Need your opinions on best treatment options.

Lewkz
Lewkz Member Posts: 2
I am a fairly healthy 53 year old male that was diagnosed with PCa and here is the pathology report.

My urologist recommended I read "Prostate Cancer for Dummies" before seeing him last week
and told me to take a week before deciding which treatment option to choose. If I choose surgery, he would refer me to one of the Kaiser surgeons who performs laparascopy. My other option was radiation. After reading the book and talking with my urologist, my wife and I chose surgery. Tonight I happened to come across this site and read some of the discussions and I am having some doubts if I/we are making the right decision.

Your input is greatly appreciated.

Collected: 7/17/2012 Case #: xxxx-xxxx
Surgical Pathology Report
FINAL PATHOLOGIC DIAGNOSIS
A. PROSTATE, RIGHT APEX, NEEDLE BIOPSY:
-ADENOCARCINOMA, GLEASON 3+3 = SCORE OF 6, INVOLVING 1 OF 2
CORES AND <5% OF BIOPSY TISSUE

B. PROSTATE, RIGHT MID, NEEDLE BIOPSY:
-ATYPICAL SMALL ACINAR PROLIFERATION

C. PROSTATE, RIGHT BASE, NEEDLE BIOPSY:
-ATYPICAL SMALL ACINAR PROLIFERATION

D. PROSTATE, LEFT APEX, NEEDLE BIOPSY:
-BENIGN PROSTATIC TISSUE

E. PROSTATE, LEFT MID, NEEDLE BIOPSY:
-ADENOCARCINOMA, GLEASON 3+4 = SCORE OF 7, INVOLVING 1 OF 2
CORES AND 40% OF BIOPSY TISSUE

F. PROSTATE, LEFT BASE, NEEDLE BIOPSY:
-BENIGN PROSTATIC TISSUE

JI LU M.D.
** Report Electronically Signed by JL **
Comment
B. and C. Although the findings in the right mid and right base are
atypical and suspicious for adenocarcinoma, there is insufficient
cytologic and/or architectural atypia to establish a definitive
diagnosis in these locations. Definitive adenocarcinoma is seen in
the right apex and left mid biopsies.

This case has been reviewed in intradepartmental consultation by
another pathologist, who agrees with the diagnosis.

Microscopic Description
PARAFFIN IMMUNOHISTOCHEMISTRY:
(Block A1)

Prostate triple stain - negative for basal cells

Interpretation: The paraffin immunohistochemistry shows support for
adenocarcinoma.

(Block C1)

Prostate triple staining focally negative for basal cells

Interpretation: The paraffin immunohistochemistry shows support for
atypical small acinar proliferation.

[DISCLAIMER: This immunoperoxidase stain/panel was developed and
its performance characteristics determined by the Kaiser Regional
Immunohistochemistry Laboratory/The Permanente Medical Group, Inc.,
Northern California. It has not been cleared or approved by the
U.S. Food and Drug Administration (FDA). The FDA has determined
that such clearance or approval is not necessary. This test is used
for clinical purposes. It should not be regarded as investigational
or for research. This laboratory is certified under the Clinical
Laboratory Improvement Amendments of 1988 (CLIA-88) as qualified to
perform high complexity clinical laboratory testing. Positive and
negative control studies were evaluated and stained appropriately.
]

Clinical History
DIAGNOSIS / CLINICAL IMPRESSION:
Elevated psa, prior biopsy with atypical glands
Number of Containers->6
Collection date:_____________->Collection time:_____________

Gross Description
The specimen is received in 6 parts all in formalin, labeled with
the patient's name, and medical record number. The specimen is
additionally labeled as follows:

Part A is received designated "right apex," and consists of 2
friable, pale tan, cylindrical soft tissue cores measuring 0.4 and
1.2 cm in length and by less than 0.1 cm in diameter. The specimen
is entirely submitted in cassette A1.

Part B is received designated "right mid," and consists of 2
friable, pale tan, cylindrical soft tissue cores measuring 0.9 and
1.5 cm in length and by less than 0.1 cm in diameter. The specimen
is entirely submitted in cassette B1.

Part C is received designated "right base," and consists of 2
friable, pale tan, cylindrical soft tissue cores measuring 0.7 and
1.3 cm in length and by less than 0.1 cm in diameter. The specimen
is entirely submitted in cassette C1.

Part D is received designated "left apex," and consists of multiple
friable, pale tan, cylindrical soft tissue cores measuring from
0.2-0.9 cm in length and by less than 0.1 cm in diameter. The
specimen is entirely submitted in cassette D1.

Part E is received designated "left mid", and consists of 2
friable, pale tan, cylindrical soft tissue cores measuring 0.7 and
0.9 cm in length and by less than 0.1 cm in diameter. The specimen
is entirely submitted in cassette E1.

Part F is received designated "left base", and consists of 2
friable, pale tan, cylindrical soft tissue cores measuring 1.3 and
1.6 cm in length and by less than 0.1 cm in diameter. The specimen
is entirely submitted in cassette F1. (oj)

oxj/7/18/2012
Specimen(s) Received
A: PROSTATE NEEDLE BX - RIGHT APEX
B: PROSTATE NEEDLE BX - RIGHT MID
C: PROSTATE NEEDLE BX - RIGHT BASE
D: PROSTATE NEEDLE BX - LEFT APEX
E: PROSTATE NEEDLE BX - LEFT MID
F: PROSTATE NEEDLE BX - LEFT BASE

Patient Name: XXXXX,XXXXX
Med. Rec #:xxxxxxxx (Age: 53) Sex: M
Facility: KAISER
Location: UROLOGY


PSA 6.7 06/11/2012
PSA 5.2 04/05/2011
PSA 4.4 11/16/2010

Comments

  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member
    Limited Choices Available At Kaiser
    Lewkz: Sorry that you've been forced to join the PCa (prostate cancer) club. I hope that I and other members here can be of some help to you.

    Kaiser offers very limited choices for treatment of PCa and I was previously a Kaiser member who chose to leave Kaiser in order to obtain the treatment of my choice.

    You received a mixed biopsy result of Gleason 6 and 7 in different parts of your prostate, which indicates that the cancer may be more widespread w/in the prostate but your relatively low PSA scores suggests that the current risk of spread/growth of the cancer is still at an "early stage" which is amenable to various therapies.

    Unfortunately, with Kaiser, the choices for the treatment of early stage PCa are quite limited. You basically have a choice of between surgery, radiation (brachytherapy) and active surveillance.

    I am NOT a fan of surgery. Many men have undergone surgery without any significant adverse long term effects. However, many other men have reported very serious side effects following surgery, including permanent ED and incontinence problems that have required further surgery requiring a penile implant and/or the insertion of an artificial urinary sphincter.

    You can read a candid account of the risks of surgery written by a physician here: http://www.hifurx.com/prostate-cancer/prostate-cancer-after-effects.

    If you decide not to go w/surgery, Kaiser NorCal has a low dose rate (LDR) brachytherapy (BT) treatment center located in Roseville, CA. I believe there is another such center located in SoCal but I'm not sure where.

    In order to receive BT at Kaiser, you 1st have to attend their BT group orientation program which lasts a couple of hours. This basically satisfies Kaisers "informed consent" requirement prior to treatment. Kaiser reports very high success rates in its program for men w/early stage PCa. If you choose LDR BT, you will then need to have the size of your prostate measured and then get an MRI and/or CT scan to determine the approximate location of the cancer within the prostate so that the seed placement pattern (location of the seeds and radiation strength) can be determined.

    Compared w/surgery, there is a lesser but still relatively significant risk of ED and incontinence with LDR BT, as well as potential radiation damage to non-cancerous tissues from misplaced radiation seeds due largely to mistakes in the seed placement pattern and/or movement of the seeds (which is less common now than previously).

    If you are considering BT for treatment, ask your urologist if Kasier will treat you with HDR (high dose rate) BT instead. I wasn't aware of HDR BT before I chose to leave Kaiser and do not know if they offer it or not for the treatment of PCa.

    The main difference between LDR BT and HDR BT is that with LDR BT radioactive seeds (the number of seeds typically varies between 70-150) are placed in your prostate permanently, while with HDR BT, the seeds are higher dose and only placed in your prostate for a day and then removed.

    If you choose LDR BT, you will always needs to address when you board an airplane or go through any metal detector sensitive enough to pick them up. You will also be radioactive for about a year (the 1/2 life of the seeds), which may also cause you problems at airports and other locations where there are radiation detectors in place. You will have to carry a special ID card verifying your treatment by LDR BT to avoid the problems w/law enforcement officers if your radioactivity is detected. Not an insignificant problem these days.

    I do not know if Kaiser has an organized "active surveillance" (AS) program but my urologist did suggest that I could just "wait and see" if my Gleason 6 PCa got worse or not by simply "not doing anything" and just getting quarterly PSA tests done to monitor my PSA level. However, an active surveillance "program" really involves more than that.

    There are AS programs offered by other health organizations -- most notably medical schools like UCSF, Johns Hopkins, etc -- where patients are monitored and tracked closely. This usually involves an annual biopsy, quarterly or semiannual PSA tests and annual DREs.
    See for example: http://urology.jhu.edu/prostate/advice1.php.

    An AS program can also involve nutritional changes as well. See, the following link for a paper on Nutrition and Prostate Cancer prepared at UCSF: http://cancer.ucsf.edu/_docs/crc/nutrition_prostate.pdf.

    Ask your urologist if Kaiser has an organized AS program now to see if that's something you may want to join before choosing a specific treatment.

    Apart from surgery, BT and AS, there are a number of different methods of external beam radiation (EBRT) delivery for PCa that have been developed. These methods were NEVER offered or discussed with me at Kaiser. They go by various acronyms including SBRT (stereotactic body radiation therapy), PBT (proton beam radiation therapy) 3DCRT (3D conformal radiation therapy), IMRT (intensity modulated radiation therapy) and IGRT (image guided radiation therapy) and have all been developed in the last 5-10 years in order to address the problems of using unfocused EBRT in the treatment of PCa.

    The benefit of these methods is that they are designed to be more highly focused and accurate in the delivery of radiation than either LDR BT or HDR BT are and, as a result, cause fewer side effects/treatment problems.

    I chose CyberKnife (CK), which is a form of SBRT for my treatment. CK is available at Kaiser BUT NOT for PCa. Kaiser limits its use of CK to those cancers which they consider otherwise untreatable by surgery or other methodologies. In Kaiser's case, they think that offering surgery and BT is enough, even though CK offers significant advantages for the patient and reduced cost as compared with surgery and BT, because Kaiser has a huge investment in staff and equipment in continuing to just offer surgery and BT instead.

    After I learned that CK was available at UCSF, I made the decision to leave Kaiser because I determined that CK offered me the best chance of eliminating the cancer WITHOUT the significant risks of side effects from surgery or LDR BT. AS was also an option but my feeling was, if there was a method of treatment available that I could choose without risking significant sides effect,that I should take it. CK allowed me to make that choice.

    IMHO, CK is currently the most accurate method of radiation delivery available. The technology allows delivery of radiation to the prostate with extreme accuracy (sub mm) which substantially reduces the risk of damaging non-cancerous tissue which (with other methods) can lead to ED, incontinence and other radiation related problems. The technolog is so accurate that it can actually correct/adjust for body and ORGAN movement during treatment, so that the radiation is NOT delivered improperly.

    I suffered absolutely NO significant side effects following my treatment w/CK 2 years ago this coming month. My PSA level has not dropped as much as it has for other CK patients but there is no indication yet that the treatment has failed.

    For more information in CK, you can go to the Patient Forum of Accuray (the mfg of CK) here: http://cyberknife.com/forum.aspx?g=topics&f=2586.

    I also suggest that you view the following video, which gives a good overview of CK as compared with other treatment methods: http://link.brightcove.com/services/player/bcpid1311218266001?bckey=AQ~~,AAABMTO41yk~,0BDF4jnPRYk18rLHqrcfnGVhJxC-Y8Rm&bctid=1349680876001

    This is obviously a lot of information for you to take in but unfortunately with PCa, the patient is the one who has to do the work in order to sift through all of the choices available. No one else can do it for you. Each specialist will tend to promote the treatment that they use and know best, but that is NOT necessarily the BEST treatment choice for you.

    Even though you have a Gleason 7 diagnosis, you have and need to take the time to consider ALL of the choices available to you.

    I think I've given you a fairly comprehensive overview of those choices. Google all of them and learn what you can about them. Then ask your urologist whether anything other than surgery, BT and AS are currently available at Kaiser and, depending on which method you'd prefer, you'll have to decide whether the options available to you at Kaiser are sufficient or whether (like I did) decide to go elsewhere for the treatment you want/need.

    Good luck!
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member

    Limited Choices Available At Kaiser
    Lewkz: Sorry that you've been forced to join the PCa (prostate cancer) club. I hope that I and other members here can be of some help to you.

    Kaiser offers very limited choices for treatment of PCa and I was previously a Kaiser member who chose to leave Kaiser in order to obtain the treatment of my choice.

    You received a mixed biopsy result of Gleason 6 and 7 in different parts of your prostate, which indicates that the cancer may be more widespread w/in the prostate but your relatively low PSA scores suggests that the current risk of spread/growth of the cancer is still at an "early stage" which is amenable to various therapies.

    Unfortunately, with Kaiser, the choices for the treatment of early stage PCa are quite limited. You basically have a choice of between surgery, radiation (brachytherapy) and active surveillance.

    I am NOT a fan of surgery. Many men have undergone surgery without any significant adverse long term effects. However, many other men have reported very serious side effects following surgery, including permanent ED and incontinence problems that have required further surgery requiring a penile implant and/or the insertion of an artificial urinary sphincter.

    You can read a candid account of the risks of surgery written by a physician here: http://www.hifurx.com/prostate-cancer/prostate-cancer-after-effects.

    If you decide not to go w/surgery, Kaiser NorCal has a low dose rate (LDR) brachytherapy (BT) treatment center located in Roseville, CA. I believe there is another such center located in SoCal but I'm not sure where.

    In order to receive BT at Kaiser, you 1st have to attend their BT group orientation program which lasts a couple of hours. This basically satisfies Kaisers "informed consent" requirement prior to treatment. Kaiser reports very high success rates in its program for men w/early stage PCa. If you choose LDR BT, you will then need to have the size of your prostate measured and then get an MRI and/or CT scan to determine the approximate location of the cancer within the prostate so that the seed placement pattern (location of the seeds and radiation strength) can be determined.

    Compared w/surgery, there is a lesser but still relatively significant risk of ED and incontinence with LDR BT, as well as potential radiation damage to non-cancerous tissues from misplaced radiation seeds due largely to mistakes in the seed placement pattern and/or movement of the seeds (which is less common now than previously).

    If you are considering BT for treatment, ask your urologist if Kasier will treat you with HDR (high dose rate) BT instead. I wasn't aware of HDR BT before I chose to leave Kaiser and do not know if they offer it or not for the treatment of PCa.

    The main difference between LDR BT and HDR BT is that with LDR BT radioactive seeds (the number of seeds typically varies between 70-150) are placed in your prostate permanently, while with HDR BT, the seeds are higher dose and only placed in your prostate for a day and then removed.

    If you choose LDR BT, you will always needs to address when you board an airplane or go through any metal detector sensitive enough to pick them up. You will also be radioactive for about a year (the 1/2 life of the seeds), which may also cause you problems at airports and other locations where there are radiation detectors in place. You will have to carry a special ID card verifying your treatment by LDR BT to avoid the problems w/law enforcement officers if your radioactivity is detected. Not an insignificant problem these days.

    I do not know if Kaiser has an organized "active surveillance" (AS) program but my urologist did suggest that I could just "wait and see" if my Gleason 6 PCa got worse or not by simply "not doing anything" and just getting quarterly PSA tests done to monitor my PSA level. However, an active surveillance "program" really involves more than that.

    There are AS programs offered by other health organizations -- most notably medical schools like UCSF, Johns Hopkins, etc -- where patients are monitored and tracked closely. This usually involves an annual biopsy, quarterly or semiannual PSA tests and annual DREs.
    See for example: http://urology.jhu.edu/prostate/advice1.php.

    An AS program can also involve nutritional changes as well. See, the following link for a paper on Nutrition and Prostate Cancer prepared at UCSF: http://cancer.ucsf.edu/_docs/crc/nutrition_prostate.pdf.

    Ask your urologist if Kaiser has an organized AS program now to see if that's something you may want to join before choosing a specific treatment.

    Apart from surgery, BT and AS, there are a number of different methods of external beam radiation (EBRT) delivery for PCa that have been developed. These methods were NEVER offered or discussed with me at Kaiser. They go by various acronyms including SBRT (stereotactic body radiation therapy), PBT (proton beam radiation therapy) 3DCRT (3D conformal radiation therapy), IMRT (intensity modulated radiation therapy) and IGRT (image guided radiation therapy) and have all been developed in the last 5-10 years in order to address the problems of using unfocused EBRT in the treatment of PCa.

    The benefit of these methods is that they are designed to be more highly focused and accurate in the delivery of radiation than either LDR BT or HDR BT are and, as a result, cause fewer side effects/treatment problems.

    I chose CyberKnife (CK), which is a form of SBRT for my treatment. CK is available at Kaiser BUT NOT for PCa. Kaiser limits its use of CK to those cancers which they consider otherwise untreatable by surgery or other methodologies. In Kaiser's case, they think that offering surgery and BT is enough, even though CK offers significant advantages for the patient and reduced cost as compared with surgery and BT, because Kaiser has a huge investment in staff and equipment in continuing to just offer surgery and BT instead.

    After I learned that CK was available at UCSF, I made the decision to leave Kaiser because I determined that CK offered me the best chance of eliminating the cancer WITHOUT the significant risks of side effects from surgery or LDR BT. AS was also an option but my feeling was, if there was a method of treatment available that I could choose without risking significant sides effect,that I should take it. CK allowed me to make that choice.

    IMHO, CK is currently the most accurate method of radiation delivery available. The technology allows delivery of radiation to the prostate with extreme accuracy (sub mm) which substantially reduces the risk of damaging non-cancerous tissue which (with other methods) can lead to ED, incontinence and other radiation related problems. The technolog is so accurate that it can actually correct/adjust for body and ORGAN movement during treatment, so that the radiation is NOT delivered improperly.

    I suffered absolutely NO significant side effects following my treatment w/CK 2 years ago this coming month. My PSA level has not dropped as much as it has for other CK patients but there is no indication yet that the treatment has failed.

    For more information in CK, you can go to the Patient Forum of Accuray (the mfg of CK) here: http://cyberknife.com/forum.aspx?g=topics&f=2586.

    I also suggest that you view the following video, which gives a good overview of CK as compared with other treatment methods: http://link.brightcove.com/services/player/bcpid1311218266001?bckey=AQ~~,AAABMTO41yk~,0BDF4jnPRYk18rLHqrcfnGVhJxC-Y8Rm&bctid=1349680876001

    This is obviously a lot of information for you to take in but unfortunately with PCa, the patient is the one who has to do the work in order to sift through all of the choices available. No one else can do it for you. Each specialist will tend to promote the treatment that they use and know best, but that is NOT necessarily the BEST treatment choice for you.

    Even though you have a Gleason 7 diagnosis, you have and need to take the time to consider ALL of the choices available to you.

    I think I've given you a fairly comprehensive overview of those choices. Google all of them and learn what you can about them. Then ask your urologist whether anything other than surgery, BT and AS are currently available at Kaiser and, depending on which method you'd prefer, you'll have to decide whether the options available to you at Kaiser are sufficient or whether (like I did) decide to go elsewhere for the treatment you want/need.

    Good luck!

    To add
    Very good idea to have your slides sent to an independent world class institution for a second opinion by a world class pathologist that specializes in prostate cancer. Doing the pathology is very subjective. About two years ago Swingshift worker reported that he paid 170.
    Basically you do not want to be over or under treated.

    For example in your case with a 3+4=7 Gleason, Active Surveillance is not an option since this treatment method with a 3+4 is recommended for those with less than a ten year life expectency.
    AS surveillance is recommended in cases of 3+3=6 with low volume disease(less than 50 percent involvement) in less than 2 or 3 of 12 cores

    As various forms of radiation, surgery is also a valid choice, expecially since you are younger, and the side effects will most likely be less severe. Success of surgery is age related. Radiation sucess is not age related.

    Whatever treatment you choose, it is very important to have a very experienced medical professional. For example with robotic surgery, there is a very steep learning curve...basically the surgeon is practicing during the first 250 surgeries.

    We wish you the best
  • laserlight
    laserlight Member Posts: 165

    To add
    Very good idea to have your slides sent to an independent world class institution for a second opinion by a world class pathologist that specializes in prostate cancer. Doing the pathology is very subjective. About two years ago Swingshift worker reported that he paid 170.
    Basically you do not want to be over or under treated.

    For example in your case with a 3+4=7 Gleason, Active Surveillance is not an option since this treatment method with a 3+4 is recommended for those with less than a ten year life expectency.
    AS surveillance is recommended in cases of 3+3=6 with low volume disease(less than 50 percent involvement) in less than 2 or 3 of 12 cores

    As various forms of radiation, surgery is also a valid choice, expecially since you are younger, and the side effects will most likely be less severe. Success of surgery is age related. Radiation sucess is not age related.

    Whatever treatment you choose, it is very important to have a very experienced medical professional. For example with robotic surgery, there is a very steep learning curve...basically the surgeon is practicing during the first 250 surgeries.

    We wish you the best

    Lew
    Sorry to hear about this. I had the robotic surgery back in feb of 2011. The cancer that I had was thru out the prostate. Surgery was rough on me, I am a healthy male 62 years old. Normal weight only other health issue was blood pressure. I had the bad numbers, gleason of 3+4=7. I just checked my medical records. 18 samples taken 9 of them had 60 percent cancer. This is a difficult time right now trying to make a good decision. Ask a lot of questions with the doctors, donot let them off the hook. Also look real hard at all of the treatment options. I had surgery because I felt that this was the best was to go. All of the methods will have some type of side effects, these will vary from person to person. Some people will come right back snd others will not. Above all this cancer needs to be treated. Hope you return here this is a good site and the group here are always willing to help and offer advice.

    Kurt
  • Kongo
    Kongo Member Posts: 1,166 Member
    Welcome
    Lew,

    Welcome to the forum. I'm glad you found us and took the time to read some of the threads. There is a lot of useful information here from patients who have had to travel a similar path as you.

    I think Swing and Hopeful have given you some great advice. I would add that while "Prostate Cancer for Dummies" may be a place to start learning about this very complex and nuanced disease I hope that you expand your education a bit. While I am sure your doctors at Kaiser are well meaning, telling you to read this book and take a week to make your decision seems to me a rather cavalier approach to deciding on something that has the liklihood of changing your life forever.

    Even if you have to pay out of pocket, I would urge you to seek second and third opinions from specialists outside the Kaiser network who can advise you about different forms of radiation treatment, proton therapy, and other potential options to treat your diagnosis.

    Although you have a Gleason 7 (3+4) it's present with Gleason 6 as well, which is not uncommon. The 40% involvement of your Gleason 7 core is a fair amount, nothing to ignore for sure, but not something that I think you need to make a decision on within a week. It will take you at least a week to set up appointments with different specialists and, as Hopeful and Optimistic recommends, take you some time to get a second opinion on your biopsy slides.

    When I was first diagnosed I went to Amazon.com and downloaded just about every book about prostate cancer they had and read them within a few weeks. At the same time I researched the various treatment options and visited two surgeons, Loma Linda Medical Center for proton therapy, saw two radiation oncologists, and consulted in person and on the phone oncologists that specialize in prostate cancer. Eventually I ended up choosing the same course as Swing, CyberKnife, and like him have had no side effects since my treatment more than two years ago.

    This is not an easy choice but your diagnosis suggests that eventually you will die of something other than prostate cancer, regardless of which treatment choice you choose. In such a situation quality of life after treatment becomes a prime consideration and I hope you and your wife make a list of quality of life issues versus treatment efficiacy of the different options before making a final decision.

    Best of luck to you.

    K
  • Beau2
    Beau2 Member Posts: 261
    Input
    Hey Lewkz,

    Really sorry to hear about your diagnosis of prostate cancer. As you continue to study PCa, I am sure that you will learn that most men are treated and go on to live full productive lives.

    I would recommend that you consider getting a copy of Dr. Patrick Walsh's book, "Guide to Surviving Prostate Cancer", it contains a good overview of PCa. Dr. Walsh is a surgeon and he does favor surgery; however, he also does a good job of reviewing other treatment options ... and there are many.

    If you are concerned about side effects, I recommend you consider getting a copy of Dr. John P. Mulhall's book, "Saving Your Sex Life, A Guide for Men with Prostate Cancer". You can also see videos of Dr. Mulhall discussing this topic. Just google his name and prostate cancer video. Here's one on Penile Rehabilitation: http://www.youtube.com/watch?v=ie8NkOu2VNA&amp;feature=related

    Good luck in your fight against PCa.
  • prezmic
    prezmic Member Posts: 36
    Beau2 said:

    Input
    Hey Lewkz,

    Really sorry to hear about your diagnosis of prostate cancer. As you continue to study PCa, I am sure that you will learn that most men are treated and go on to live full productive lives.

    I would recommend that you consider getting a copy of Dr. Patrick Walsh's book, "Guide to Surviving Prostate Cancer", it contains a good overview of PCa. Dr. Walsh is a surgeon and he does favor surgery; however, he also does a good job of reviewing other treatment options ... and there are many.

    If you are concerned about side effects, I recommend you consider getting a copy of Dr. John P. Mulhall's book, "Saving Your Sex Life, A Guide for Men with Prostate Cancer". You can also see videos of Dr. Mulhall discussing this topic. Just google his name and prostate cancer video. Here's one on Penile Rehabilitation: http://www.youtube.com/watch?v=ie8NkOu2VNA&amp;feature=related

    Good luck in your fight against PCa.

    Welcome
    Too bad you are here, but you will learn a lot. My only advise is to take more than 1 week to decide. You have too many years remaining to have to deal with the effects of your decision.

    I was 53 years of age when diagnosed. PSA 9.2 Gleason 3+4. 60% of 12 cores positive in biopsy. DRI can feel lumps on left side of prostate. All this diagnosed in April 2011. I did not start my treatment until the end of Aug 2011. I utilized this time to consult various doctors, read, and studied this forum. I decided on IMRT (external radiation) and LDBT (low dose seeds). This was entirely based on my expectations for my quality of life.

    So far so good. I have had few side effects, several low PSA follow-ups, and am 100% satisfied with my choices. Once you make a decision - embrase it and make the best of it. You don't want to have any regrets.

    Good Luck!
  • VascodaGama
    VascodaGama Member Posts: 3,638 Member
    prezmic said:

    Welcome
    Too bad you are here, but you will learn a lot. My only advise is to take more than 1 week to decide. You have too many years remaining to have to deal with the effects of your decision.

    I was 53 years of age when diagnosed. PSA 9.2 Gleason 3+4. 60% of 12 cores positive in biopsy. DRI can feel lumps on left side of prostate. All this diagnosed in April 2011. I did not start my treatment until the end of Aug 2011. I utilized this time to consult various doctors, read, and studied this forum. I decided on IMRT (external radiation) and LDBT (low dose seeds). This was entirely based on my expectations for my quality of life.

    So far so good. I have had few side effects, several low PSA follow-ups, and am 100% satisfied with my choices. Once you make a decision - embrase it and make the best of it. You don't want to have any regrets.

    Good Luck!

    A List of Questions to the doctor
    Lewkz,

    Welcome to the board. You will find in this forum excellent advice from the ones that have been “there”.
    I am sorry that you've become a member, but you should get it clear that having prostate cancer it does not mean that you received a death sentence. In fact I would recommend you to postpone any commitment until you feel that you know what you have chosen and on what you can expect. Do not give up but do things coordinately and timely.

    I recall 12 years ago when my doctor asked me to decide. I enter in panic but after 2.5 months of constant “study” and 4 second opinions from different specialits, I knew enough to understand what was happening to me and what to do. I managed to be ready to confront the decision and enbark on a treatment.

    Above, you got good opinions and I believe that you have found response to your doubts.
    Make a list of question to the doctors even if they seem weird to you. If not satisfied with something, you can call the doctor’s office later to request for specific answers from your previous consultation.
    Here is a post that may help you in deciphering more questions to add in your list;
    http://csn.cancer.org/node/224280

    In PCa, anxiety can be our worst enemy. Deal with the facts as they come.

    Good luck in your journey.

    VGama
  • Lewkz
    Lewkz Member Posts: 2
    Thank you so much
    I am glad I logged back in. I did not think I had any responses because I received no e-mail notifications.

    I read all the responses and will read the other recommendations. I e-mailed my doctor last night and told him I chose the robotic surgery due to my wife and I thought that my best chance of survival was to take the prostate out and get cured if it is localized and get it examined for possibilities the cancer had spread. The doctor said bone scans, etc at this early stage won't detect anything and that the most important thing to watch was PSA numbers. Also my urologist leaves for vacation today for 2 weeks. He actually told us not to rush into a decision that day and think about it for a week. He also told us not to base our decision on the fact that the prostate could be examined after removal.

    Until I read this sight I thought my best options were surgery or radiation and surgery had a slightly better success rate. This morning I received his response He said surgery was a smart and sound treatment option and I will be contacted by their robotics surgery coordinator to secure an appointment with one of the robotics surgeons. He then asked if there was anything further he could do for now. I asked if he could recommend an oncologist specializing in prostate cancer for consultation. I did not get a response. I guess he has left for vacation.

    More information about myself. I am Asian. I am not too worried about ED. I just want to be cured of this without worrying about possibility of spread. We have been married 30 years and would like another 30. I am a bit concerned about incontinence though. Although I have enough sick leave for a couple of months plus state disability plan to recover, I work in the field with daily customer contact in their homes and bathroom access could be an issue when I return to work. My wife read the "dummy" book too, and other things online, but not this sight. At this point she worries without surgery the cancer still has a risk of spreading. I haven't told my kids or work about this yet.
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member
    Lewkz said:

    Thank you so much
    I am glad I logged back in. I did not think I had any responses because I received no e-mail notifications.

    I read all the responses and will read the other recommendations. I e-mailed my doctor last night and told him I chose the robotic surgery due to my wife and I thought that my best chance of survival was to take the prostate out and get cured if it is localized and get it examined for possibilities the cancer had spread. The doctor said bone scans, etc at this early stage won't detect anything and that the most important thing to watch was PSA numbers. Also my urologist leaves for vacation today for 2 weeks. He actually told us not to rush into a decision that day and think about it for a week. He also told us not to base our decision on the fact that the prostate could be examined after removal.

    Until I read this sight I thought my best options were surgery or radiation and surgery had a slightly better success rate. This morning I received his response He said surgery was a smart and sound treatment option and I will be contacted by their robotics surgery coordinator to secure an appointment with one of the robotics surgeons. He then asked if there was anything further he could do for now. I asked if he could recommend an oncologist specializing in prostate cancer for consultation. I did not get a response. I guess he has left for vacation.

    More information about myself. I am Asian. I am not too worried about ED. I just want to be cured of this without worrying about possibility of spread. We have been married 30 years and would like another 30. I am a bit concerned about incontinence though. Although I have enough sick leave for a couple of months plus state disability plan to recover, I work in the field with daily customer contact in their homes and bathroom access could be an issue when I return to work. My wife read the "dummy" book too, and other things online, but not this sight. At this point she worries without surgery the cancer still has a risk of spreading. I haven't told my kids or work about this yet.

    FWIW
    Lewkz: If you've chosen surgery, so be it, BUT you need to be aware that cutting out your prostate will not necessary "cure" you of the cancer.

    It is quite common for men to experience a recurrence and spread of the cancer following surgery which requires followup radiation and/or hormone treatment. Just scroll the threads here for information about that.

    FWIW, I think you are seriously mistaken if you believe that surgery gives you a greater chance for a "cure." Studies have already shown that the more recent forms of radiation treatment (like CK) give you as good a chance of recovery from the cancer as surgery WITHOUT the risks associated with surgery.

    Since your urologist will be away for a couple of weeks, I think you should take some more time to consider this before you subject yourself to the knife but, if you remain firm in your decision, I sincerely wish you the best of luck.
  • Samsungtech1
    Samsungtech1 Member Posts: 351

    FWIW
    Lewkz: If you've chosen surgery, so be it, BUT you need to be aware that cutting out your prostate will not necessary "cure" you of the cancer.

    It is quite common for men to experience a recurrence and spread of the cancer following surgery which requires followup radiation and/or hormone treatment. Just scroll the threads here for information about that.

    FWIW, I think you are seriously mistaken if you believe that surgery gives you a greater chance for a "cure." Studies have already shown that the more recent forms of radiation treatment (like CK) give you as good a chance of recovery from the cancer as surgery WITHOUT the risks associated with surgery.

    Since your urologist will be away for a couple of weeks, I think you should take some more time to consider this before you subject yourself to the knife but, if you remain firm in your decision, I sincerely wish you the best of luck.

    RP
    I opted for RP but as luck would have it, it had spread to the bladder neck. Tests can show this to save doing the wrong treatment. After gaining knowledge on this site I would say that Swingshiftworker, and Kongo should be listened to closley. Unfortunately urologists push towards RP. These gentlemen are offering very good advice. Your cancer does not seem that bad.

    Good luck with your decision.

    Mike
  • chorton581
    chorton581 Member Posts: 15
    30 months ago i had my
    30 months ago i had my prostate removed at mayo in phoneix by dr erik castle.
    Could not have been a better choice for me.
    My psa at the time was 5.5

    0 side effects.
    psa results on latest test were 0.02
  • hwt
    hwt Member Posts: 2,328 Member

    30 months ago i had my
    30 months ago i had my prostate removed at mayo in phoneix by dr erik castle.
    Could not have been a better choice for me.
    My psa at the time was 5.5

    0 side effects.
    psa results on latest test were 0.02

    Robotic surgery
    My husband's prostate cancer was caught at an early stage. At 75 he opted for robotic surgery. Catheter the week following was the worst. Wore whitey tighties and a pad for a few weeks. Last 2 PSA tests were zero. No lasting side effects. In fact he used to get up 5 times a night to go to the bathroom and now it's once or twice. He did the exercises faithfully following surgery and I think that made the difference. We have never second guessed that was the right decision for him.
  • JSA406
    JSA406 Member Posts: 4
    another possibl choice
    I just joined this morning and this is my first post.
    I was diagnosed with stage 3 of an agressive form of prostate cancer. Six biopsies also revealed four tumors. I was told I had two years to live if I did not start radiation and HRT immegiately.

    Needless to say I was shocked but decided to search online for any possible alternatives. I located a report by B. B. Aggarwal of the U. of Texas stating that his clinical test showed a natural supplement called curcumin, induced apotosis in cancer cells more effectively than dexamethasone, one of the best chemotherapies being used at that time. More research supported his findings.

    I was already taking other supplements and decided to give curcumin a try. I took 2 400mg caps 3 times a day. Last Jan. my oncologist reported to my GP that I was completely well and that a CT scan and a Bone scan found no evidence of any disease.

    Checking it out may help you make a more informed decision.
  • JSA406
    JSA406 Member Posts: 4
    Curcumin
    Lewkz:

    I should have mentioned that curcumin is very safe, even in high doses. It kills the cancer without harming normal cells and it also prevents the cancer from spreading. I never had any symptons or pain. I am 85 and looking forward to reaching 100.
    My doctor did not agree with my decision but is very impressed with the results.
    Whatever you decide, I wish you luck.
  • ob66
    ob66 Member Posts: 227 Member
    JSA406 said:

    Curcumin
    Lewkz:

    I should have mentioned that curcumin is very safe, even in high doses. It kills the cancer without harming normal cells and it also prevents the cancer from spreading. I never had any symptons or pain. I am 85 and looking forward to reaching 100.
    My doctor did not agree with my decision but is very impressed with the results.
    Whatever you decide, I wish you luck.

    I wish you well
    There are many people on this site who take hours of time to research, and hours of honourable time to inform. For you to come on as a newby, and be emphatic about "miracle cures" is insulting and without basis. If you emphatically insist on believing such bull carp, then so be it, but to espouse it as some miracle solution here is ridiculous. Here, you have people who, collectively, are looking for legitimate solutions to serious problems. Now, you opined once, and were called up short as a newcomer. You came back emphatically and looked lacking in any respect. I would suggest listening would benefit you greatly. If you wish to continue as a stubborn eighty five year old then there is little help here for you. Unfortunately, most responses would have been much more compassionate, but you have chosen an antagonistic approach as a newcomer. I would suggest you back up and reenter gently and inquisitively.
  • laserlight
    laserlight Member Posts: 165
    ob66 said:

    I wish you well
    There are many people on this site who take hours of time to research, and hours of honourable time to inform. For you to come on as a newby, and be emphatic about "miracle cures" is insulting and without basis. If you emphatically insist on believing such bull carp, then so be it, but to espouse it as some miracle solution here is ridiculous. Here, you have people who, collectively, are looking for legitimate solutions to serious problems. Now, you opined once, and were called up short as a newcomer. You came back emphatically and looked lacking in any respect. I would suggest listening would benefit you greatly. If you wish to continue as a stubborn eighty five year old then there is little help here for you. Unfortunately, most responses would have been much more compassionate, but you have chosen an antagonistic approach as a newcomer. I would suggest you back up and reenter gently and inquisitively.

    Studies
    The main point to take into consideration is how was the study performed. At my doctor visit the other day I spoke to her about many things and studies came up. It is real important to look at how these studies were setup and ran. It is real easy to tweek these and move the results in many directions. If the study was conducted in a true double blind fashion then the results tend to be more accurate. In short order you have to research how the study was set up and ran. I donot think that there is a magic bullet for a prostate cancer cure. But I am always glad to see positive results. I am also glad to see the medical communitie called out and flagged when they start to wander off course. a lot of doctors are under pressure to publish articles, this helps with their standing. Cancer is a very difficult illiness to treat, what works on one person does not always work on the other person. It takes a lot of time to research these studies and to extract information. And this can be very confusing at times. Glad to see positive results, but will always question studies. One of my daughters have a very good friend, college room mates. Her husband is a Molculear chemist PHD, and is doing drug research into cancer treatment. I had some time to speak with him and he explained that what he does is to take the drugs and see how they react to cancer cells. The data is collected and then moved on other people will then research and investigate deeper. Again hope this helps. I myself try to keep an open mind when it comes to cancer, I need to know information
  • dcirrotti
    dcirrotti Member Posts: 33
    prezmic said:

    Welcome
    Too bad you are here, but you will learn a lot. My only advise is to take more than 1 week to decide. You have too many years remaining to have to deal with the effects of your decision.

    I was 53 years of age when diagnosed. PSA 9.2 Gleason 3+4. 60% of 12 cores positive in biopsy. DRI can feel lumps on left side of prostate. All this diagnosed in April 2011. I did not start my treatment until the end of Aug 2011. I utilized this time to consult various doctors, read, and studied this forum. I decided on IMRT (external radiation) and LDBT (low dose seeds). This was entirely based on my expectations for my quality of life.

    So far so good. I have had few side effects, several low PSA follow-ups, and am 100% satisfied with my choices. Once you make a decision - embrase it and make the best of it. You don't want to have any regrets.

    Good Luck!

    imrt/igrt
    My doctor has me (70 years old) on WW = PSA 4.2 Gleason 3+3 with one core + out of 12 but has said that if we go for treatment he will do IGRT or IMRT.
    I know nothing about this, can you tell me what it is. Now is the time to think and get good feedback.