Hello just diagnosed and very frightened

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  • Steve1961
    Steve1961 Member Posts: 301
    Thanks Thanks

    thanks and sorry jusr kicking myself for skipping a year I would have been stage 1 rather than 2  that’s all thanks I will just pray that it was still contained .... that’s all I can do for now 

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    UCSF

    These guys are the experts....the middle name for each of the docs is "prostate"

    They will want to do their own T3 MRI; they will probably not accept the results from outside facilities, so wait until you speak with them....by the way ANY doc can order an MRI to include but not limited to a radiation oncologist.

    Sub Denis gave you very good advice. Take your time to research and don't operate out of fear and panic...........also, stop beating yourself, no more coulda, shoulda...

  • fishinguy
    fishinguy Member Posts: 18
    edited December 2017 #44
    Steve1961 said:

    Thanks Thanks

    thanks and sorry jusr kicking myself for skipping a year I would have been stage 1 rather than 2  that’s all thanks I will just pray that it was still contained .... that’s all I can do for now 

    Forget about the year

    You and I are tracking pretty much the same as what I've read from you.  I even skipped a year in my PSA screening.   I was born in 1961 as well.   PSA originaly high when I was 51, five years ago.   I most likely had my 3+4 for a couple years prior to that,   So 7 years I'm thinking at least.   I did have surgery, and my PCa was contained.  I tell you this because there is a good chance it is contained for you as well.  Also a 3T MRI eluded to that prior.    My MRI was prior to my biopsy, used to help locate it.   I'm not sure if the insurance companies care if the MRI is prior or post PCa detection.   Maybe others know, you should ask.

    Heed the advice of those here.   Take some time now to research your options and pick the one that's right for you after you have learned of them. Don't get too focused on surgery immediately.  Really look at options equally now.  It may seem like it's taking forever to make a decision, but when you look back in a year, a couple months to research will seem like a blink of an eye in retrospect.   Everything you are doing now is in a heightened state, you can slow it down.  Tell yourself over and over, "I will be fine".   Because you will be.

    Take care - Dan

  • Steve1961
    Steve1961 Member Posts: 301
    fishinguy said:

    Forget about the year

    You and I are tracking pretty much the same as what I've read from you.  I even skipped a year in my PSA screening.   I was born in 1961 as well.   PSA originaly high when I was 51, five years ago.   I most likely had my 3+4 for a couple years prior to that,   So 7 years I'm thinking at least.   I did have surgery, and my PCa was contained.  I tell you this because there is a good chance it is contained for you as well.  Also a 3T MRI eluded to that prior.    My MRI was prior to my biopsy, used to help locate it.   I'm not sure if the insurance companies care if the MRI is prior or post PCa detection.   Maybe others know, you should ask.

    Heed the advice of those here.   Take some time now to research your options and pick the one that's right for you after you have learned of them. Don't get too focused on surgery immediately.  Really look at options equally now.  It may seem like it's taking forever to make a decision, but when you look back in a year, a couple months to research will seem like a blink of an eye in retrospect.   Everything you are doing now is in a heightened state, you can slow it down.  Tell yourself over and over, "I will be fine".   Because you will be.

    Take care - Dan

    Thank u

    Thanks for the advice let’s have a virtual beer one night 

  • Grinder
    Grinder Member Posts: 487 Member
    Sympathies

    Welcome to the club no one wants to join. Similar to Max, I was dealing with a recurring Staph infection in my prostate. It was very large, like a hot soft giant blob in my business, and completely shut down my plumbing. There was no pain, which is why PC is a silent killer, you don't know you have it. The only sensation I felt, even when the prostate was at its largest, was a glowing heat emanating from the prostate into the surrounding nerve tissue... and typically accompanying UTI urethra pain. After a barrage of antibiotics, we got it down to 250cc during the biopsy, and with daily Flomax and Cialis, was able to keep the plumbing open enough to knock out a small stream. Further treatment got it down to 197cc by the time of my surgery. The biopsy was Gleason 6 3+3, and normally a candidate for AS. But, I was in danger of the Staph infection eventually becoming resistant to the antibiotics if I continued to try and keep the prostate size down to around 200cc by treating the recurring infection with the antibios over and over again.

    My point in all this is your prostate may seem big now at 55cc, but with BPH, PCa, acute or chronic prostatitis, pathogenic infection, or a combination of all these, 55cc may not be the maximum yet and you are only 56 years old, you may still have a lot of prostate fun and games ahead.

    So yes I had my prostate removed, but like the guys said, the PCa had not escaped the capsule and Gleason score was low. 

    But like they are saying, whether you and your doctor settle on the three types of treatment, MAKE SURE you get the best oncologist and/or robotic surgeon available. There are unfortunate cases on here that experienced side effects that others who had the same procedure did not, and if you read far enough back into the archives there is one element that the worst side effect cases usually have in common... an inexperienced oncologist or surgeon that struggled with the learning curve of the particular procedure. One patient had his colon burned by off target radiation and now has no bowel control, others have permanent incontinence from surgery. Not trying to scare you here, just trying to make sure you look out for your own best interest, and that means getting experienced professionals, not "the next guy up". Yes, everyone has to learn from the beginning, but why should you be their practice dummy.

    I myself had a great surgeon... But I went through 5 different urologists at different clinics. This particular surgeon was recommended to me by a friend, and he has many years of experience under his belt. My giant infected cancerous prostate was taken out, and I have not had a UTI since, the incontinence is about 95% better, and the ED is almost cured completely. BUT, in case no one mentioned this yet, if you do get the surgery, you will lose 1 to 2" of length. When the prostate is surgically removed, a corresponding section of your urethra goes with it, then the remaining is pulled up and reattached, causing your tool to retract an inch or two. If you were 6" before, you will be 4 -5" after surgery. In your case, only 50cc, you will probably only lose an inch. I

    Just some things I thought you should know.

  • Steve1961
    Steve1961 Member Posts: 301
    Ok how to,pick a surge

    best advice on picking a good surgeon honestly I am looking at either stanford or UCSF but there are other great places around .should I look at age I dint want someone real old and then again  what is too young .was looking at a guy he is only 37 but he is at Stanford for a good reason sooo draining but appreciate all the help

  • Steve1961
    Steve1961 Member Posts: 301
    edited December 2017 #48
    Urine flow

    Also I take it after surgery I guess urine flow becomes better slowly...my flow has been weak for about 5 years now just wondering

  • CC52
    CC52 Member Posts: 103 Member
    Steve... relax

    You've been here for one week. You have what appears to be a very low grade/low risk pca diagnosis. You haven't had any of the recommended tests to determine what else - if anything - may be going on. Many members have given you their opinions on your situation based on the info you have provided.  

    And now, here you are talking about surgery without giving yourself an opportunity to:

    1) Take a breath and reflect on the news that you have cancer. Have that glass of wine or a beer or two

    2) Give youself a chance to study your specific results and treatment options that would apply in your case

    3) Given your low grade and involvment - you should give serious consideration to Active Surveillence

    4) If you choose to get the cancer out - surgery would be last on my list. Radiation, specficically SBRT (Cyberknife) is what I and many others here have done, with great results

    5) Everyone here has had to make the decision that is right for them. You are no different, and if you believe surgey is best, then go for it.

     I remind you - ONE WEEK - that's all the time you have been here. And you are considering surgery? No way my friend!

     Have a beer instead. Study the forum, and take advantage of the knowledge and experince of everyone here to help you through the process. 

    There is no need to rush. Make an informed decision. You owe it to yourself and to those that love you and you love back. You may regret it if you don't. 

    Wishing the best outcome for you. 

    CC

     

     

     

  • Steve1961
    Steve1961 Member Posts: 301
    surgury

    yes oncologist recvommended surgury...he said at my age its better to take it out and be done with it..was told they reccomond radiation for older people late 60s 70s because the surgury at that age is kinda rough..gand usually its so slow growing radiation is better for them...anyway yes i have decided on ssurgury..just need tips on finding the right surgeon.. i was told he should have performed at least 500 of these  and read ever review  what else should i know about the surgeon...is robotic the wasyto go or is the old way good as well...thast all...just asking asking..like i said Stanford and UCSF are the places i will be most likely deciding on...hope i am not being a pest...hopefully i can return the favor when i am done  and help other feel comfortable like all of you guys thanks

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    steve.

    CC52 and others including myself are giving you good information, but you are in a rush to make a decision with lack of knowledge that you can regret for the rest of your life.

    I strongly recommend that you do your due diligence and visit with doctors in various specialties at UCSF

    Also like CC52 , surgery would be the very last treatment  I would choose, and that is only if they held me down.My first choice would be SBRT aka cyberknife. Here is something that I posted at another tread.

    "I have been in an Active Surveillance program since March 2009 during which time I have been monitored for disease progression which would indiciate active treatment if needed.

    In order  to make the best decision for a localized treatment for prostate cancer, if necessary, I did very extensive research to determine the success ,  along with the  frequency of  potential consequences of these treatments. My research includes reading  from this site since   April 2009 where I  read posts by men who suffered the consequences of surgery to include but not limited to incontinence and erectle dysfunction. These posts were and are frequent. There are ongoing threads at this site about incontinence from surgery, and the sub industy that developed to install the various AMS devices to correct this. Also for Erectile Dysfunction there are various devices that are installed so a man can have an erection

    During the last nine years of research, I attended local support groups where I met many men who suffered significant side effects from surgery; incontinence and erectile dysfunction. In addition, I observed that many men who were treated with surgery had to have salvage radiation and or hormone treatment since many of the surgeons in thier haste to do the surgery did not order proper diagnostic tests (image) before surgery, and these men had to suffer additional treatments with other potential consequences.

     

    I also read extensively on the subject to include but not limited to medical studies and books. Studies that I have read discussed the frequency of side effects from surgery which is great. Attended many lectures about treatment, where I heard from unbiased medical lecturers, such as world renown Medical Oncologist "Snuffy" Myers who were against surgery because of the severe consequences that men experience."

     

  • Steve1961
    Steve1961 Member Posts: 301
    Okay

    i will do that u r right I just need to calm down.in m6 head I am thinking that anytime it could go from stage 2 to 3 that’s why I am kinda in a hurry.but I will slow down a bit .get a t3 mri get results and ask about cybrtknufe and so on 

  • ASAdvocate
    ASAdvocate Member Posts: 180 Member
    edited December 2017 #53
    Steve, Hopeful and optimistic

    Steve, Hopeful and optimistic has given you very sound advice, and it is good to read that you are considering it. Also, here is an article by a highly respected prostate cancer blogger regarding age and active surveiilance.

    https://prostatecancerinfolink.net/2016/07/07/can-a-man-be-too-young-for-active-surveillance/

     

     

  • fishinguy
    fishinguy Member Posts: 18
    edited December 2017 #54
    Steve1961 said:

    Thank u

    Thanks for the advice let’s have a virtual beer one night 

    I'm in!

    Sure thing....

  • Grinder
    Grinder Member Posts: 487 Member
    One more thing

    ... Be sure to ask your doctor how CK will or will not affect severe BPH symptoms or chronic prostatitis. So far, I have not read in the archives anything about chronic prostatitis, BPH and CK treatments. I don't think, at first glance, that CK will help enlarged prostate symptoms at all, and the advocates of CK never mention having enlarged prostates to the point of health risk.

    Admittedly, 55cc is not terribly enlarged. But that isn't a constant you can rely on in the future. Family history? Did your father have serious BPH symptoms? What does your urologist say about your future potential for BPH? 

    If you get CK instead of RP, is daily Flomax in your future? A TURP procedure? I myself had all the options on the table and went with RP anyway.

    If you settle on CK or other RT, keep in mind that RP is then generally ruled out. You can follow Robotic Prostatectomy with radiation, but you generally cannot follow radiation with radical prostatectomy. Read into the archives for more info.

    If your doctor suggests you will not have severe BPH or chronic prostatitis in your future, then maybe CK is your best alternative. But don't let anyone scare you away from radical prostatectomy with an experienced Davinci Robotic surgeon, if there is danger of severe prostate enlargement and the accompanying urinary stricture and other health issues it creates.

    I could be wrong, but I am guessing the CK advocates here did not have to deal with severe prostate enlargement, which CK can not resolve, but could take prostatectomy off the table for future treatment alternatives.

    And Davinci Robotic nerve sparing prostatectomy is the way to go for any RP.

    And yes, you have plenty of time to decide on the best treatment for YOUR profile, not mine or anybody else's. Best to ignore the dire warnings and get every opinion possible.

  • Grinder
    Grinder Member Posts: 487 Member
    edited December 2017 #56
    More info

    "Robotic radiosurgery, also branded as CyberKnife Robotic Radiosurgery, is not robotic surgery. Developed by Accuray, a radiation oncology company, FDA-approved CyberKnife involves no cutting at all, but rather is radiation for the treatment of cancer. Through a series of 1-5 procedures on different days, the patient receives targeted radiation to the cancerous area. This is a minimally invasive procedure believed to limit the radiation exposure to the surrounding non-cancerous tissue through its precise ability to hone in on the cancerous prostate. A recent multi-center study of low-risk prostate cancer patients showed a 93 percent non-recurrence rate after 5 years, though the procedure is relatively new and data is limited.

    In Dr. Samadi’s opinion, this type of radiosurgery has two significant limitations. First, it relies on pre-surgery CT scan data to determine the size, shape and location of the tumor. “We just don’t learn enough from those pre-surgery scans,” stressed Dr. Samadi. “What we think is low-risk, very localized prostate cancer could be more invasive, and could therefore be missed by this type of treatment.” Further, Dr. Samadi clarifies, this is radiation and though the hope is that the cancer will never return, treatment options may be limited if it does. “It’s considerably more challenging to perform robotic prostatectomy surgery after radiation, so if the cancer comes back treatment options can be more limited.”

    During a robotic radical prostatectomy procedure, the surgeon uses finely controlled robotic tools consisting of high-resolution cameras and micro-surgical instruments to remove the cancerous prostate. Though minimally invasive, the surgeon is still able to clearly see the entire surgical field. Blood loss is minimal, vision is 3D and is enhanced 10x and the dexterity of the instruments allows an experienced surgeon to guide it in all directions with full rotation. For Dr. Samadi, robotics is the perfect blend of old and new. “I see robotic surgery as a great marriage of the benefits of traditional, open surgery and state-of-the-art technology,” said Dr. Samadi whose patients have a 97 percent cure rate. “Essentially, I can see and do everything I used to see with traditional surgery without risking the same traumas to the patient.”

    http://www.roboticoncology.com/press-release/cyberknife-and-robotic-prostate-surgery-the-winner/

  • Grinder
    Grinder Member Posts: 487 Member
    2011

    That quote was published six years ago, but I mention it because you generally cannot follow up radiation with RP, so it limits your alternatives.

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    SBRT and Prostate size

    After SBRT the prostate size shrinks in size due to atrophy. This was true of my friend who had SBRT five years ago. At that time his prostate was very large, if I remember correctly it was about 85cc. He is doing just fine now, and his pee stream is comparable to a fire hose stream.

    Now a days radiation is very precise and effective; there is no need to do radiation after surgery since radiation alone will do the job, there is no need for surgery which is only localized in addition to radiation, since men can incur significant side effects which are cummulative. The radiation perimeter, in cases where there is a chance that the cancer is  outside the capsule, can be extended. Eventhough surgery, although difficult, can be performed after radiation,there  is no need for surgery after radiation since there are other treatments such as hormone for failed radiation treatments. Radiation cure rates are comparable to surgery cure rates with less side effects.

    You quote Dr. Samadi's ( a urologist who is biased) of 5 years ago. At that time if my memory is working, Dr. Samadi and Dr. Katz who does SBRT (cyberknife delivery) worked in the same hospital in New York...I think that they did not, to say the least,  get along at that time.

  • Grinder
    Grinder Member Posts: 487 Member
    edited December 2017 #59
    Thanks

    Thank you hopeful for the information... Though I would still research it further to make sure your friend's case is typical, and not due to another variable.

    And yes, it is a old but I quoted it primarily in reference to the limitations of alternatives after CK. I am guessing CK has come a long way since the article was written as far as accurate targeting.

  • Grinder
    Grinder Member Posts: 487 Member

    I researched this in a limited way with keywords "CK shrinks prostate" and I can't find any other instance where CK effectively did shrink the prostate through atrophy. Yes, your friend's prostate may have shrunk, but if this were a common effect of CK, it seems like it would be heralded as a positive effect of CK technology. I strongly suggest it be researched further into the archives of other medical forums and university websites to see if it does have that effect, before anyone makes their treatment decision.

    If it did harmlessly shrink the prostate, then why isn't CK being used to address severe BPH symptoms regardless of cancer presence?

    In the case of RP, there is no question it resolves BPH and prostatitis issues.

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    Grinder said:

    Thanks

    Thank you hopeful for the information... Though I would still research it further to make sure your friend's case is typical, and not due to another variable.

    And yes, it is a old but I quoted it primarily in reference to the limitations of alternatives after CK. I am guessing CK has come a long way since the article was written as far as accurate targeting.

    actually

    When my friend and I interviewed doctors we interviewed  a robotic surgeon and a radiation oncologist who specialized in SBRT. Well the surgeon said that the prostate would not atrophy and surgery was necessary for better urinary function, while the radiaiton oncologist told us , that the prostate would atrophy. We did not know which doctor was accurate. Well, since my friend had heart disease, he opted to go with the radiation.

    Initially after the radiation, there was some swelling of the prostate which affected his ability to urinate. He was prescribe Flomax. After a while the prostate did atropy. so he does not have any problems with urination.

    The urologist that leds a local support group that I like to attend told me that radiaiton with larger prostates are not ideal. Quite often men receive hormone  in advance  of radiation treatment, that shrinks the prostate