad and read his very informative web site. He welcomes consultations.
    Edmund
  • jbrick
    jbrick Member Posts: 4
    2ndBase said:

    Options
    I was 52 with psa 24 and gleason 9. Given a 50% chance to live 2 years. Had to take one shot of lupron to shrink the tumor then took radiation treatments. Have had no treatment since. Radiation killed ALL cancer in the prostate which was confirmed by a biopsy 16 months ago. I am now 59 and doing well though the cancer had already spread and I have to accept that. If I had not had the hormone treatment I probably would not have lost my sex drive/ ability to perform. I have very little side effects from the radiation. I have bone pain now because thats where the cancer is. Talk to a radiologist and see what he thinks. You may find that using that treatment will give you much less side effects. Whatever you decide will change your life so get used to it and try to keep undo stress out of your life from now on. All the best, Mark

    2nd base
    I have been searching for someone in a somewhat similar situation (high gleason score). But, first of all I wish you and your family the best. Your advice about taking the stress out of your life is a good one and one that I working on making adjustments for the future.
    I am now 52 and recently diagnosed with Prostate Cancer, my PSA 9.2 and gleason is a 9. After researching and speaking to specialists I have decided to go in a similar direction as you with treatments . I have recently started treatments with hormones and I am 10 days into a radiation seed implant and very soon I will be going through 5 weeks of low beam radiation. I am concerned about the hormone side effects too, but as you mentioned our lives have changed and we have no choice but to adjust.
    Any advice that you have will be well received as I am the newest member of the Gleason 9 club.
    Best Wishes, jbrick
  • Trew
    Trew Member Posts: 932 Member
    boatteam said:

    thanks Trew
    I see there is one in Jacksonville. Do you have any expirence with them or the procedure??

    Proton Centers
    I had 15 proton treatments and 24 radiation treatments at Loma Linda U. Good experience. I have been posting a lot about proton treatment- about everything I can find on it. A recent post was on the monthly newsletter- and links to testimonials and other interesting stuff.

    Proton treratment is no fluke- it is serious treatment that has a good track record in treating PC and less serious side effects- at least that is how I see it. ED and incontinency are, IMHO, serious side effects.

    I wish you well. PC is serious stuff for some, less serous for others. I know men who had surgery years ago and now seem to be doing fine, for what I know. But there are a lot of men like me who post their post-surgery problems here all the time.

    Again and again, I would suggest you get a copy of Robert Marcknini's book on prostate cancer and proton treatment and read it.

    I do wish you well, in the fullest meaning of the word.
  • Trew
    Trew Member Posts: 932 Member
    jbrick said:

    2nd base
    I have been searching for someone in a somewhat similar situation (high gleason score). But, first of all I wish you and your family the best. Your advice about taking the stress out of your life is a good one and one that I working on making adjustments for the future.
    I am now 52 and recently diagnosed with Prostate Cancer, my PSA 9.2 and gleason is a 9. After researching and speaking to specialists I have decided to go in a similar direction as you with treatments . I have recently started treatments with hormones and I am 10 days into a radiation seed implant and very soon I will be going through 5 weeks of low beam radiation. I am concerned about the hormone side effects too, but as you mentioned our lives have changed and we have no choice but to adjust.
    Any advice that you have will be well received as I am the newest member of the Gleason 9 club.
    Best Wishes, jbrick

    Jb, sounds like my scores-
    Jb, sounds like my scores- PSA under ten- gleason 9 (5 + 4). I did have surgery- I am not sure why since my gleason was so high. Boy, I was dumb when all this hit me. I read a few books, but just did not consult enough options. I know more now. I should have skipped surgery and just taken the hormone shots and rad. Live (or die) and learn. Sometimes there just are no easy choices with PC.
  • LakeH
    LakeH Member Posts: 1
    boatteam said:

    I am learning that..
    yes.. I read these websites about the different types of treatments and there is a maze of them. All of them use different scales to make their sucess rates look good and I am finding out that, like any good sale pitch, most have side/after effects that nobody like too talk about.
    I was reading a brochure from a place in Atlanta, Prostrcision:

    (http://storage.pardot.com/1174/29064/Q_A_Cancer_Free_Guide.pdf)

    They are an implant place, but their brochure brought up a very good point that I really hadn't considered, not too many of the website that I have read about talk of cure vs treatment. I am finding out many way and methods of treating what I have been curesed with, but few talk about what we all really want is cure. Of course this is another sales brochure pumping their methods over others, but they do make some interesting points. One with surgery, I may be stuck with incontenence for several months after surgery. These folks near guarentee that there is no issues with that (unless you have it when you go in)because there is no surgery involved. Some implanting of seeds and the some Xray type rays shot into the area over a 6 week period. One down side to them is they only do it in GA and taking 6 weeks off work might be an issue.

    Another good point them make is the Individual Cure Rate, that they suggest all doctors should have. It is basically following their patients for 10 yrs after the procedures and tracking if the issue returns. According to their brochure, the covered most all the procedures out there, with the different types of methods used to determine cure and theirs (of course) is the highest with 88% cure (defined as a PSA of <.02ng/ml after 10yrs). The surgery is next with around 80% and then heads down from there. The biggest difference between the two is the incontenence issue.

    Another important point the brochure made is to get a second opinion on the biopsy results from another lab all together. As the warning signs go, I shouldn't have this, My father or uncles or grandfathers on either side never had an issue. Other than a high PSA count, (which my dad has had for years and several negative biopsys) I have none of the warning signs or symptoms. Even my personal Doc was surprised with the findings came back positive. So I will definatly be asking for another opinion, although not expecting anything different in the results, I feel I should. Being Half Irish, if it wasn't for bad luck I would have any at all, and that said, my biopsy would have been one of twenty that the lab was working on before lunch and mixed up with someone elses. Maybe this is Gods way of telling me to straighten up a bit of a wake up. At this point, I don't know, but will be getting the second opinion and possibly a second biopsy, (which to date has been the most painfully thing I have ever had done, (and I have been shot twice, stabbed once and broke a bunch of bones and none of those compared to that biopsy).

    I have an appoint this morning with Dr. Manoharan at the University of Miami Cancer center. I'll be talking to him about some of these other treatments and trying to get the straight skinny of what I am dealing with. His resume states that he is a proponent of new treatments and procedures to treat cancers. He works for Dr Soloway and with Dr. Kava, all who have stellar reputations (from what I have read) in this field.

    Thanks for all the replies and support from you and the others.</p>

    Biopsy should not be painful....
    Boatteam,

    I was surprised by your statement:

    " At this point, I don't know, but will be getting the second opinion and possibly a second biopsy, (which to date has been the most painfully thing I have ever had done, (and I have been shot twice, stabbed once and broke a bunch of bones and none of those compared to that biopsy)."

    If your biopsy was painful, I question the competance of your doctor. You should have received a novocaine (or other anaesthetic) shot in/around the prostate (I couldn't actually see where) which was like a pin prick. The actual taking of the core samples was like a dull thump (some liken it to a snap of a rubber band) which I hardly felt.

    Before getting another biopsy, definately ask how they reduce or eliminate the pain.

    Best of luck with your treatment...
  • JR1949
    JR1949 Member Posts: 230
    I was 61 when I was diagnosed with prostate cancer beast February 2009. My PSA was 22, Gleason of 7 and biopsy all 12 cancerous. I discussed all of the options and researched and decided that radical prostatectomy was by best choice with such a high PSA which was by the way 19 in December 2008. My urologist told me that if you had radiation and the cancer should come back you cannot have surgery because the radiation leaves scar tissue, therefore your treatment options are reduced. You have to look at your situation, your age and decide whether you want quality of life or quantity of life.

    Almost 14 months later, my PSA was last tested as 0.008 in October :), I still have incontinence which I believe is treatable and intend to discuss options when I see my urologist Monday for 6 mo. checkup. Also I still have ED as in next to nothing down there.
    However I am alive and still cancer free and I have a very understanding wife of 36 years.

    Whatever you decide I wish you the best. Keep a positive attitude, pray and ask for prayers. I have survived cancer and my wife survived stage 4 melanoma, diagnosed June 2009, four treatments of IL2 chemotherapy and CT, PET scans March 2010 showed her cancer free :)!!!
    We both stood together through our journeys and we kept a positive attitude, prayed and asked for prayers.
  • Ken_186
    Ken_186 Member Posts: 1
    Your concerns about ProstRcision
    I was just diagnosed 1 week ago. Age 68, PSA 6.8, 1 of 12 tissue samples positive, Gleason 6. It's incredible how much I've learned about PC in the past week. I've eliminated 8 of the 10 possible treatments. Remaining are ProstRcision in Atlanta or robotic prostratectomy. Both methods appear to have a high likelihood of long term success coupled with some likelihood of retaining sexual performance.

    I have visited the ProstRcision Center in Atlanta and was impressed with everything. The daily external beam radiation treatments go on for several weeks, so it would be necessary for you to remain in Atlanta during treatment. I live just 45 minutes from their treatment facility. They offer a free, over the phone consultation, but you must fax them your biopsy results to get things started.
  • lewvino
    lewvino Member Posts: 1,010
    Ken_186 said:

    Your concerns about ProstRcision
    I was just diagnosed 1 week ago. Age 68, PSA 6.8, 1 of 12 tissue samples positive, Gleason 6. It's incredible how much I've learned about PC in the past week. I've eliminated 8 of the 10 possible treatments. Remaining are ProstRcision in Atlanta or robotic prostratectomy. Both methods appear to have a high likelihood of long term success coupled with some likelihood of retaining sexual performance.

    I have visited the ProstRcision Center in Atlanta and was impressed with everything. The daily external beam radiation treatments go on for several weeks, so it would be necessary for you to remain in Atlanta during treatment. I live just 45 minutes from their treatment facility. They offer a free, over the phone consultation, but you must fax them your biopsy results to get things started.

    Ken_186. Hi and welcome to
    Ken_186. Hi and welcome to our forum. Don't believe I've seen you post before. Good luck on your decision. I had also visited the ProstRcision Center in Atlanta. I was impressed with the knowledge and research of the Main Doc there but ended up choosing Robotic. The main reason was that when they ran my stats through there database cure rate I didn't rank high enough at being cancer free in 10 years following there treatment. My cancer was more involved then your stats so you should do great with either ProstRcision or the robotic.

    Good luck in your treatments and keep us posted.

    Larry age 55
    Live Near Chattanooga Tn.
  • mrdezzy
    mrdezzy Member Posts: 23
    Ken_186 said:

    Your concerns about ProstRcision
    I was just diagnosed 1 week ago. Age 68, PSA 6.8, 1 of 12 tissue samples positive, Gleason 6. It's incredible how much I've learned about PC in the past week. I've eliminated 8 of the 10 possible treatments. Remaining are ProstRcision in Atlanta or robotic prostratectomy. Both methods appear to have a high likelihood of long term success coupled with some likelihood of retaining sexual performance.

    I have visited the ProstRcision Center in Atlanta and was impressed with everything. The daily external beam radiation treatments go on for several weeks, so it would be necessary for you to remain in Atlanta during treatment. I live just 45 minutes from their treatment facility. They offer a free, over the phone consultation, but you must fax them your biopsy results to get things started.

    ProsRicision
    Ken, I have almost the identical scores that you had in 2010. I too have visited the ProstRcision center, I happen to live in Atlanta area. I am searching for just one guy who has had gone through the procedure to share their experience. The brochures do have patient testimonials but like all good marketeers they are probably "selected" by the company. What therapy did you choose and can you tell me your reasoning...thanks so much
  • mrdezzy
    mrdezzy Member Posts: 23
    boatteam said:

    I am learning that..
    yes.. I read these websites about the different types of treatments and there is a maze of them. All of them use different scales to make their sucess rates look good and I am finding out that, like any good sale pitch, most have side/after effects that nobody like too talk about.
    I was reading a brochure from a place in Atlanta, Prostrcision:

    (http://storage.pardot.com/1174/29064/Q_A_Cancer_Free_Guide.pdf)

    They are an implant place, but their brochure brought up a very good point that I really hadn't considered, not too many of the website that I have read about talk of cure vs treatment. I am finding out many way and methods of treating what I have been curesed with, but few talk about what we all really want is cure. Of course this is another sales brochure pumping their methods over others, but they do make some interesting points. One with surgery, I may be stuck with incontenence for several months after surgery. These folks near guarentee that there is no issues with that (unless you have it when you go in)because there is no surgery involved. Some implanting of seeds and the some Xray type rays shot into the area over a 6 week period. One down side to them is they only do it in GA and taking 6 weeks off work might be an issue.

    Another good point them make is the Individual Cure Rate, that they suggest all doctors should have. It is basically following their patients for 10 yrs after the procedures and tracking if the issue returns. According to their brochure, the covered most all the procedures out there, with the different types of methods used to determine cure and theirs (of course) is the highest with 88% cure (defined as a PSA of <.02ng/ml after 10yrs). The surgery is next with around 80% and then heads down from there. The biggest difference between the two is the incontenence issue.

    Another important point the brochure made is to get a second opinion on the biopsy results from another lab all together. As the warning signs go, I shouldn't have this, My father or uncles or grandfathers on either side never had an issue. Other than a high PSA count, (which my dad has had for years and several negative biopsys) I have none of the warning signs or symptoms. Even my personal Doc was surprised with the findings came back positive. So I will definatly be asking for another opinion, although not expecting anything different in the results, I feel I should. Being Half Irish, if it wasn't for bad luck I would have any at all, and that said, my biopsy would have been one of twenty that the lab was working on before lunch and mixed up with someone elses. Maybe this is Gods way of telling me to straighten up a bit of a wake up. At this point, I don't know, but will be getting the second opinion and possibly a second biopsy, (which to date has been the most painfully thing I have ever had done, (and I have been shot twice, stabbed once and broke a bunch of bones and none of those compared to that biopsy).

    I have an appoint this morning with Dr. Manoharan at the University of Miami Cancer center. I'll be talking to him about some of these other treatments and trying to get the straight skinny of what I am dealing with. His resume states that he is a proponent of new treatments and procedures to treat cancers. He works for Dr Soloway and with Dr. Kava, all who have stellar reputations (from what I have read) in this field.

    Thanks for all the replies and support from you and the others.</p>

    Atlanta Clinic
    Boatman, I too and considering the Atlanta Clinic...what therapy did you chose and if not the Atlanta clinic why not...if you did do the Atlanta clinic can you share your opinion of the results and process. I am trying to make my decision shortly. Thanks
  • Timlong
    Timlong Member Posts: 42
    Ken_186 said:

    Your concerns about ProstRcision
    I was just diagnosed 1 week ago. Age 68, PSA 6.8, 1 of 12 tissue samples positive, Gleason 6. It's incredible how much I've learned about PC in the past week. I've eliminated 8 of the 10 possible treatments. Remaining are ProstRcision in Atlanta or robotic prostratectomy. Both methods appear to have a high likelihood of long term success coupled with some likelihood of retaining sexual performance.

    I have visited the ProstRcision Center in Atlanta and was impressed with everything. The daily external beam radiation treatments go on for several weeks, so it would be necessary for you to remain in Atlanta during treatment. I live just 45 minutes from their treatment facility. They offer a free, over the phone consultation, but you must fax them your biopsy results to get things started.

    ProstRcision
    http://www.youtube.com/watch?v=vRFeh5xXe-k