Diagnosed with prostate cancer and worried!!!

John-Can
John-Can Member Posts: 13
edited May 2018 in Prostate Cancer #1

Dear all,

I was diagnosed with prostate cancer a few days ago and my urologist says, after introducing the results of the biopsy, that I need treatment. My last PSA was 5.76 and out of 12 cores, I have 6 cancerous cores. All are grade T2 and their Gleason scale score is 3+3=6. My urologist says all these cores are located on the right lobe of my prostate gland and they are confined to prostate gland. I requested a CT scan, MRI scan and bone scan to make sure that there is no spread, but the doctor says there is no need for MRI and bone scan and only CT scan is needed. I am extremely worried and confused because I don’t know what to choose for treatment, radical prostatectomy, radiotherapy (external beam, brachytherapy) or cryotherapy. Please help me, I want to hear your opinions. Any comment or advice will be highly appreciated.

 

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Comments

  • Grinder
    Grinder Member Posts: 487 Member
    good news

    First John, let me say you are one of the lucky ones if you caught the PC while still confined to the prostate gland.

    If you read some other recent posts, many guys did not catch the PC until it had escaped the capsule, or even metastasized. That greatly complicated their treatments and prognoses.

    If you read many of these other posts and threads, you will find quite a controversy raging between AS Active Surveillance, Radical Prostatectomy including Open, Robotic and Nerve Sparing, Radiation in various forms, External Beam Radiation, Brachytherapy, Sterotactic Body Radiation Therapy, Radioactive seed implants, and ?

    There are many treatment options available to you since you caught it early. I cannot speak for any of the other treatments except Davinci Robotic Nerve Sparing surgery in which incisions are cut into the abdomen and the robotic appendages remove the prostate. I was very successful for me, so of course I recommend it, but you may want to consult primarily with your doctor to determine which course of treatment you want to pursue... and also go back and read the many posts concerning treatment alternatives.

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    edited May 2018 #3
    Proper diagnositic tests

    I am sorry for your diagnosis.

    First, about the biopsy, please let us know what the involvemnt of each of the cores that were positive, that is, the percent of the each core that was found to be positive? Any othe information presented in the pathology. PSA history? Any other diagnostic tests?

    Your doctor is simply guessing when he says that the cancer did not escape the prostate. You will want a T3 MRI. This test can indicate if there is extracapsular extenstion, that is, if the cancer has escaped the prostate. The T3 MRI uses the most powerful magnet in clinical use and provides very good definition. The CT scan does not provide great definition.

    The American Urological Association does not recommend a bone scan for men who have Gleason under 8 since it is very very unlikely that it has metasized to the bone.

    You need to have a copy of all medical information pertaining to your case, so it will be available for discussion, and as you speak to various specialists.

    We are here for you.

     

     

  • MK1965
    MK1965 Member Posts: 230 Member
    Welcome

    Welcome to forum no one wants to join.

    From your post, you mentioned 6 of 12 positive cores with 3+3. Like H&O said, it would be good to know percentage in each core. If percentages are low then you really don’t  need to worry much.It is known that Gleson 6 does not metastasize so one less worry for you.

    If you decide for treatment, all options are open. Take time and do your own research. Surgery is not always best option for Gleson 6.

    You will hear all kind of input on surgery because this is heavily pro surgery forum. 

    I did not see your age but since you cought it early, I assuse you are in your early fifties.

    Take your time, no need to rush into anything.

    MK

  • John-Can
    John-Can Member Posts: 13
    Grinder said:

    good news

    First John, let me say you are one of the lucky ones if you caught the PC while still confined to the prostate gland.

    If you read some other recent posts, many guys did not catch the PC until it had escaped the capsule, or even metastasized. That greatly complicated their treatments and prognoses.

    If you read many of these other posts and threads, you will find quite a controversy raging between AS Active Surveillance, Radical Prostatectomy including Open, Robotic and Nerve Sparing, Radiation in various forms, External Beam Radiation, Brachytherapy, Sterotactic Body Radiation Therapy, Radioactive seed implants, and ?

    There are many treatment options available to you since you caught it early. I cannot speak for any of the other treatments except Davinci Robotic Nerve Sparing surgery in which incisions are cut into the abdomen and the robotic appendages remove the prostate. I was very successful for me, so of course I recommend it, but you may want to consult primarily with your doctor to determine which course of treatment you want to pursue... and also go back and read the many posts concerning treatment alternatives.

    Hi Grinder,

    Hi Grinder,

    Thank you so much for your reply. Actually I'm scared of AS and may choose robotic surgery after I discuss that with my doctor.

  • John-Can
    John-Can Member Posts: 13

    Proper diagnositic tests

    I am sorry for your diagnosis.

    First, about the biopsy, please let us know what the involvemnt of each of the cores that were positive, that is, the percent of the each core that was found to be positive? Any othe information presented in the pathology. PSA history? Any other diagnostic tests?

    Your doctor is simply guessing when he says that the cancer did not escape the prostate. You will want a T3 MRI. This test can indicate if there is extracapsular extenstion, that is, if the cancer has escaped the prostate. The T3 MRI uses the most powerful magnet in clinical use and provides very good definition. The CT scan does not provide great definition.

    The American Urological Association does not recommend a bone scan for men who have Gleason under 8 since it is very very unlikely that it has metasized to the bone.

    You need to have a copy of all medical information pertaining to your case, so it will be available for discussion, and as you speak to various specialists.

    We are here for you.

     

     

    Hi hopeful and opt,

    Hi hopeful and opt,

    Thank you so much for your reply. I did not get the biopsy report yet. I asked for a copy of the report and the hospital promised to send me one in a few weeks. So I have no ideal about the percentage of each positive core. My PSA was up and down since 2016 from 4.51 to 7.59 in January, 2018 then down to 5.76 in April 2018. I will ask my doctor for an MRI when I meet him next week.

  • John-Can
    John-Can Member Posts: 13
    MK1965 said:

    Welcome

    Welcome to forum no one wants to join.

    From your post, you mentioned 6 of 12 positive cores with 3+3. Like H&O said, it would be good to know percentage in each core. If percentages are low then you really don’t  need to worry much.It is known that Gleson 6 does not metastasize so one less worry for you.

    If you decide for treatment, all options are open. Take time and do your own research. Surgery is not always best option for Gleson 6.

    You will hear all kind of input on surgery because this is heavily pro surgery forum. 

    I did not see your age but since you cought it early, I assuse you are in your early fifties.

    Take your time, no need to rush into anything.

    MK

    Hi MK1965,

    Hi MK1965,

    Thank you so much for your input. I have no idea about the percentage of each positive core. I just asked the hospital to send me a copy of the biopsy report. I have already decided for treatment and may choose robotic surgery or radiation therapy. As for my age, I'm 67.

  • VascodaGama
    VascodaGama Member Posts: 3,495 Member
    Can you trust your doctor?

    John,

    I wonder why your doctor did discarded important and better image exams for prostate cancer, giving preferences to something that is at the bottom of the list of exams, regarding capabilities in identifying cancer. Surely a surgeon eager to operate would prefer to have negative image results. Either he is from the old guard or he is not aware of the newer recommendations/guidelines provided by urological associations around the world.

    CT is linked to many false negatives when diagnosing prostate cancer. PET scan is the latest and more specific in image exams and surely important in staging a PCa case. In your shoes I would give up the farce of a CT scan and go straight to the operating theater if you trust your doctor. Why bother with a scan if your mind is already set in a treatment as you comment to Grinder above. By norm, PCa patients receive firstly a clinical stage before deciding on a therapy.  

    You have not tell us your age, but I recommend you to research on the consequences of any treatment, their risks and side effects before engaging in anything. Young fellas with long life expectancy have lot to lose in quality living and old fellows may give preferences to palliative treatments. You should get second opinions (starting with the diagnosis data) and only decide after consulting your family. Do things coordinately and timely without rushing.

    Survivors in this forum can help you to understand the facts but you need to share mode details of your case.

    Best wishes and luck in your journey.

    VGama

  • lighterwood67
    lighterwood67 Member Posts: 321 Member
    Lots of choices

    First let me say you are still John.  You are the same John you were yesterday with the exception of that you know you have PC.  You will weigh out a lot of treatment options.  Take your time.  Write down questions that you have for your medical folks.  The final decision is yours.  A lot of folks base that on quality of life and treatment options.  All options have their side effects.  Pretty much you will read the stories on this site to see what side effects folks had.  There are success stories and horror stories.  No 2 PC's are alike.  Wish you the best of luck on your journey.  Stay positve and keep in touch with your human side.  Do not let all the options overwhelm you.  Sometimes you can analyze to paralyze.  Good luck.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member

    Lots of choices

    First let me say you are still John.  You are the same John you were yesterday with the exception of that you know you have PC.  You will weigh out a lot of treatment options.  Take your time.  Write down questions that you have for your medical folks.  The final decision is yours.  A lot of folks base that on quality of life and treatment options.  All options have their side effects.  Pretty much you will read the stories on this site to see what side effects folks had.  There are success stories and horror stories.  No 2 PC's are alike.  Wish you the best of luck on your journey.  Stay positve and keep in touch with your human side.  Do not let all the options overwhelm you.  Sometimes you can analyze to paralyze.  Good luck.

    Superb

    Welcome to you, John-Can.

    Lighterwoods put it so well. Prostate cancer (PCa) differs dramatically form most other cancers in having numerous treatment options. Many, perhaps most, other cancers have one preferred, first-line response. Lymphoma (which I have had) is like that: Treatment is chemo. Period. Chemo or nothing. Not a lot to discuss or talk about. And no arguments over side-effects. Live with the side-effects or die. Not complicated there either. Leukemia is the same way.  No arguments over radiation vs. surgery, or anything else.

    "Analyze to paralyze."  In other words, worry over options until you can't do anything. That is a keeper, lighterwood !  I have seen it happen to guys here more than once.  Or, they make a choice and then second-guess what they did for life. No peace in their hearts, ever.  Don't be those guys.

    Do your research, make a decision, and then go with it.  Often the best choice is simply the one that most fits you emotionally, the one that you just "feel good about."  And very often guys will state that they made a choice because of a doctor whom they liked, felt confident with.  It happens that at times the best surgeon or radiaton oncologist on earth is just a turd in personality. Only you can prioritize all of this and make it fit you and what you want.

    Do not let the microscopic, technincal stuff overwhelm you. There is never a perfect choice, and no one size fits all.  And none of this comes with a warranty, no guarantees.  But your results sound like you have minimal, incipient disease, that should be readily beatable.

    max

     

     

  • John-Can
    John-Can Member Posts: 13
    edited May 2018 #11
    Met radiotherapy oncologist

    Thanks a lot to everyone who answered.

    I met my radiotherapy oncologist today and we discussed the risks, advantages and disadvantages of radiotherapy. I wanted to make sure that the cancer has not spread outside my prostate. He performed DRE on me and said it is impossible for a G6, PSA 5.7 cancer to have extra capsular extension. I asked for an MRI to confirm his opinion, but he said there is no need for that. He said my cancer is T2a. As for my N and M grades, he said the biopsy report doesn’t show that, but we don’t need it at this time. I also asked him about the effect of radiotherapy on cells and tissues (prostate, bladder, urethra, semen vesicle) and he said radiation stops cell division and I wonder when a cancer cell stops dividing and eventually dies, it is ok, but what about normal cells and what may happen if they all die?

     

    I’m also not sure if an oncologist can decide that my prostate cancer is T2a by just performing DRE?

    Is an MRI really NOT unnecessary for me at this time?

    Best wishes for all.

  • VascodaGama
    VascodaGama Member Posts: 3,495 Member
    Dubious response

    If what you write is what the radiologist told you then he is not to be relied upon. I think this guy to be in the same group of your urologist trying to convince you that a proper image study is unnecessary. A DRE does not diagnose cancer whatever grade such could be and the biopsy diagnoses cancer with a grade, that in your case was Gleason score 6 (3+3). The T2a element is the clinical stage which is just a guess imagined by your urologist. If your doctor doesn't believe that such stage should be verified with added information from an image study then, in my opinion you should not trust him.

    Can you tell us your age and about any other experienced or existing illness?

    Your comments are dubious and the responses reinforce the idea that you should go to navigate in other waters. I recommend you to get second opinions from another group of urologists. I am sure that an independent radiologist would not answer with the same negative wording that the one above did.  

    Best,

    VG 

  • Clevelandguy
    Clevelandguy Member Posts: 751 Member
    Which to choose

    Hi John-Can,

    From what I have read so far if I were you I would consult with a completely different set of doctors and hospitals for a second opinion. I feel the MRI is a good choice for helping pinpoint the location of your cancer(is it near the edge or barried deep inside) which could tell you how soon you need to do something.  Good info from a lot of the people above.

    Surgery or some form of radiation are two of the most common treaments and yes they all do have their side effects/damage after the treament.  The American Cancer Society has some very good info on their website about the various treatments and their resultant side effects.  Also go to the manufactures website of the various radiation and surgery machines and check them out.

    A lot of info the digest but if it is 3+3 you have some time to study and research.  Pick the best doctors and hospital facilites you can afford as I feel that choice does affect the life long outcome of any procedure.  Let us know if we can help with more info once you narrow down your search a little.

    Dave3+4

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    John-Can said:

    Met radiotherapy oncologist

    Thanks a lot to everyone who answered.

    I met my radiotherapy oncologist today and we discussed the risks, advantages and disadvantages of radiotherapy. I wanted to make sure that the cancer has not spread outside my prostate. He performed DRE on me and said it is impossible for a G6, PSA 5.7 cancer to have extra capsular extension. I asked for an MRI to confirm his opinion, but he said there is no need for that. He said my cancer is T2a. As for my N and M grades, he said the biopsy report doesn’t show that, but we don’t need it at this time. I also asked him about the effect of radiotherapy on cells and tissues (prostate, bladder, urethra, semen vesicle) and he said radiation stops cell division and I wonder when a cancer cell stops dividing and eventually dies, it is ok, but what about normal cells and what may happen if they all die?

     

    I’m also not sure if an oncologist can decide that my prostate cancer is T2a by just performing DRE?

    Is an MRI really NOT unnecessary for me at this time?

    Best wishes for all.

    Correct

    John-Can I agree with V and Cleve that your most recent doctor (the R.O.) used part facts, part a bit of bluster or overstatement.

    It is not a clinical dogma that Gleason 6 "cannot have escaped the gland."  But it is profoundly uncommon for such to occur. What the doctor undoubtedly meant was that it was virtually impossible, not literally impossible.  A DRE only yields results for the condition of about half of the gland, and says nothing about the other half. But be aware, we read about virtually impossible stuff here all the time.

    The doctor establishing Staging on no more than a biopsy and DRE is also a bit presumptous, due to the many false negatives that 12 core biopsies yield.  It is an educated guess, and probably reasonable, but not certain.

    After IMRT or SBRT, the gland is in effect charcoal...my R.O. told me that himself.  This is harmless to the body, assuming all of the disease is killed, but there remains slight (uncommon) prospect of urinary stricture (constricted flow ability) later on.  But even if stricture occured, it is treatable after radiation.  Healthy tissue that is irradiated is simply killed like the cancer cells. But current radiation technology is extremely precise, and usually effective in avoiding any significant amount of healthy tissue.  Decades ago, this was not so, and colon and bladder damage was more common then than now.

    So, what the two doctors have told you thus far is fairly mainstream, although some doctors would demand the further scanning the others have recommended.  My potential Radiation Oncologist (the head of the RO department), my surgeon (who did my RP), and an independent medical oncologist (the man who treated me for lymphoma) all told me that MRI, bone scan, and CT were not probably necessary in my case, but they knew I was going to choose a first-line therapy within weeks.  The RO and surgeon in fact told my wife and I that "they would not do further scanning prior to treatment."  One issue involved here is that PSA 6 suggest so little cancer that the tumors, IF outside the gland, would NOT be detectable by most scanning technologies currently in use.  So, the situation as to what to do is a bit murky.

    My Gleason, like yours, was 6 also, and my PSI never got above around 4.4. I showled 5% volume, and only in one core.   But the pathology report following surgical removal showed that what was believed by all of them to be Stage I disease was actually a significant case of Stage II.  I know, "more murk."

    max

  • John-Can
    John-Can Member Posts: 13

    Dubious response

    If what you write is what the radiologist told you then he is not to be relied upon. I think this guy to be in the same group of your urologist trying to convince you that a proper image study is unnecessary. A DRE does not diagnose cancer whatever grade such could be and the biopsy diagnoses cancer with a grade, that in your case was Gleason score 6 (3+3). The T2a element is the clinical stage which is just a guess imagined by your urologist. If your doctor doesn't believe that such stage should be verified with added information from an image study then, in my opinion you should not trust him.

    Can you tell us your age and about any other experienced or existing illness?

    Your comments are dubious and the responses reinforce the idea that you should go to navigate in other waters. I recommend you to get second opinions from another group of urologists. I am sure that an independent radiologist would not answer with the same negative wording that the one above did.  

    Best,

    VG 

    Hi VG,

    Hi VG,

    Yes the RO told me exactly what I wrote in my previous post. Furthermore he told me "I guarantee that you will live at least 15 years even if you go and live in a jungle (he means without any medical intervention). I'm 67 y/o. and healthy otherwise. I will sure seek a second opinion and will ask him for MRI and other imaging tests.

    Thank you so much for your imput.

  • Bill B
    Bill B Member Posts: 1
    get informed before Eligard

    My Name is Bill. I was Dx with advanced agressive prostate cancer three years ago. 3 months of radiation treatment and Eligard. suicide attempt twice. Eligard has destroyed my entire life. Not only 100 % impotent. Constant suicidal along with other things. If you are with the VA. Run!! They dont want to hear about things like that. Viagra will not help and neither do the injections. You will be left as a empty shell of what you were before. Your Brain is never the same! they will tell you it will come back. From extensive reading most research tells you that is not true. For most men you will never be the same. I am alive for now but not living.

    If just being alive is more important then living get the Eligard. 5 years ago I was at the top of Mt. Everest now Im lucky to be able to run around the block.

    Good luck and get informed. Dont let the medical Team decide what is best for you. For me im no longer living I am just alive.

    Bill B

  • Grinder
    Grinder Member Posts: 487 Member
    cell division

    ". I also asked him about the effect of radiotherapy on cells and tissues (prostate, bladder, urethra, semen vesicle) and he said radiation stops cell division and I wonder when a cancer cell stops dividing and eventually dies, it is ok, but what about normal cells and what may happen if they all die?"

    John...

     That is the good thing about both radiation and Prostatectomy. The means of targeting radiation has vastly improved so targeting the prostate cells with mutated DNA is far more precise so "collateral damage" to normal cells and neaby tissues is greatly reduced than in times past. Similarly, nerve sparing Davinci surgery also targets only prostate for removal, sparing surrounding nerve bundles and tissues , unless migration of cancerous prostate cells have escaped the capsule and migrated into surrounding tissues. That's why it is essential to know whether the abnormal mutated cell growth is confined to the gland. 

    Like Max mentioned, prostate cancer can be easily targeted, unlike other forms of cancer and treatments that cannot distinguish between healthy cells and cancerous cells, and end up killing both normal cells and mutated cells... like chemotherapy.

    I think what your doctor may be conveying is the danger of cancerous cells lays in their reproduction, not in their individual existence. 

    A normal healthy cell replicates and dies at a regulated rate. Some cells live a long time, some are programmed with very short life spans. This regulated cell death rate is called apoptosis.  However, cancerous cells with mutated DNA are not programmed to die at the regulated rate of apoptosis. They stick around and keep replicating... more cancerous  cells. And so a mass of unregulated cells forms. Since prostatr cells grow, replicate, and die at such a slower rate than other orgsn cells, most men have SOME cancerous cells in their prostate and never know it in their lifetimes.

    But what if some of those unregulated cells escape the capsule? they can start reproducing more mutated prostate cells in the nerve bundles, the surrounding tissues, etc. 

    Cancer cells dont "attack" other cells like a virus does. .. it crowds them out. If a mutated prostate cell  metastisizes, what Vasco calls "the bandit" , it could ride the bloodstream to any part of your body. If it invades bone tissue, it will multiply more unregulated prostate cells,  growing prostate tissue in  your bone or  marrow... that becomes a serious and painful problem. Same with invasion of any other tissue or organs. 

    But, prostate cells are also famous for inactivity, unless stimulated by androgens in testosterone. Testosterone is the body's way of "waking up"  the reproductive system, such as  prostate cell activity.  So ADT deprives the bandits of stimulation in hopes of keeping them dormant, since the real danger of a single mutated prostate cell is its muliplication in unrelated tissues, such as bone, or other organs, where their growth by replication will interfere with normal organ function.

    So  when does a cancerous cell finally die on its own? Maybe someonevelse can answer that... I dont know. It may atrophy from inactivity. Your immune system may recognize its proteins as foreign and attack it. Or the bandits ' location may be discovered and targeted with radiation.

    Now you see why it is so important to discover whether the cancerous cells are near the margins of your prostate gland, or if they are deeply buried and confined to the gland.  And why a DRE that cannot detect growing cell colonies of prostate cells that  replicate without dying is insufficient since it cannot access the far side of the gland, which I did not know until Max pointed it out.

     The confinement to the capsule is absolutely essential in deciding what course of treatment you take. That is why, if it is  totally confined, you are very fortunate because all treatment methods are available.

     

  • Grinder
    Grinder Member Posts: 487 Member
    Bill B said:

    get informed before Eligard

    My Name is Bill. I was Dx with advanced agressive prostate cancer three years ago. 3 months of radiation treatment and Eligard. suicide attempt twice. Eligard has destroyed my entire life. Not only 100 % impotent. Constant suicidal along with other things. If you are with the VA. Run!! They dont want to hear about things like that. Viagra will not help and neither do the injections. You will be left as a empty shell of what you were before. Your Brain is never the same! they will tell you it will come back. From extensive reading most research tells you that is not true. For most men you will never be the same. I am alive for now but not living.

    If just being alive is more important then living get the Eligard. 5 years ago I was at the top of Mt. Everest now Im lucky to be able to run around the block.

    Good luck and get informed. Dont let the medical Team decide what is best for you. For me im no longer living I am just alive.

    Bill B

    Eligard

    Bill... The more you can elaborate the better. Eligard I am guessing is an Androgen Deprivation Therapy that suppresses the production of testosterone thereby depriving prostate cells of androgen to stimulate activity.

    What went wrong? Side effects? Dosages? Improper diagnosis or administration? 

    I feel terrible for you if you are suffering for it, and it would help to pinpoint the cause so the more expert members can give you advice, and perhaps warn others to avoid similar circumstances.

  • RobLee
    RobLee Member Posts: 269 Member
    Bill B said:

    get informed before Eligard

    My Name is Bill. I was Dx with advanced agressive prostate cancer three years ago. 3 months of radiation treatment and Eligard. suicide attempt twice. Eligard has destroyed my entire life. Not only 100 % impotent. Constant suicidal along with other things. If you are with the VA. Run!! They dont want to hear about things like that. Viagra will not help and neither do the injections. You will be left as a empty shell of what you were before. Your Brain is never the same! they will tell you it will come back. From extensive reading most research tells you that is not true. For most men you will never be the same. I am alive for now but not living.

    If just being alive is more important then living get the Eligard. 5 years ago I was at the top of Mt. Everest now Im lucky to be able to run around the block.

    Good luck and get informed. Dont let the medical Team decide what is best for you. For me im no longer living I am just alive.

    Bill B

    Bill, I'm sorry to hear of your sad situation

    I was diagnosed two years ago, had a prostatectomy that left me totally incontinent and have been on Leuprolide injections ever since.  Yes, there are some very troubling side effects.  Zero libido, zero interest in anything sexual.  And the brain fog seems to get continually worse. My doctor has informed me that these will improve eventually but will never be the same as before.

    I'm wondering if you are a combat veteran, which may have predisposed you toward your suicide attempts?  And are you on any antidepressant?  I know tha VA is not the greatest place to be treated especially in the area of mental health.  But whenever I call the VA the first thing they ask is if I am having thoughts of suicide.  So you are certainly not alone in your situation.

    I too had radiation in August thru October last year because the cancer had spread, and I have been told that they won't know if all of this has actually worked until probably 2020... about another year and a half away.  I have no energy and everything seems like it's a struggle, so yeah, I kind of get what you're feeling.  But suicide is not the answer.  If you could tell us about the stage of your cancer then we could maybe offer more guidance.

    Whatever is going on in your head, please realize that there are thousands of other men who are far worse off than you are.  I know that doesn't help, but as I said, just to let you know that you are not alone in your struggles.  I hope you come back and participate in the forum. Also there is a live chatroom here... it's in the pink box at the top left of your screen.  There are several other PCa fighters who are regulars there. People come and go all day, so if the chatroom is empty try again later. It gets very busy around 10PM eastern. Good luck Bill.

  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member
    My Sticky

    OP: Here's my long standing "sticky" on the available choice that I post for men newly diagnosed w/PCa. 

    Started posting this message over a year ago and my opinion has not changed.  It mainly addresses the choice between surgery and radiation but does not deal w/cyro.  So, I'll just add that, if ED is a concern of yours, cyro is even worse than surgery in terms of the potential risks.  Every doctor I spoke w/about it told me that you are almost 100% certain to become impotent after treatment w/cyro and the probably of success would be no greater than that achieved w/surgery or radiation. 

    In any event, here's my recommendation as far as the primary choices for treatment available to you.

     





    Anyone newly diagnosed with prostate cancer rated Gleason 6 (and usually Gleason 7) has all treatment options available to him and, since this cncer is considered "low risk", he has time to decide which choice is best for him.  So, the first thing a new prostate cancer patient should do is to do research on the available options before he actually has to make the decision regarding which treatment to choose.

    The following is my response to other men who asked for similiar advice about the treatment choices avilable to them.  It's a summary of the available treatment options and my personal opinion on the matter.   You can, of course, ignore my opinion about which treatment choice I think is best.  The overview of the choices is still otherwise valid.

     . . .  People here know me as an outspoken advocate for CK and against surgery of any kind.  I was treated w/CK [8] years ago (Gleason 6 and PSA less than 10).  You can troll the forum for my many comments on this point.  Here are the highlights of the treatment options that you need to consider:

    1)  CK (SBRT) currently is the most precise method of delivering radiation externally to treat prostate cancer.  Accuracy at the sub-mm level  in 360 degrees and can also account for organ/body movement on the fly during treatment.  Nothing is better.  Accuracy minimizes the risk of collateral tissue damage to almost nil, which means almost no risk of ED, incontinence and bleeding.  Treatment is given in 3-4 doses w/in a week time w/no need to take off time from work or other activities.

     2) IMRT is the most common form of external radiation now used.  Available everythere.  Much better accuracy than before but no where near as good as CK.  So, it comes with a slightly higher risk of collateral tissue damage resulting in ED, incontienence and bleeding.  Unless things have changed, IMRT treatment generally requires 40 treatments -- 5 days a week for 8 weeks -- to be completed.  I think some treatment protocols have been reduce to only 20 but I'm not sure.  Still much longer and more disruptive to your life than CK but, if CK is not available, you may have no other choice.

     3) BT (brachytherapy).  There are 2 types: high dose rate (HDR) and low dose rate (LDR).  HDR involves the temporary placement of rradioactive seeds in the prostate.  CK was modeled on HDR BT.  LDR involves the permanent placement of radioactive seens in the prostate.  1/2 life of the seeds in 1 year during which time you should not be in close contact w/pregnant women, infants and young children.  The seeds can set off metal/radiation detectors and you need to carry an ID card which explains why you've got all of the metal in your body and why you're radioactive.  Between HDR and LDR, HDR is the better choice because with LDR, the seeds can move or be expelled from the body.  Movement of the seeds can cause side effects due to excess radiation moving to where it shouldn't be causing collateral tissue damage -- ED, incontinence, bleeding, etc.   Both HDR and LDR require a precise plan for the placement of the seeds which is done manually.  If the seeds are placed improperly or move, it will reduce the effectiveness of the treatment and can cause collateral tissue damage and side effects.  An overnight stay in the hospital is required for both.  A catheter is inserted in your urethra so that you can pee.  You have to go back to have it removed and they won't let you go until you can pee on your own after it's removed.

     4) Surgery -- robotic or open.   Surgery provides the same potential for cure as radiation (CK, IMRT or BT) but which MUCH GREATER risks of side effects than any method of radiation.  Temporary ED and incontinence are common for anywhere from 3-12 months BUT also sometimes permanently, which would require the implantation of an AUS (artificial urinary sphincter) to control urination and a penile implant to simulate an erection to permit penetration (but would not restore ejaculative function).  Removal of the prostate by surgery will also cause a retraction of the penile shaft about 1-2" into the body  due to the remove of the prostate which sits between the interior end of the penis and the bladder.  Doctors almost NEVER tell prospective PCa surgical patients about this.  A urologist actually had the to nerve to tell me it didn't even happen when I asked about it.   Don't trust any urologist/surgeon who tells you otherwise.  Between open and robotic, open is much better in terms of avoiding unintended tissue cutting/damage and detection of the spread of the cancer.  Robotic requires much more skill and training to perform well; the more procedures a doctor has done the better but unintended injuries can still occur and cancer can be missed because the doctor has to look thru a camera to perform the surgery which obstructs his/her field of vision.

     4) You may also want to consder active surveillance (AS), which is considered a form of treatment without actually treating the cancer.  You just have to get regular PSA testing (usually quarterly) and biopsies (every 1-2 years, I believe) and keep an eye out for any acceleration in the growth of the cancer.  Hopeful and Optimistic (who has already posted above) has already mentioned this and is your best source of info on this forum about it. 

     I personally could not live w/the need to constantly monitor the cancer in my body.  Like most other men, I just wanted it delt with.  Some men gravitate to surgery for this reason, thinking that the only way to be rid of it is to cut it out, but I did not like the risks presents by surgery and opted for CK, which is a choice I have NEVER regretted.  I am cancer free, there is no indication of remission, there were no side effects and my quality of life was never adversely affected.  Other men on this forum have reported similiar results.

     So, for obvious reasons, I highly recommend that you consder CK as your choice of treatment.  The choice seems obvious when you consider the alternatives but you'll have to decide that for yourself.

     Good luck!




     

     

  • RobLee
    RobLee Member Posts: 269 Member
    Not eligible for cyberknife

    I was told by several RO's that I was not eligible for cyberknife due to my high PSA and high Gleason score.

    Has anyone else encountered this?